qualitative research in global health

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Reflections on qualitative research in global health: The practical complexities of crossing cultures, contexts, and languages

Olinda santin.

1 School of Nursing and Midwifery, Queen’s University Belfast, Belfast, Northern Ireland

Hien Thi Ho

2 Faculty of Health and Medical Sciences, The University of Adelaide, Adelaide, South Australia, Australia

Chris Jenkins

3 Centre for Public Health, Queen’s University Belfast, Belfast, Northern Ireland

As researchers, we carry out our explorations while gripping tightly to the rulebook of methodologies. As an international and interdisciplinary team specializing in cancer care research, we have often however found ourselves without a “rulebook”, which prepared us for all eventualities and the fact that methods do not always translate between problems [ 1 ]. Qualitative research with people experiencing illness in different contexts, cultures, and languages is unpredictable, convoluted, and requires methodological flexibility. Adapting to obstacles quickly can be challenging, as research protocols by nature are pre-determined and often inflexible [ 2 ].

Here we share our experiences of bringing together researchers from Vietnam and Northern Ireland to qualitatively explore the support needs of families affected by cancer in Vietnam [ 3 - 5 ].

DEVELOPING A QUALITATIVE METHODOLOGY – TIME AND CONSULTATION IS KEY

Principal investigators (PIs) often draft methodologies based on pre-conceived ideas of what may optimize data collection, which may negatively impact researchers working in countries in which they do not live. This became apparent early in our partnership, as researchers from high-income countries drafted protocols with little collaboration or consideration of the complexities of qualitative data collection in a low-income environment. Consequently, we made mistakes and developed impractical proposals that required significant amendments following grant awards.

Learning from our errors, we identified the need for our UK-based researchers to spend an extended period in Vietnam. We travelled from North to South, consulting with academics, patients, caregivers, charity groups, and healthcare professionals. We learned about local customs on how to show respect and facilitate openness, the optimal means to collect data, and how to promote research engagement for those lacking resources. These development activities provided the time and space to co-create interview schedules which were considerate of the complexities of language and phasing in the Vietnamese context.

We believe that pre-research visits and equitable collaboration are critical to the development of a qualitative methodology which promotes cultural competence, respect, and robust research, which can potentially impact health outcomes [ 6 , 7 ]. We were fortunate to have been granted institutional-led finances for this preparatory work; such opportunities are often limited, but we believe they are invaluable. In an environment in which financial support is often limited, the use of online platforms such as Zoom can be helpful in developing and sustaining partnerships. However, we believe in-person discussions are still key for early developmental work. Research funders and institutions should provide increased opportunities for “pre-study” work to promote quality qualitative research which is contextually and culturally appropriate.

COLLECTING QUALITATIVE DATA – A TEAM APPROACH WORKS BEST

Once methods are drafted, we have found that the practicalities of collecting qualitative data require discussion and careful planning. In our early partnership, we often felt as though we were learning as we went through trial and error. We debated the merit of UK researchers/non-native speakers being present during interviews and focus groups. Given our earlier lessons, we were keen to ensure mutual understanding and equitable team roles [ 8 ]. Despite our apprehension and not speaking Vietnamese, we found it advantageous for our UK researchers to be present during interviews and focus groups. UK researchers assumed an observing/listening role, with Vietnamese researchers taking a lead role. Participants were comfortable with the presence of UK researchers and perceived their presence as an international acknowledgement of the importance of their experiences.

Photo: International research visits to develop qualitative research protocols. From Hien Thi Ho’s personal photo collection.

Data collection was conducted in Vietnamese by the PI and simultaneously translated by a second researcher to English-speaking researchers. UK researchers made detailed field notes and raised probes by writing notes or making comments to the translator/PI. Probing can be challenging to navigate due to cultural etiquette, while also avoiding asking leading questions [ 1 ]. We found that probes from the non-native-speaking researchers were helpful, as points were occasionally overlooked, since they were perceived as mundane by the Vietnamese-speaking team. Probing took some practice, however, as our early attempts often disrupted the interviewer’s flow. We found over time that managing probes allowed us to develop our discussions and increase our reflexivity. This process, however beneficial, relied heavily on our Vietnamese team’s fluency in English and was at times taxing on researchers who switched between the role of translator and researcher [ 9 ].

Despite being resource intensive, the presence of highly experienced qualitative researchers and PIs (both UK and Vietnam) was key to ensuring the depth of data collection. These practices improved the quality of our studies, while simultaneously building research skills and capacity for early career researchers.

Due to travel and institutional commitments, we collected our data in a two-week period, resulting in researcher fatigue, which is far from ideal in a qualitative context. If possible, extended time and resources should be allowed to facilitate the presence of all team members during data collection.

DATA ANALYSIS – EXTRA TIME AND EXTRA STEPS ARE NEEDED

Interpretation of data across languages, cultures, and contexts is difficult, and we often faced misunderstandings. Factoring in additional time and steps was key to overcoming these challenges [ 10 ]. Concurrent analysis, particularly for non-native researchers, is necessary for reducing potential inaccuracies or misrepresentations of views. Following each focus group or interview, non-native researchers provided detailed notes and a written and verbal overview of the key themes or subthemes to the larger team. This process of inter-rater reliability and feedback provided additional context and meaning and continued until data collection was finished. Conducting this step within the country strengthened data quality and trustworthiness and allowed us to identify and correct any challenges or misconceptions. This process was also supported by a detailed translation of transcripts into English.

We proceeded through all the usual steps of qualitative analysis, including, verbatim transcription, member checking, back translation to English, coding, and development of themes and subthemes. We found that analysis is more robust when conducted face to face, with the whole research team reading, coding, and theming data in an iterative discussion. Our Vietnamese team spent time in the UK developing the analysis in order to improve it.

PREPARING MANUSCRIPTS – KEEP TALKING

We identified many misinterpretations or lack of depth in analysis during the writing process. As our partnership developed, we learned the important step of verbalizing our interpretation to each other. Each member, in turn, discussed their data interpretation, with the listener paraphrasing back to ensure understanding of perspective. Verbalizing data interpretation opens discussions, adds depth to interpretation, and aids consensus. Results are often written as a team discussing the interpretation line-by-line until consensus is reached and the manuscript finalized. This process requires experience and leadership and is not without practical implications; it depends on financial and time resources, team motivation, and requires long periods of time spent overseas. We found that English-speaking researchers should provide time and space for supporting the writing process, especially redrafting paragraphs and sentences to ensure alignment with research findings, thus increasing the trustworthiness of data.

CONCLUSIONS

Qualitative global health research is essential for understanding and responding to illness and disease within context. Qualitative research methods are not culturally neutral, and the joining of disciplines, languages, and contexts can present many challenges. Researchers need to discuss the practicalities of doing qualitative research across contexts and languages, as extra consideration and steps are necessary to ensure major pitfalls.

Acknowledgements

We wish to acknowledge the support of Hanoi University of Public Health. Studies associated with this viewpoint were approved by Hanoi University of Public Health Ethics Committee.

Funding: There is no funding associated with this viewpoint.

Authorship contributions: OS and HTH contributed to this manuscript equally and CJ reviewed drafts of the manuscript.

Disclosure of interests: The authors completed the ICMJE Disclosure of Interest Form (available upon request from the corresponding author) and disclose no relevant interests.

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Open Access

Peer-reviewed

Research Article

Considering equity in global health collaborations: A qualitative study on experiences of equity

Roles Conceptualization, Data curation, Formal analysis, Funding acquisition, Investigation, Methodology, Writing – original draft, Writing – review & editing

* E-mail: [email protected]

Affiliation Department of Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa

Roles Conceptualization, Formal analysis, Funding acquisition, Methodology, Writing – review & editing

Affiliation Division of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa

Roles Conceptualization, Funding acquisition, Writing – review & editing

Roles Conceptualization, Funding acquisition, Methodology, Writing – review & editing

Affiliation Centre for Health Equity, School of Population and Global Health, The University of Melbourne, Melbourne, Australia

Roles Conceptualization, Data curation, Formal analysis, Funding acquisition, Investigation, Methodology, Project administration, Supervision, Writing – review & editing

• Marlyn C. Faure, 
• Nchangwi S. Munung, 
• Ntobeko A. B. Ntusi, 
• Bridget Pratt, 
• Jantina de Vries

• Published: October 7, 2021
• https://doi.org/10.1371/journal.pone.0258286
• Reader Comments

International collaborations have become the standard model for global health research and often include researchers and institutions from high income countries (HICs) and low- and middle-income countries (LMICs). While such collaborations are important for generating new knowledge that will help address global health inequities, there is evidence to suggest that current forms of collaboration may reproduce unequal power relations. Therefore, we conducted a qualitative study with scientists, researchers and those involved in research management, working in international health collaborations. Interviews were conducted between October 2019 and March 2020. We conducted 13 interviews with 15 participants. From our findings, we derive three major themes. First, our results reflect characteristics of equitable, collaborative research relationships. Here we find both relational features, specifically trust and belonging, and structural features, including clear contractual agreements, capacity building, inclusive divisions of labour, and the involvement of local communities. Second, we discuss obstacles to develop equitable collaborations. These include exclusionary labour practices, donor-driven research agendas, overall research culture, lack of accountability and finally, the inadequate financing of indirect costs for LMIC institutions. Third, we discuss the responsibilities for promoting science equity of funders, LMIC researchers, LMIC institutions, and LMIC governments. While other empirical studies have suggested similar features of equity, our findings extend these features to include local communities as collaborators in research projects and not only as beneficiaries. We also suggest the importance of funders paying for indirect costs, without which the capacity of LMIC institutions will continually erode. And finally, our study shows the responsibilities of LMIC actors in developing equitable collaborations, which have largely been absent from the literature.

Citation: Faure MC, Munung NS, Ntusi NAB, Pratt B, de Vries J (2021) Considering equity in global health collaborations: A qualitative study on experiences of equity. PLoS ONE 16(10): e0258286. https://doi.org/10.1371/journal.pone.0258286

Editor: Joshua Amo-Adjei, University of Cape Coast, GHANA

Received: April 19, 2021; Accepted: September 24, 2021; Published: October 7, 2021

Copyright: © 2021 Faure et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: This study interviewed senior and, in some instances, high profile researchers and those involved in large international collaborations. By making the data set publicly available, it could jeopardise the anonymity of our participants. In selecting particular quotes, we have ensured that no potentially identifiable information is included, but this information is woven throughout the interview transcripts. Removing that information from the transcripts renders the data less useful. For these reasons, we cannot release our data publicly online. However, we will make our data available to researchers requesting the data directly from us. In that case, we will facilitate the submission of a short research proposal to the University of Cape Town’s Faculty of Health Sciences, Human Research Ethics Committee (which also approved the original collection of the data). Once approved, we will happily share these data with future researchers for re-analysis. The Human Research Ethics Committee can be reached on [email protected] .

Funding: The research presented in this article was supported by a research grant from the Wellcome Trust (Title: Equity and the Human Cell Atlas; WT 219600/ Z/19/Z). All authors listed, MCF, NSM, NABM, BP and JDV are listed as co-investigators of this award. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing interests: N/A

Introduction

International collaborations have increasingly become the research model of choice in global health research [ 1 ]. These collaborations usually include partners and institutions from high-income countries (HICs) and low- and middle-income countries (LMICs) [ 2 ]. Such international collaborations have the potential to generate new knowledge that can help reduce local and global health inequalities [ 3 – 8 ], offer opportunities for LMIC researchers to be involved in innovative research projects, and increase LMIC research capacities [ 6 , 9 , 10 ]. For HIC-based researchers, global health research collaborations may provide an opportunity to engage in socially responsible research [ 11 ].

While these are significant benefits of collaborations between HIC and LMIC researchers and institutions, there are concerns about the extent to which collaborations promote equality and fairness. In some instances, these collaborations have been labelled as neo-colonial [ 12 ] and potentially undermining equity [ 13 – 15 ]. And while HIC researchers may be well intentioned, they also benefit from attracting research funding to conduct research in LMICs [ 16 , 17 ], access to and publishing on data which they would otherwise struggle to obtain, which subsequently allows for their career progression through recognition and promotion [ 16 , 18 ].

Literature aiming to understand and foster equity in global health research has three main areas of focus. The first concerns normative accounts of why equity is essential [ 19 , 20 ]. This work draws on political philosophy relating to social justice, which highlights the following practices as imperative for moving towards more just relations: mitigate unequal power relations that reproduce material and symbolic power differentials [ 21 – 23 ]; ensuring group recognition by considering the contributions and perspectives of all groups [ 22 , 24 – 26 ]; promoting inclusive decision-making [ 22 , 27 – 29 ]; promoting the health and well-being of those considered marginalized or disadvantaged [ 21 , 30 ]; and ensuring self-development, which means making available opportunities for individuals to improve their capacities [ 31 ].

The second area of focus in literature discussing equity in global health research relates to the development of frameworks and metrics that operationalize principles and norms with the aim of standardizing, implementing, and measuring specific aspects of equity. One of the earliest guidelines developed was by the Commission for Research Partnership with Developing Countries (KFPE) [ 32 ]. More recent frameworks, such as the Partnership Assessment Toolkit developed by the Canadian Coalition for Global Health Research [ 33 ] recognised the lack of voices from the global South and have consequently adopted more inclusive approaches. Similarly, the Research Fairness Index, developed by the Council on Health Research for Development (COHRED), does not only provide practical guidelines but also offers a reporting mechanism for research organisations to assess and improve equity within partnerships [ 34 , 35 ]. Generally, these guidelines and frameworks focus on various features of global health research, including capacity building, responsibilities within research projects, transparency and accountability to partners and funders, data sharing practices, dissemination of results and principles related to ownership of data and national development of research capacities [ 15 ]. While important, such frameworks may not provide adequate guidance on dealing with the practical challenges of achieving equity in collaborations [ 36 ].

The third area of focus concerns empirical studies exploring researchers’ experiences of working in international research collaborations. The studies in this focus area highlight the need for fair funding arrangements, including fairness in control over funding and decisions about how and where money is spent [ 1 , 37 – 39 ]. This literature suggests that capacity building is critical to transfer skills [ 37 , 40 , 41 ] and grow the research independence of stakeholders in LMICs [ 39 , 42 ]. Moreover, empirical studies underscore the need for fair research agreements, including shared decision-making between collaborators and LMIC actors’ inclusion as intellectual contributors to the collaboration [ 39 , 41 , 43 ]. Related to more equal divisions of labour, studies describe the importance of recognizing the contributions of LMIC actors [ 1 ], particularly through authorship. The invisibilization of LMIC authors in academic publications is especially glaring given bibliometric studies showing LMIC authors are either not listed as authors in some instances or are frequently not listed as first or senior authors despite research being conducted in LMICs and LMIC investigators leading key components of the research [ 44 – 46 ]. Trust and communication between research partners are also identified as necessary in this literature [ 1 , 37 ]. Finally, these studies note that the health needs of LMIC communities need to be prioritized [ 38 , 39 ] in global health research collaborations and that LMIC communities must benefit from research [ 1 , 38 , 47 ].

While normative accounts and practical guidelines make an important contribution to understanding what equitable collaborations should look like, empirical studies have often highlighted the practical challenges inherent to achieving them. Empirical studies can provide important insights from the experiences of those involved in developing equitable research collaborations. They could also inform policies, frameworks, and guidelines related to equitable research collaborations in global health. Yet, there are surprisingly few empirical studies on science equity, despite the significant increase in global health collaborations [ 48 ].

This study was conducted within the context of a larger study focussing on equity within the Human Cell Atlas (HCA) consortium. The HCA is an international scientific collaboration that seeks to create comprehensive reference maps of the cell states of all the cell types in healthy human bodies, characterized both in terms of stable properties (such as DNA sequence) and transient features (such as RNA expression and protein profiles). Although currently largely positioned in laboratories in North America and Europe, the ambition is for the Atlas to represent global diversity–in terms of where samples are drawn from and how scientists across the world are involved [ 49 , 50 ]. Given the global scope of the study, we conducted a qualitative study with researchers and those involved in research management about their experiences of equity within the context of international health collaborations. Participants were either members of the HCA or had extensive experience working in international collaborations. Our study explored experiences of equity more generally and specific aspects related to the HCA. During our analysis, however, findings were more general and not exclusive to the HCA.

Study design, participants, and sampling

To gather evidence about equity in health research, based on the experiences of those involved in global health research collaborations, we conducted 13 interviews with 15 participants (scientists, researchers and research managers) between October 2019 and March 2020. In two instances, participants asked if they could be interviewed together with another colleague involved in global health collaborations. Initially, we recruited participants involved in the HCA consortium, primarily members of the HCA’s equity working group or who were present at HCA meetings that specifically discussed equity. To complement these interviews, we also recruited participants who were not part of the HCA but had extensive experience working in international collaborations. We thought the inclusion of those outside of the HCA would enrich our understanding of equity for the HCA and more generally. We also involved scientists and researchers and those occupying roles relating to research management, given that we were also interested in features and experiences of equity that were not exclusively related to research but also were critical to establishing equitable collaborations.

We relied on purposive sampling [ 51 ] because we were specifically interested in recruiting participants involved in the HCA or who had experience in international collaborations. We also sought to ensure a geographically diverse sample. Participants were based in Nigeria, South Africa, India, Bangladesh, Singapore, the United Kingdom, the United States and Switzerland. We had hoped to recruit more HCA members and had contacted several potential interviewees, however, it was challenging to find a suitable time to conduct interviews given participants’ busy schedules. Furthermore, the HCA is a grassroots organisation of basic scientists, with little in the way of identifying projects that belong to it, which made it difficult to identify HCA-affiliated researchers. That HCA researchers tend to be basic scientists–with possibly little experience in or need to reflect on the ethical aspects of their work–may also have compromised our ability to recruit HCA researchers for this project. After trying to recruit more HCA members, we decided to increase the number of participants not affiliated with the HCA. For participants who were not affiliated with the HCA, we also relied on purposive sampling to identify participants who had experience in working in international research collaborations. Table 1 summarises participant details.

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https://doi.org/10.1371/journal.pone.0258286.t001

Research instruments

MCF and JDV developed the semi-structured interview guide with input from NSM and BP. Questions to participants covered a range of topics relating to their experiences of equity in international research collaborations, familiarity with or experience of the HCA, and bottlenecks or obstacles that stand in the way of achieving equity. This included describing what they understood equity to mean, their experiences of being involved in international collaborations, what they thought is necessary for collaborations to be equitable, and how issues of equity manifest in various aspects of the research process. While most of our questions related to their experiences and ideas about equity in international research collaborations, we had one section specifically asking all participants questions about equity and the HCA. While our interviews touched on the HCA, we found that interviewees’ responses (including members of the HCA) were not particular to the HCA. Therefore, we opted to present our findings in more general terms. When we asked participants about the HCA specifically, their responses were often generalizable and consistent with their responses to more generic questions about equity.

Data collection

All interviews were conducted in English by MCF. Three of the interviews, with four participants, were conducted face to face and were audio-recorded. The remaining 10 interviews, with 11 participants, were conducted via an online platform and were audio-recorded. All interviews were transcribed verbatim. Interviews lasted between 45 and 90 minutes. While we had initially planned on including more participants, the emerging COVID pandemic and participants’ busy time schedules made it difficult to continue recruiting participants for this study. When we analysed the data we had, we realised that we had reached saturation on the main themes, meaning that participants repeated similar ideas related to previous interviews [ 52 ].

Data analysis

Data analysis was iterative and commenced after the first interview; early themes were probed in subsequent interviews. A thematic approach was used to analyse the data, and themes were derived inductively [ 53 ]. Given that we were interested in participants’ experiences of equity and how they conceptualised equity, we relied on an inductive approach to our analysis. First, MCF read through the transcripts several times for data familiarisation and then used three transcripts to develop an initial list of open codes. Open codes were analysed to develop a hierarchical coding system together with NSM and JDV. MCF developed a codebook with definitions of each code and overall themes, and these were discussed with NSM and JDV. Once themes and codes were finalized, MCF, NSM, and JDV together coded the entire dataset. MCF collated and read through the coded dataset to verify the accuracy of the coding and consulted with JDV and NSM where any discrepancies arose. We used NVivo 12 to support data analysis [ 54 ]. In the section below, we have used anonymous interview codes. In each of the codes, the first letter indicates the occupation of the participants (G = researcher manager; S = scientists/researcher) and the last letter represents where the participant is based (N = global North; S = global South). The numbers in between the letters were randomly selected to distinguish interviewees.

Ethics approval

This study was approved by the University of Cape Town, Faculty of Health Sciences Human Research Ethics Committee (641/2019). All participants were sent informed consent forms and interview guides and provided written consent before the interview.

Three major themes were derived from our analysis: 1) features of equitable collaborations; 2) why inequality persists; 3) who is responsible for equity.

Features of equitable collaborations

Relational characteristics..

The first theme in our results relates to features of equitable collaborations. Here participants reflected on both relational and structural aspects of equitable partnerships.

When describing relational characteristics, several interviewees described that equitable collaborations create a sense of co-ownership over the project. One participant noted:

…[W]here, the parties involved look at themselves as partners… the parties involved are co-creating knowledge. When the parties trust one another. When the parties are in what is called not a collaboration but a partnership. (S850S)

Notably, participants described that an equitable collaboration is not necessarily one that is equal. Instead, it is about “agreeing to something which we should all feel that it is fair” (S678N).

In addition to partnerships, participants also commonly used the terms ‘friendship’ and ‘creating a sense of belonging’, with one participant reflecting on this idea:

And this sense of belonging is what is the hallmark of equity. So, if you think of a project where there are multiple stakeholders and if every stakeholder feels a sense of belonging, that’s what I would term a project where equity is a hallmark… (S467S)

Prioritizing equity as an important value, even when it conflicts with other values such as expediency, was critical to building trust between individuals and institutions.

In addition, participants also described several structural features of equitable collaborations.

Structural characteristics.

Clear contractual agreements . While relationship-building was a sign of equitable collaboration, participants also emphasized the importance of contractual agreements as necessary to building equity:

…if you want to create good partnerships, you need good contractual agreements, whether it is an informal agreement or MOU or a formal contract. But contracts are meant to regulate the quality and the equity or whatever you call the partnerships.” (G324N)

What transpires is that equity requires fairness, trust, and codified agreements to regulate collaborators’ expectations.

Capacity building . Our interviewees generally recognized capacity building as an important feature of equitable collaborations. While participants had varying perspectives on capacity building, they all described it as an ethical obligation and thus not optional. Capacity building was primarily framed as research training, such as training in specific scientific methods or statistical techniques or ensuring that students obtain graduate degrees. Importantly, our participants note that capacity building activities need to benefit LMIC collaborators. One participant was especially critical of simplistic forms of capacity building which may have the perverse effect of benefitting more powerful research partners:

…some capacity building programs run by Northern partners actually end up benefiting the Northern partners more than they benefit local people… Unless there is a deliberate effort to address this issue in research partnerships, it requires a lot of hard work and a lot of thought on how to do it. (G238S)

Capacity building can also focus on a transfer of skills or technological resources to individuals and groups. To promote equity, participants asserted that capacity building activities should aim to increase the research independence of LMIC partners. One participant noted:

I think capacity building is complex because it could involve just a technique, but I mean it should be more holistic in terms of developing the capacity to become independent researchers. To gain some intellectual and financial independence. (G328S)

While these forms of capacity building were seen as critical components of any equitable collaboration, participants also noted the necessity to expand the scope of capacity building beyond individual researchers or research groups to include institutional capacity building:

… part of it will be about developing other capacities that are needed to support research; it’s also about the project management, and the report writing, and the financial side of it and all that. ( G053S)

From our data, both research-related and institutional forms of capacity are critical for equitable collaborations. Participants also observed that it would require a significant commitment from all parties, including funders.

Inclusive division of labour . Another important feature of equitable collaborations that we identified relates to a more inclusive division of labour. Many of our participants based in LMICs were particularly expressive about only working in collaborations where they were not merely seen as sample collectors but also expected to contribute intellectually to the research project:

Even if the funds might be coming from Northern partners, we want to be involved … as intellectual drivers of the projects as much as possible. And even to the same extent that our Northern colleagues are, and then the benefits accrued in terms of, let’s say, research outputs and publication. (G328S)

Involving local communities . Local communities’ involvement in the research process was also seen as a key feature of equitable collaborations. Many participants described that the inclusion of community members was essential to developing equitable relationships. One important reason given is that the entire research enterprise would not be possible without local participation. Our participants seemed to suggest that communities should be involved throughout the research process:

Like how we include them [communities] more, even designing the next questionnaire, instead of giving them the question, can we sit down with them, design it together? Can we spend more time with them, and can we include them, give them credit for the work? (S459S)

The suggestion seemed to be that communities should be empowered to participate meaningfully in decision-making around the research process:

…we do use community advisory boards, but there are a lot of issues in terms of how much of a voice community advisory boards really have… is it just to have a look at the consent form and say it’s okay but, how much of a voice and how much of a role do they play? And then even to identify who are your stakeholders within the community and how do you engage them really fruitfully. (G053S)

Participants also described that communities must benefit from research and applications developed from it. One participant noted that although basic research would generate few direct benefits for research participants, it is possible to design benefit-sharing approaches creatively and to include skills development and empowerment programmes or health education consultations and workshops. This could also be done, for instance, through preferential licensing arrangements, as one of our participants noted:

…We [research collaborators] agree, and it’s written that for those communities, these diagnostics that we are developing will be for them at production costs. There’s not going to be any profit from you producing it because their contribution resulted in the diagnostics, so they must get something back. And that’s how you can make equity. (S850S)

One participant noted that whilst developing benefit-sharing models with communities is important, it is complex and can have a perverse impact if not taken seriously:

I think it is important to avoid simplistic approaches to it because you can easily end up with a rather instrumental approach to it, with benefit-sharing although it starts from a good point of view, applied in the wrong way can begin to seem a bit like kind of ‘how do we buy our way into doing all we want to do’. (S678N)

Why inequality persists

The second central theme from our data relates to why inequality persists in international collaborations. Our participants reported that one important reason was exclusionary labour practices that are a common feature of inequitable collaborations. In such practices, LMIC partners would typically be responsible for sample collection, while HIC partners would be responsible for intellectual aspects of the project, such as proposal or manuscript writing and data analysis. LMIC participants noted their exclusion could also be indirect, for example, by providing LMIC collaborators with insufficient time to achieve realistic milestones or develop appropriate budgets. A participant working in the research management office of a research-intensive African university reflected on how common this is:

Very often there are these very last-minute approaches… where a researcher comes to us and says, we urgently need this signed… our finance officers work with them to say this is not sufficient. Actually, you left out these costs, and you need to build these indirect costs for the institution, etcetera. And then the PI goes, but they are only offering us this much money, and we say well you need to go back and negotiate for more money, and this is a challenge … If they have literally been approached in the final week, there is very little they can do… (G890S)

Such exclusionary labour practices were partly attributed to structural challenges relating to some research funding schemes whereby institutions based in HICs are awarded large grants directly from funders and subsequently create sub-awards for LMIC institutions. One researcher reported on their own experience of this arrangement:

Like most of the organizations in the Global South are actually not directly funded. They become a sub-awardee, and the way that works is… We [researchers based in HICs] will tell you exactly what you do, we will tell you that these are the number of mothers we want to enrol, these are the number of children we want to enrol, this is the test we will do, and we don’t care about anything else, we just want data. That’s how most of the studies work. (S459S)

Such exclusionary practices risk perpetuating a relationship of dependency for LMIC researchers:

By not enabling them [referring to LMIC researchers] to do their data analysis, publishing the research in their name all of that, you are literally just getting them to collect the blood sample for you. Here… you are continuing to give them a situation where to survive they need your money, but they can never get better, that is another form of oppression in a way… ( G890S)

Perhaps another reason for exclusion of LMIC researchers relates to how the research system values some practices and not others. For instance, the research system is set up to recognise and reward publications and grant funding, and often does not recognise or reward others, such as the extent to which a researcher promotes equity:

But the world we live in rewards one thing. And one thing only. Which is how many publications have you produced, and how much grant money have you brought in. (S453S)

Another important theme relating to inequitable collaborations is the prioritizing of donor interests. Participants reflected on how donors based elsewhere often influence or determine research agendas in local contexts. One participant asserted that these priorities were often also in the interest of profit:

Global health doesn’t change in two years, but they [funders] are always looking for silver bullets, probably to either fund a start-up or continue funding of a start-up they have already funded. Perhaps there is a vaccine that pharmaceutical companies are making, and they want to introduce the vaccine, and they want us to generate data for the vaccine…. So, I think there’s like they have individual agenda…. I think it’s all about capitalism. (S459S)

In this context, the respondent appears to be signalling that funders have considerable power in setting research agendas and situated such practices within larger global economic and cultural systems.

Another participant followed a similar logic in reflecting on how research projects may result in donor countries benefitting more than their counterparts in the global South, for example, through the concentration of resources and skills. Against this observation that some parties benefit from inequitable relations sits a concern that more powerful researchers and institutions are generally not held accountable for their actions. Various LMIC participants relayed experiences of feeling exploited yet having very little recourse to ensure their HIC collaborator was held to account, despite reaching out to the collaborator’s institution and the funder. One participant linked such impunity to how HIC researchers are often protected by their institutions:

I guess I’ve heard too many stories of institutions covering up really spectacularly bad behaviour. And I would not be optimistic that… institutions would act equitably… I think, unfortunately, the greater the status of an institution, the more it has to lose. (S543S)

Finally, some of our participants, especially those involved in research and grant management, also noted how not paying the total costs of research erodes institutional capacity to effectively manage research projects and provide a conducive environment for research to thrive:

The challenge is you end up in a vicious cycle. If you are chronically recovering insufficient indirect costs, you are never going to have properly maintained buildings, properly maintained finance support, enough legal staff to sign off contracts rapidly for you…And a lot of first-world institutions are getting in a lot more indirect costs to support their research and so they are able to offer more expensive facilities, bigger finance offices, bigger grants offices… (G890S)

Against that background, less powerful institutions in LMICs face an uphill battle, being allowed only to recover a fraction of the indirect costs associated with grants management while simultaneously needing to compete internationally with institutions receiving far more significant amounts and that are already better resourced.

Who is responsible for equity?

Our third theme related to perspectives of who is responsible for ensuring equity. Here, somewhat surprisingly, our participants pointed to a range of LMIC stakeholders’ responsibilities alongside research funders.

Research funders.

While our participants pointed out that funders are not a homogenous group and have different approaches, policies and constituencies to whom they are accountable, they argued that funders have an ethical responsibility to ensure equity is achieved in the projects they fund:

I think ethically they have got a responsibility. I think it is very easy for them to not pay attention to it. Probably because they are also overworked and tired, etcetera, but… if you are going to fund projects where big Northern partners are going to work with small Southern partners, I think as a funder, ethically, it is your responsibility to monitor how that is happening because otherwise, your money may not be going towards what your charitable endgame is. (G89S)

Specifically, our participants thought that funders needed to drive equity by ensuring sufficient resources are allocated to aspects of research and collaborations that could promote it, such as capacity building. Furthermore, our participants described that funders had a role to play in holding researchers who engaged in inequitable collaborations to account–but no concrete suggestions for how they could do so were made.

LMIC research institutions.

LMIC research institutions were also seen as critical to ensuring equity. For example, one participant noted that African institutions are responsible for becoming “trusted institutions”, meaning that they can effectively conduct research and administer large grants in transparent ways. One participant asserted that whilst the challenges faced by researchers when conducting research in LMICs are located at the level of the researcher, these are often symptomatic of institutional challenges related to the under-development of capacities that are critical for research, such as financial, legal and administrative capacities. Other participants noted that institutions play a crucial role in protecting and supporting their researchers, for instance, when negotiating for more equitable terms in collaborations:

…when you fight as an individual, it is more difficult because people can easily overlook you as an individual…if they are serious and backup the local researcher, they can strengthen your hand. (G238S)

LMIC researchers.

Our participants considered that researchers are the most obvious stakeholders responsible for ensuring that collaborations are equitable. Participants noted that while it is often true that HIC collaborators and funders set the research agenda, researchers based in LMICs have to assert their sense of agency:

…I think a degree of self-reflection is required when you are criticizing other groups or individuals… almost like being a victim…We are all subject to forces greater than ourselves, but you know we have some agency as well. We have to put a bit more energy into defining how we would like things to be, rather than just criticizing them. (S678N)

Similarly, one LMIC participant reflected that researchers based in LMICs have a choice about whether to get involved in collaborations that are unequal and, in some instances, exploitative, yet often do not realize that their contribution, by virtue of their access to communities and local knowledge, is indispensable to the success of the research project:

I also believe that we [LMIC researchers] should be the ones changing the narrative; we should be the ones setting the balance because we have the patients, we have the viruses and the parasite, and I don’t see why we shouldn’t just increase our bargaining power. Because without those viruses, without those patients, I don’t see how the research will go on. The problem is that our people [feel] so inferior, some people don’t believe in themselves… (S850S)

Lastly, LMIC research managers noted it was important for LMIC researchers to understand what is required for a collaboration to be equitable. For example, researchers need to be able to appropriately cost research in their context, consult with other actors to budget properly for indirect costs, and be part of the negotiations for equitable collaborations.

LMIC national governments.

Participants also noted the role of LMIC national governments in funding research institutions and research. One participant, based in a HIC, emphasised the importance of LMIC governments funding sustainable research:

Local pride in your research capacity is a difficult thing to sustain in the political environments that exist in Africa. But you know, sooner or later, someone in government must feel they are proud of having a good, trustworthy international institution. (G087N)

Another participant also reflected on the importance of national LMIC governments investing in research that would result in scientific independence:

The respect comes with investing in the capacities that you have and trying to create that complementary expertise that creates equity. Otherwise, you are always under somebody’s thumb, and it just doesn’t work right. (G987N)

While it was not disputed that LMIC governments should fund research, others asserted that it was not entirely true that LMICs do not fund research and rely exclusively on the financial support of international actors:

I don’t agree with that hundred per cent because when they [HIC stakeholders] said you don’t put money into the research, I keep asking when you want to calculate that asset of those institutions in Africa, they are government-owned institutions for the most [part]. The government pays the salary for everybody working there. The government owns the infrastructure. Are those things quantified? I think we need to have that quantification; we need to have that discussion… (S850S)

One participant also noted that regional institutions, such as the African Union could play a key role in ensuring that LMIC researchers and institutions are protected and that research is regulated beyond the level of the nation-state. This was seen as an act of solidarity to ensure that all countries in a region leverage their collective power to foster equity.

International collaborations have become the standard model for global health research. Given the financial, geographical, technological, and status differentials between HIC and LMIC researchers and institutions, there is a concern that collaborations may entrench unequal power relations rather than interrupt or transform them [ 13 , 15 ]. There have been attempts to provide corrective measures through normative accounts of what ought to be done and more practical guidance through the development of ethical frameworks. There are only a limited number of empirical studies published on the experiences of researchers and other stakeholders involved in international research collaborations. We conducted a qualitative study with scientists, researchers, and those involved with research management across LMIC and HIC contexts to understand their experiences of equity and what they thought contributed towards developing more equitable collaborations. From our results, we derived three significant themes related to equity within international health collaborations. The first refers to features of equitable collaborations, the second relates to reasons inequitable relationships persist, and the third focuses on the responsibilities of various actors for equitable relationships.

Our findings show that there are multiple components of equity. We highlight relational aspects of equity, such as a sense of belonging and trust. We also highlight structural elements which contribute to equitable collaborations. These include inclusive labour practices, contractual agreements, capacity building, research agenda setting, the inclusion of local communities from the onset of the research and ensuring that LMIC researchers are trained and effectively supported (by their institutions) in budgeting appropriately and paying for indirect costs. The dimensions of equity emerging from our findings, such as capacity building, fair funding arrangements, benefit-sharing, and trust, are supported by other empirical studies with similar findings [ 1 , 37 – 39 ]. These findings are consistent with normative accounts of what constitutes equity in global health research collaborations and extend them.

Our findings suggest that community members’ inclusion as key stakeholders in the research process is essential for equitable collaboration. While community engagement is increasingly becoming a standard requirement for research funding, communities are generally perceived as beneficiaries of research and not always included at the outset of research projects, including as stakeholders who are part of setting research priorities and being involved in research design, for example. The necessity of including communities at all stages of the research process as a feature of equitable collaborations is akin to what Pratt and de Vries propose by drawing on shared health governance as a theory for delineating what more ethical and effective community engagement model should entail [ 55 ].

Additionally, echoing the findings by Crane [ 13 , 56 , 57 ], our findings suggest that funders paying indirect costs for LMIC institutions was seen as critical to developing equitable collaborations. Properly funded indirect costs are essential to the sustainable development of the administrative and financial capacity to manage large international grants. They also cover other essential aspects critical to fostering equitable collaborations, such as developing the legal capacities to negotiate fair contracts, paying for subscriptions to international journals, fostering innovation and other necessary infrastructural requirements. Our interviewees described that a chronic failure to recover the total costs of research undermines the institution and its ability to provide an environment where research can thrive. They outlined two challenges: inexperience in determining the full economic cost of a project and disagreements about who is responsible for funding institutional costs of research. Concerning the latter, while there has been some research on the responsibilities of funders, more research is required on balancing the responsibility of LMIC states and the long-term impact of colonialism and subsequent structural adjustment policies [ 58 – 60 ], with diverse types of international funders and their specific duties and obligations [ 61 ]. Furthermore, it would be important to understand better whether research that is led by LMIC researchers and funded by calls limited to them only [ 62 ] does lead to more equitable collaborations.

Moreover, what was surprising was that our participants rarely discussed the responsibilities of HIC researchers and institutions. While this could be because we did not include many interviewees based in HICs, another way to interpret this omission is that prioritizing equity would conflict with other values and practices which are incentivized in symbolic and material ways such as the status and reward associated with being listed as first or senior author and attracting grant funding which may be important for career advancement. To this point, our participants reflected on the larger structural challenges which shape how research is practised and its impact on different researchers depending on their geographic and institutional location. Moreover, we do not think this omission reflects that our participants thought HIC actors do not have an important role to play. Instead, it may reflect how intractable it may be to change a system that does not necessarily incentivize prioritizing equity and one in which benefits are derived from maintaining the status quo. Hedt-Gauthier et al. have noted how researchers based at HIC universities are promoted through exclusively focussing on factors such as publication numbers and citations without any attention given to roles played by their LMIC counterparts or the extent of the efforts undertaken to create more equitable collaborations [ 18 ]. HIC institutions can, however, begin to incentivize HIC researchers for developing equitable practices [ 18 , 63 ].

Our participants did, however, discuss the role of LMIC research and institutions. While other studies have highlighted the responsibilities of HIC actors [ 64 ], there is a dearth of research on the role of LMIC actors. Our findings show that LMIC researchers need to become aware that they are legitimately contributing to the collaboration, and therefore also have the power to influence the nature of the collaboration. While the impact of unequal power relations was not denied, our participants noted that acquiescence on the part of LMIC researchers is also a function of choice and not necessarily compulsion. Related to this finding was the observation that LMIC researchers were also responsible for understanding how to cost and budget appropriately, with LMIC institutions providing the necessary training and support. Similarly, LMIC institutions were seen to be responsible for protecting their researchers, especially when negotiating for more equitable collaborations.

Limitations

We had initially set out to interview members of the HCA Consortium but failed to identify an extensive range of stakeholders who were willing and able to speak on the topic of equity. We, therefore, transitioned the project to include senior researchers and others with substantive experience in international research collaboration, which shifted the focus of our project somewhat. While even the HCA-related interviewees spoke to us about more general issues relating to science equity–and not specific issues to the HCA–this seemed like a logical thing to do and did not seem to us to interrupt our study, but it does mean that our findings are not specific to the HCA but more generally to global health research. A second limitation is that we conducted interviews in English and thus excluded non-English speaking participants from other LMICs and HICs, who speak only French, Portuguese or Spanish. To develop a more comprehensive understanding of research equity in global health research collaborations, it is imperative that the views and experiences of non-English speaking LMICs are interrogated in future research.

Supporting information

https://doi.org/10.1371/journal.pone.0258286.s001

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Understanding global health policy engagements with qualitative research: Qualitative evidence syntheses and the OptimizeMNH guidelines

• PMID: 34980487
• DOI: 10.1016/j.socscimed.2021.114678

Systematic reviews of qualitative evidence-or 'qualitative evidence syntheses' (QES)-have recently become an important form of knowledge production within the broader projects of 'evidence-based medicine' (EBM) and 'evidence-informed policymaking' in global health. Proponents of QES argue that these reviews offer a way to promote 'health systems thinking' and build a better understanding of local process and context in global health policy- and decision-making. EBM's detailed technical procedures for evidence synthesis, however, do not necessarily fit well with conventional qualitative research paradigms and there are concerns that subjecting qualitative research to EBM's logics and practices might fatally compromise both its epistemological integrity and political impact. This article addresses these concerns via a reflective case study of the use of qualitative evidence in the World Health Organization's (WHO) OptimizeMNH guidelines for task shifting in maternal and newborn health programs. When I first joined the team developing the evidence base for these health systems-oriented guidelines, I wondered whether the inclusion of qualitative research would result in a broadening of the forms of reason, experience and judgment that informed global health policy, or instead, be another disheartening example of how modern bureaucratic systems coopt, standardize, and complexity-reduce the alternative logics they encounter. While the integration of qualitative evidence did come at some cost to the depth and critical insights of the evidence we were reviewing, there were also important ways in which the technical procedures of evidence-based medicine were open to adaptation and transformation. The formal inclusion of qualitative evidence syntheses in these global guidelines did not represent-or produce-a dramatic about-turn in global health policy's hegemonic discourses and practices. It did reveal, however, that powerful systems of health governance like the WHO and evidence-based medicine are not inevitably closed, but in fact open to change, in often unpredictable ways.

Keywords: Critical theory; Evidence-based medicine; Evidence-informed policymaking; Health policy; Qualitative evidence synthesis; Qualitative research; Systematic reviews; Systems theory.

Copyright © 2021 Elsevier Ltd. All rights reserved.

• Evidence-Based Medicine / methods
• Global Health*
• Health Policy*
• Infant, Newborn
• Policy Making
• Qualitative Research

EDITORIAL article

Editorial: qualitative research applied to public health: new topics and insight.

• 1 Department of Nursing, Physiotherapy and Medicine, University of Almería, Almería, Spain
• 2 Ciencias de la salud, Universidad Autónoma de Chile, Santiago, Chile
• 3 Department of Physiotherapy, University of Alcalá, Alcalá de Henares, Madrid, Spain

Editorial on the Research Topic Qualitative research applied to public health: new topics and insight

The concept of public health refers to the science and art of preventing diseases and promoting, protecting, and improving health ( 1 ). The essential functions of public health include monitoring the health of the population, keeping watch on risk factors, guaranteeing access to healthcare services, and promoting research, among others. Although there have been many advances over the years in vaccine development, emergency response, the promotion of sexual and reproductive health, and access to medicine, a single solution has yet to be found which meets the needs of the population in different health systems ( 2 ). Classical epidemiology studies the phenomena of health and disease in the community, considering the population as a group of individuals without considering the many individual and social factors. Qualitative methodology contributes to the study of the determinants of health and disease, healthcare planning, the detection of needs, and the evaluation of interventions from the experiences of individuals and societies ( 3 ). In the face of a unitary, measurable, and external reality to the cognoscente, there is a reality which each person creates within the framework of their culture, tradition, and history. Therefore, the implementation of a dual research perspective in public health must involve quantitative approaches that address the generality of the study problem, but also qualitative ones, which include multiple layers of diversity and the range of lived experiences ( 4 , 5 ). As reflected in our Research Topic, the experiences of patients, professionals, and families are key to understanding public health problems.

Research does not occur isolated from the interests and powers of the academic, scientific, personal, or theoretical field ( 6 ). Together with the technical interest in knowing the reality in order to transform it ( Zang et al. ), practical interest points to the intersubjective understanding of the health-disease process, and emancipatory interest points to actively taking charge of this process. In line with studying the experiences of patients, Wang et al. found specific action plans, medical feedback, and periodic records as facilitators of adherence to lifestyle prescriptions among patients with non-alcoholic fatty liver disease. Bailey-Davis et al. found that obese patients undergoing treatment in primary care expect personalized treatment options and referrals to effective community programmes. Campaña et al. , suggests that being a woman with a low educational background coming from the public health system outside of the capital could contribute to barriers for effective healthcare for lung cancer in Chile . Gabay , proposes that positive experiences in the relationship between the patient and nurse instill hope for being discharged in intensive care units. Experiences of young generations on the social problems of parental care are addressed by Peng et al. , emphasizing that governments should guarantee that adult children receive help to balance their work, life, and parental care responsibilities. Chen et al. found that major epidemics accelerate and promote major social changes, technological development, political, and economic measures. Experiences of members of public health associations in tracking and treating COVID-19 cases in migrants and refugees are studied by Dawson-Hahn et al. . Qualitative research also studies the experiences of evaluating public health intervention programmes, such as the case of Thoumi et al. when addressing health inequalities in Latinx communities in North Carolina; or the perspective of professionals on the barriers, facilitators, and elements for improving the +AGIL Barcelona programme ( Canet-Vélez and Solis-Navarro ). Teaching-learning experiences are also addressed by qualitative research in the different stages. In undergraduate studies, Zhu et al. suggests that a synthesis of knowledge and practice is needed to improve the professional skills of undergraduate nursing students. In postgraduate studies, Sánchez-Muñoz et al. found that the residency period is important in the training and acquisition of skills as a Family and Community Nursing Specialist Nurse in Spain, and improvements are needed to guarantee quality training and more visibility. Myroniuk et al. recommends involving health sciences students in public health programmes aimed at the community. Experiences of public healthcare professionals have also been studied in our Research Topic. Canet-Vélez et al. suggests that legal regulation has provided a security framework for nurse prescribing. However, strategies are needed for its comprehensive development, public acceptance and to give visibility to nurse prescribing at an international level. Along with practical interest, emancipatory interest is key in qualitative research. Researchers analyze public health problems through self-reflection, seeking social transformation, and participant involvement for change. This positioning generates empowerment, leading patients to participate in decision-making and take charge of their own health. Along these lines, Röger-Offergeld et al. studied how the participation of women as co-researchers leads to their social empowerment beyond the results of the research itself. Melhem et al. found that health literacy and empowering survivors of colorectal cancer promotes a more positive experience when interacting with healthcare systems.

Gadamer and Habermas criticize the excessively objectified and decontextualized nature of positivism and instrumental reason in 20 th century philosophy, recognizing the role of the subject in the creation and acquisition of knowledge and understanding ( 7 ). Qualitative research is increasingly common in contemporary health sciences, helping to incorporate the perspectives of the participants (patients, family, professionals, managers, etc.) in the design and development of the research, treating them as equals. Qualitative public health researchers could strengthen dialogue with conventional research paradigms by fostering an understanding of interdependencies ( 8 ). Investigating social determinants and health inequities requires epidemiologists and public health researchers to expand theories, research methodologies, and involve all participants ( 9 , 10 ). The perspective of those who use public health services differs from the professional, clinical or academic perspective ( 11 ). Qualitative research enables an understanding of how people interpret and respond to public health policies, thus weighing the sources of academic and experiential knowledge ( 12 ). The main strength of qualitative research is the in-depth and rich descriptions of data that is studied ( 13 ). For this reason, it is used in global public health when the problems cannot be analyzed from traditional quantitative approaches, when “silenced voices” are not heard, or when sociocultural contexts are key in decision making and problem solving ( 14 ). This contribution, which complements epidemiological research, is key for all knowledge disciplines that develop research on global public health and on all communities in particular.

Author contributions

JG-M: Writing—review & editing. MR-F: Writing—review & editing. IF-M: Writing—review & editing. SN-N: Writing—review & editing. IS: Writing—review & editing.

The author(s) declare that no financial support was received for the research, authorship, and/or publication of this article.

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The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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Keywords: public health, qualitative research, experiences, nursing research, health sciences research

Citation: Granero-Molina J, Ruiz-Fernández MD, Fernández-Medina IM, Núñez-Nagy S and Suazo Galdames IC (2024) Editorial: Qualitative research applied to public health: new topics and insight. Front. Public Health 12:1371938. doi: 10.3389/fpubh.2024.1371938

Received: 17 January 2024; Accepted: 26 January 2024; Published: 06 February 2024.

Edited and reviewed by: Christiane Stock , Corporate member of Freie Universität Berlin and Humboldt-Universität zu Berlin, Germany

Copyright © 2024 Granero-Molina, Ruiz-Fernández, Fernández-Medina, Núñez-Nagy and Suazo Galdames. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

*Correspondence: José Granero-Molina, jgranero@ual.es

Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.

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• Volume 3, Issue 5
• Systematic debriefing after qualitative encounters: an essential analysis step in applied qualitative research
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• http://orcid.org/0000-0002-8634-9283 Shannon A McMahon 1 , 2 ,
• http://orcid.org/0000-0001-8569-5507 Peter J Winch 2
• 1 Institute of Global Health , Heidelberg University , Heidelberg , Germany
• 2 Department of International Health , Johns Hopkins Bloomberg School of Public Health , Baltimore , Maryland , USA
• Correspondence to Dr Shannon A McMahon; mcmahon{at}uni-heidelberg.de

Conversations regarding qualitative research and qualitative data analysis in global public health programming often emphasize the product of data collection (audio recordings, transcripts, codebooks and codes), while paying relatively less attention to the process of data collection. In qualitative research, however, the data collector’s skills determine the quality of the data, so understanding data collectors’ strengths and weaknesses as data are being collected allows researchers to enhance both the ability of data collectors and the utility of the data. This paper defines and discusses a process for systematic debriefings. Debriefings entail thorough, goal-oriented discussion of data immediately after it is collected. Debriefings take different forms and fulfill slightly different purposes as data collection progresses. Drawing from examples in our health systems research in Tanzania and Sierra Leone, we elucidate how debriefings have allowed us to: enhance the skills of data collectors; gain immediate insights into the content of data; correct course amid unforeseen changes and challenges in the local context; strengthen the quality and trustworthiness of data in real time; and quickly share emerging data with stakeholders in programmatic, policy and academic spheres. We hope this article provides guidance and stimulates discussion on approaches to qualitative data collection and mechanisms to further outline and refine debriefings in qualitative research.

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• qualitative study

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ .

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Summary box

The quality of data in qualitative global health research is stronger when researchers engage local interviewers in a systematic debriefing process.

Understanding interviewers’ strengths and weaknesses in real time allows researchers to enhance interviewer skills and thus data quality.

Through systematic debriefing, researchers can identify and address gaps in the data; capture nuances and other non-verbal information; enhance intellectual partnership within teams; triangulate data; and build theory.

Drawing from our research experiences in Tanzania and Sierra Leone, this paper outlines the process and value of debriefings.

Introduction

A major goal of qualitative research, as applied in global public health, is to give voice to those whose lives are affected by health policies and programs, but whose ability to be heard by those in power and to effectively change health systems and structures is limited. The archetypal means through which such data are collected is the interview, a one-on-one encounter where a researcher and a respondent ‘are talking and asking questions of one another’ usually with the help of an interview guide. 1–3 During the 1–2 hours that a typical interview lasts, a researcher must juggle competing demands: maintaining the interest and openness of the respondent, listening for responses that merit further probing, capturing unspoken cues and gestures, all while simultaneously ensuring that the data collected are relevant to the health issue of interest. 1 4

In the academic ideal, qualitative research is undertaken by those who possess sociocultural understanding of the study context, and are formally trained in qualitative theory, methods and analysis. In global public health research this ideal is often not feasible. Instead, research teams commonly engage locally based qualitative data collection teams who possess essential knowledge in terms of context and language, but who lack formal qualitative training. These teams are routinely trained by an external research lead, an individual who possesses a graduate-level education in public health and qualitative research, but whose contextual or linguistic knowledge is insufficient.

In the ‘local team with outside technical support’ model of qualitative research—henceforth referred to as applied qualitative research or AQR—technical support takes different forms across five overarching phases in the research. See table 1 for a breakdown of tasks for the data collection team and research lead, respectively, during the preparation and execution of data collection, transcription and translation of files, data analysis and study write-up.

• View inline

Organization of qualitative research and qualitative data collection teams

This practice paper focuses on the data collection phase of the table with an emphasis on debriefings, the process where a research lead interviews data collectors soon after a data collection activity. We view debriefings as a necessary element in qualitative research, particularly as the field comes to embrace styles beyond the conventional academic ideal (one person enacting the research process from conception to publication). Furthermore, while we observe a general consensus regarding the rationale and process for undertaking many points in the five-step table ( table 1 ), we see that debriefings receive relatively little attention in the literature and in trainings on qualitative research for public health. When debriefings are mentioned in publications, including our own, 5 6 there is minimal insight into what the debriefing entailed, how it was conducted or how debriefings fundamentally informed the data collection or analysis process. Finally, given that in AQR, much of the data are collected by individuals who have limited training in qualitative research or are more familiar with quantitative survey administration, we urge researchers to more thoughtfully consider discussions on process (ensuring that the data are collected in an iterative i fashion, 7 that the data set is responding to the research question and that the skills of data collectors are strengthened in real time) rather than on outputs (transcription and coding). We now outline what debriefings are, how their purpose shifts in the process of data collection and how debriefings have amplified trustworthiness in our own research. 8 9

What are debriefings?

Debriefings are a discrete moment in the qualitative data collection process where a research manager sits with a data collector (or data collection team) to discuss the tenor, flow and resulting findings from a recently undertaken data collection activity. Ideally conducted after the close of a day’s data collection, debriefings are an essential supplement to qualitative methods such as focus groups, interviews or observations. ii , 10 During debriefings, the research lead takes copious notes. These notes then serve as one component of the full qualitative data set, and methods used to analyze transcripts and observational memos are also applied to debriefing notes.

Debriefings spark immediate reflection on emerging findings; they force data collectors to think through the data that have emerged and to better position findings relative to data collected by fellow data collectors either that same day or to date. Debriefings allow research teams to identify gaps in the data collected and to redirect course—whether refining a line of inquiry, reconceptualizing a research question, opting when or whether to seek out alternative perspectives (such as negative or disconfirming cases), or adding or eliminating a respondent group or research method. Debriefings are the best protection against an unfortunate scenario where, long after the close of data collection, transcripts reveal that the research team did not pursue essential lines of inquiry, or worse, that the data collected will not be able to respond to research aims. For examples of debriefing templates, see online supplementary appendices 1 and 2 .

How should debriefings be done?

Debriefings serve a different purpose as the process of data collection unfolds.

At the outset of data collection, debriefings are one-on-one (the lead researcher interviews the interviewer) and largely procedural in content. In our studies, these early debriefings have been used to learn from the interviewer what could be done to improve the process of data collection. We ask the interviewer questions such as: Is it feasible to find and interview respondents in a private setting (or is the community trailing after the interviewer-respondent pair to listen in on the interview)? Did recording devices work (let’s have a quick listen and upload the recording)? Are the consent forms understandable and did you have them signed or fingerprinted (let’s put them in this waterproof folder)? Are the instruments too short or too long? Do we have concerns about respondents growing tired or bored in an interview and if so, what do you think we should do about this informant fatigue? The earliest debriefings also allow the research lead to gauge the interviewers’ strengths and weaknesses as both interviewers and qualitative researchers. Did the interviewer appear interested, observant and engaged in the data collection activity? Did they probe on valuable lines of inquiry? Did they feel capable of shifting the interview back on track if it digressed in a manner that was not informing the research question? Did they capture non-verbal cues? What would they like from the research lead in terms of troubleshooting through a difficult process? Early debriefings are a means to ensure that the messages conveyed during trainings whether procedural (getting consent) or scientific (probing) are gelling among the data collection team, and to refine or reinforce these messages if they are not.

Interview tips,* a refresher

Adhere to ethical principles

Ask for consent.

Ensure privacy throughout the interview or focus group discussion.

Convey in your actions and your questions that you respect the respondent’s autonomy.

Remove any mystery about the recorder/recording device

Put the recorder within reach of the respondent.

Tell the respondent they can turn it off at will and show them how to do this.

Assure the respondent that only researchers will listen to the recording.

Use all senses to capture details

Recognize pauses long and short.

Capture what is spoken and unspoken (gestures, glances, fidgeting, fear, smiles, sincerity, pride).

Note the smells, sights, the ‘texture’ of the interview.

Keep a conversation comfortable

Start simple.

Ask uncomplicated, unintrusive questions.

Be prepared and open to responding to questions about who you are and why you are there.

Avoid double-barrelled questions.

Know when to pause.

Give time for responses.

Refer back to comments or phrases made by the respondent in the course of the interview.

Follow the golden rules of great interviews

Avoid the temptation to interrupt the respondent.

Use open-ended questions and probes.

Don’t attach your interpretation to a response.

Ask "remarkable questions in an unremarkable tone".*

Do not judge—not with your voice, body or face.

Avoid scientific jargon

Words and phrases like ‘plural health systems’, ‘structural violence’ and ‘stigma’ "sap the power and beauty of plain language".*

Be reflexive, be conscious of your role in this endeavor

Memo how you, as the human being you are, shaped this interview.

End every interview with this question: ‘Is there anything I should have asked you that I did not ask you?’

If the respondent offers some suggestions—ask those questions!

*Informed by Harrington’s 4  ‘Intimate Journalism: The Art and Craft of Reporting Everyday Life’.

As data collection progresses, the nature of the debriefing usually shifts. Procedural questions become less necessary as processes have become routinized. There is also less one-on-one engagement between the research lead and individual interviewers in favor of a debriefing session, which resembles a focus group (with the research lead serving as both a moderator and notetaker). During the debriefing session, each interviewer provides a 2–4 min summary of their interviews or focus groups, with a special interest in describing key points or new findings from their interview. Conversations regarding triangulation (comparing and contrasting findings across data collectors or data collection methods) and topic saturation (the point when similar ideas and insights are heard again and again) typically begin to emerge in this phase as interviewers are encouraged to jump in when they could contextualize, confirm or dispute a piece of information based on their own interview. For both the research lead—and the data collection teams—this is among the most enjoyable and enlightening periods of the research process. Group debriefings prompt new ways of looking at an issue, help the interviewers gauge whether a follow-up interview is necessary, force research teams to think through how to reframe old questions or create new questions for subsequent interviews, and serve as reminders to the team that an interview is a short window into a person’s life during which contextualization of experiences occurs. The debriefing often sparks vibrant conversations among data collection teams about social desirability bias, thoughts on power, autonomy and decision-making within households and communities, and the role of the interviewer and research teams generally in terms of advocacy, human rights and social responsibility. Along with conversations on triangulation, the research team typically begins to discuss reflexivity, questioning how their social standing, personal experiences and inherent biases affect the nature of the interviews.

In the final phase of the debriefing process, the research lead is almost wholly removed from the process. The team nominates one of the data collectors to serve as moderator and another data collector to serve as a notetaker. The language of the group debriefing often switches from English (or other official language in the country) in favor of the local language (or the preferred language of the data collection team and the language of the interviews). During this phase, the research lead begins to build theories, devise an outline of preliminary findings and draw up a list of key local phrasings (emic terms) that may be valuable when presenting the research to stakeholders. In our studies, at this phase of data collection, we begin to develop a slide deck that will be later presented to principal investigators and others on the conclusion of data collection.

The final debriefing occurs on the day after the conclusion of data collection. During this session, the research lead presents the slides of preliminary findings to data collectors. Slides are edited based on feedback, and data collectors are invited to practice and then present portions of the presentation to an audience of academic, ministerial or programmatic peers.

Debriefings in Tanzania

In Tanzania, debriefings informed a fundamental shift in how the research team conceptualized the research question, ‘How do women and their spouses/support networks make decisions regarding where to seek care throughout the maternal care continuum?’ 12 Conducted in 2011, our team initially sought to test a hypothesis that care seeking for childbirth was largely determined by factors such as cost, risk, distance and intrahousehold negotiation. Following debriefings after the earliest interviews, it became apparent that the main issues driving women and their communities away from facilities centered on issues of disrespectful maternity care by providers toward patients. Thinking that these earliest interviews represented an outlier, the data collection continued to rely on the initial data collection instrument, which did not emphasize patient–provider relationships and made no mention of disrespectful or abusive care. As data collection progressed, however, themes related to disrespect continued to emerge. The research lead presented the findings to the study’s principal investigators, who confirmed that this line of inquiry warranted pursuit. The research lead then began a literature review to identify studies that emphasized disrespectful care, and—together with the study team—modified the tools. Had the data collectors not been in regular contact with one another and the research lead, they may have disregarded or downplayed findings related to disrespect, they may have been unsure how to probe about disrespect and abuse, or they may have felt hesitant to undertake a line of inquiry that was not outlined in the tool (and may spark politically contentious debates). Along with allowing the research team to recognize and then triangulate findings related to abuse, debriefings also allowed for immediate comparisons of how male-female pairs describe their role throughout care seeking for childbirth. This immediate comparison (and the incongruences that emerged when comparing accounts across husband-wife pairs) not only generated animated discussions within the team, but also identified another new line of probing (related to births before arrival), and guided decisions regarding whether and when to conduct follow-up interviews. 13

Debriefings in Sierra Leone

In Sierra Leone, debriefings strengthened our study by enhancing the research team’s reflexivity, ability to build rapport and approach to sampling. Data were collected in 2010 with the aim of examining how families understood and manage childhood illnesses. 14 In the course of the earliest debriefings, it became apparent that both researchers and respondents were weary of the data collection endeavor. Data collectors said they were shaken following discussions about child illness and child death with respondents who represented the poorest of the poor. Debriefings presented an opportunity for the team to talk through their anxiety and devise coping strategies collectively. Data collectors also described challenges of building trust with respondents, given strained relations in the wake of the country’s civil war. Several respondents were frightened by the audio recorder, concerned that their voice may be shared with a much wider audience (or used to inflict harm on them or their families). Many community members were also bothered by the presence of outsiders (the data collection team) in their communities; expressing incredulity that outsiders would travel long distances to ask about child health. The data collection team used debriefings to reconsider how to best present the team and explain the purpose of the research to community leaders (in a manner that would ensure all involved that this was a peaceful endeavor, that there was no ill will or underhanded intention of the data collection team toward the community). In terms of qualitative methods specifically, debriefings served as an opportunity to reiterate messages conveyed in the data collector training. Many members of the study team had more experience with quantitative rather than qualitative data collection, so there was a tendency at the outset of data collection to use interview guides as surveys—asking questions in exactly the manner they were written with no probing. Debriefings allowed the research lead to reiterate the open nature of interviewing, and provided a forum for data collectors with more qualitative experience to demonstrate how probing is best done. Finally, debriefings allowed the team to identify respondent types whose insights could inform the research question, but who were not initially a focal group for the study (first wives, mammy queens (female leaders), spiritual healers and traditional birth attendants). 15 These individuals were not initially identified as key informants, but their essential role in deciding whether and when to take a child to a health facility emerged in the earliest interviews and compelled the team to change course in favor of including these individuals.

Systematic debriefings are a necessary complement to more conventional qualitative approaches. Debriefings make it possible to enhance the adaptable, thoughtful and empathetic-yet-questioning nature of qualitative research among data collection teams (thereby improving both the quality of data collected and the capacity of those collecting the data), to correct course in the event of unknowable changes, insights or challenges in a given context, and to quickly share emerging data with stakeholders in programmatic, policy and academic spheres. We have outlined herein a series of steps to conduct debriefings and demonstrated how we have used debriefings in studies across two contexts. We hope this article sparks interest and debate in the literature in terms of how debriefings could be used to improve the quality of qualitative data.

Supplemental material

Acknowledgments.

We are thankful to the qualitative data collection teams we have worked with and debriefed with through the years. In Tanzania: Zeswida Ahmedi, Santiel Mmbaga, Zaina Sheweji, Amrad Charles, Emmanuel Massawe, Maurus Mpunga, Rozalia Mtaturo. In Sierra Leone: Robert Sam-Kpakra, Agnes Farma, Abdul Karim Coteh, Emmanuel Abdulai, Alie Timbo, Mohamed Lamin Sowe, Aminata Alhaji Kamara, Daniella Kopio, Kadie Kandeh, Jestina Lavahun, Jeremiah Sam Kpakra, Lamin Bangura, Isatu Kargbo. We thank Dr. Kerry Scott for her review of this article and for contributing her own debriefing template as an appendix. We thank Prof. Walt Harrington for sharing his wisdom on the art and craft of interviewing. Finally, we acknowledge financial support by the Deutsche Forschungsgemeinschaft within the funding programme Open Access Publishing, by the Baden-Württemberg Ministry of Science, Research and the Arts and by Ruprecht-Karls-Universität Heidelberg.

• Harrington W
• Bakshi SS ,
• McMahon S ,
• George A , et al
• McMahon SA ,
• Kennedy CE ,
• Winch PJ , et al
• Campanelli PC ,
• Martin EA ,
• Lincoln YS ,
• George AS ,
• Chebet JJ , et al
• Rao SR , et al
• Yumkella F , et al

↵ i An iterative approach refers to the process of adapting and updating data collection tools (but possibly also methods and sampling) in light of information gleaned from data collected earlier.

↵ ii Beyond qualitative research, debriefings have also been described as a way to examine response error in quantitative surveys, 7 and as a way to interrogate differing assumptions of quantitative and qualitative researchers in a mixed methods study. 10

Handling editor Seye Abimbola

Contributors The two authors contributed equally to the manuscript.

Funding The National Institute of Mental Health of the National Institutes of Health supported coauthor SAM (Award F31MH095653) throughout her PhD work. The Olympia-Morata-Programm supports her current position as an Assistant Professor at Heidelberg University.

Disclaimer The funders had no role in the decision to publish, or preparation of the manuscript. The content is the responsibility of the authors and does not necessarily represent the views of any funder.

Competing interests None declared.

Patient consent Not required.

Provenance and peer review Not commissioned; externally peer reviewed.

Data sharing statement No additional data are available.

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A course focused on the principles and rigorous application of qualitative methods in formative, operational, evaluation and policy research in infectious disease in diverse global settings. Teaching includes didactical lectures, dedicated periods for interactive exercises and short topical presentations and/or panel discussions. There will be opportunities to work in small groups and develop and present draft research protocols and related outputs under the mentorship of course faculty.

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Qualitative methods can assess the social and behavioural contexts, and the complex determinants, impacts and outcomes of illness and disease control efforts, including public health programs, policies, and technologies. There is growing interest to integrate qualitative methods into traditional operational and biomedical research to understand challenges to healthcare seeking behaviour and healthcare service delivery, and to better understand how and why some interventions and technologies are successfully (or less successfully) implemented and utilized. This course will build participants’ research literacy to use qualitative methods to inform, innovate, contextualize, evaluate, and strengthen the delivery and utilization of healthcare services and technologies for infectious diseases (e.g., tuberculosis, HIV, COVID-19) in lower-and middle-income settings.

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The course includes didactic expert lectures on qualitative study design, implementation, analysis, and dissemination, interactive group exercises to apply and practice the lessons learned, as well as short topical presentations and/or panel discussions. Each day will begin with expert lectures on qualitative study design, implementation, analysis, and dissemination; followed by group exercises to apply and practice the lessons learned as well as short topical presentations and/or panel discussions. The day will end with small group sessions to develop protocols and related outputs under the mentorship of course faculty.

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• Published: 07 February 2024

Is qualitative social research in global health fulfilling its potential?: a systematic evidence mapping of research on point-of-care testing in low- and middle-income contexts

• Janet Perkins   ORCID: orcid.org/0000-0003-2868-1752 1 ,
• Sarah Nelson 2 ,
• Emma Birley 2 ,
• Emilie Mcswiggan 2 ,
• Marshall Dozier 3 ,
• Anna McCarthy 4 ,
• Nadege Atkins 2 ,
• Eldad Agyei-Manu   ORCID: orcid.org/0000-0002-2712-0198 2 ,
• Jasmin Rostron   ORCID: orcid.org/0000-0003-2960-2892 2 ,
• Koichi Kameda   ORCID: orcid.org/0000-0003-1337-6501 5 ,
• Ann Kelly   ORCID: orcid.org/0000-0003-4658-2133 6 ,
• Clare Chandler   ORCID: orcid.org/0000-0001-6499-7522 7 &
• Alice Street   ORCID: orcid.org/0000-0001-7874-0234 1  

BMC Health Services Research volume  24 , Article number:  172 ( 2024 ) Cite this article

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Qualitative social research has made valuable contributions to understanding technology-based interventions in global health. However, we have little evidence of who is carrying out this research, where, how, for what purpose, or the overall scope of this body of work. To address these questions, we undertook a systematic evidence mapping of one area of technology-focused research in global health, related to the development, deployment and use of point-of-care tests (POCTs) for low-and middle-income countries (LMICs).

We conducted an exhaustive search to identify papers reporting on primary qualitative studies that explore the development, deployment, and use of POCTs in LMICs and screened results to identify studies meeting the inclusion criteria. Data were extracted from included studies and descriptive analyses were conducted.

One hundred thirty-eight studies met our inclusion criteria, with numbers increasing year by year. Funding of studies was primarily credited to high income country (HIC)-based institutions (95%) and 64% of first authors were affiliated with HIC-based institutions. Study sites, in contrast, were concentrated in a small number of LMICs. Relatively few studies examined social phenomena related to POCTs that take place in HICs. Seventy-one percent of papers reported on studies conducted within the context of a trial or intervention. Eighty percent reported on studies considering POCTs for HIV and/or malaria. Studies overwhelmingly reported on POCT use (91%) within primary-level health facilities (60%) or in hospitals (30%) and explored the perspectives of the health workforce (70%).

Conclusions

A reflexive approach to the role, status, and contribution of qualitative and social science research is crucial to identifying the contributions it can make to the production of global health knowledge and understanding the roles technology can play in achieving global health goals. The body of qualitative social research on POCTs for LMICs is highly concentrated in scope, overwhelmingly focuses on testing in the context of a narrow number of donor-supported initiatives and is driven by HIC resources and expertise. To optimise the full potential of qualitative social research requires the promotion of open and just research ecosystems that broaden the scope of inquiry beyond established public health paradigms and build social science capacity in LMICs.

Peer Review reports

The era of ‘global health’ has been characterised by a growing emphasis on technical solutions to what are ultimately problems of health inequities [ 1 , 2 ]. In recent years, mobile, easy-to-use and affordable technological innovations, such as pharmaceuticals, m-health devices, and rapid diagnostic tests, have become increasingly central to efforts to improve access to life-saving prevention, diagnosis, and treatment in places where existing health systems and infrastructures are under-resourced [ 1 , 2 , 3 , 4 , 5 ].

Qualitative social research has made widely recognised contributions to understanding the implications and effects of this innovation-focused agenda, especially in terms of the dynamic interrelationships between technologies, infrastructures, health systems, and human relations [ 6 , 7 , 8 , 9 ]. This research has been undertaken across numerous disciplines, including public health, health economics, anthropology, sociology, human geography, and science and technology studies, and has taken a wide variety of forms, from stand-alone historical and ethnographic studies of technological innovation and intervention (e.g., [ 2 , 10 , 11 , 12 ]), to numerous operational and evaluative studies of technical interventions (e.g., [ 13 , 14 ]).

Yet to date there has been little systematic analysis of the context, scope, and extent of social research for specific global health technologies; to understand the kinds of social science questions that are commonly posed about global health technologies, the methods utilised to answer those questions, who undertakes the research, and to what purpose. Systematic mapping of the social research ecosystem in global health is important if we are to understand the full contribution made by this body of work, but also its limitations in terms of the voices and perspectives that are represented and the potentially important questions and topics omitted. In this paper, we provide a systematic evidence mapping of qualitative social research to answer these questions in one area: the development, deployment, and use of point-of-care tests (POCTs) in low-and middle-income country (LMIC) settings. Our aim is to prompt reflection on what qualitative social research is for; that is, what work we want it to do in global health.

POCT devices that do not rely on modern laboratory equipment or highly skilled staff, are portable and easy to use, and provide rapid turnover of results have the potential to transform healthcare in LMICs by dramatically improving access to and speed of diagnosis [ 15 , 16 , 17 , 18 ]. Strengthening diagnostic systems is widely viewed as essential not only to clinical management but also to tackling antimicrobial resistance, achieving universal health coverage, rising costs of new medicines, and emerging disease threats and epidemics [ 19 , 20 , 21 ]. In recent years, POCTs have become a near-ubiquitous feature of international disease control, elimination, and health systems strengthening programmes. The growing importance of POCTs to global health priorities is reflected in the release of the WHO Model List of Essential Diagnostics List (EDL) in 2018 [ 22 , 23 ], which currently lists 32 POCTs as the basic diagnostic tests that should be made available for use in health facilities without laboratories [ 24 , 25 ]. The COVID-19 pandemic heightened awareness of the importance of diagnostics and fuelled calls for global access to be accelerated and decentralised, for example through expanding the use of POCTs in community settings [ 26 ].

The ambition for expansion of POCTs in LMICs over the past three decades has inspired a substantial body of qualitative social research focused on these technologies. This body of research is yet to be assessed for whether it responds to the breadth of health priorities in countries, whether its funding and authorship reflect the full social and geographic spread of knowledge on this topic, and the scope of the research questions and objectives that underpin this research.

This systematic evidence mapping of qualitative social research focused on the development, deployment, and use of POCTs in LMICs, and was guided by two research questions:

Research question 1: Where, by whom, and how has qualitative and social science research on POCTs in LMICs been produced?

Research question 2 : What is the scope and extent of existing qualitative and social science research on POCTs and what are the limitations?

We aim to provide a guide to the growing field of qualitative social research on diagnostics for social scientists, qualitative public health researchers, and global health actors by mapping its key contributions, strengths, weaknesses, and areas of density and sparsity. Systematic evidence mapping also has the potential to generate data on the social and economic conditions of knowledge production in global health research and provide insights to how those conditions might shape the scope of the evidence base. We argue that a reflexive approach to the role, status, and contribution of qualitative and social science research is crucial to identify the contributions it can make to the production of global health knowledge and understanding the roles technology can play in achieving global health goals.

Methodology

Search strategy.

We conducted an exhaustive search of academic databases to identify studies related to ‘point-of-care testing’, ‘qualitative research’, and ‘low- and middle-income countries’. For each category, we identified multiple keywords taking inspiration from other scholars to develop searches for LMICs [ 27 ], POCTs [ 28 ], and qualitative research [ 29 , 30 , 31 ], and identified their index terms in bibliographic databases.

We searched the following databases: MEDLINE, Embase, Anthropology Plus, Web of Science, CINAHL, Scopus, Global Index Medicus, World Health Organization, Global Health (CABI), and ProQuest Dissertations and Theses Global database.

Guided by the University of Edinburgh Information Specialist (MD), we developed targeted search strategies for each database (see supplementary material (see Additional file 1 ). We used the PRESS checklist [ 32 ] to appraise our search strategies. We searched all databases for studies published from 1 January 2000 to 7 October 2022, as the field of POCTs is shifting so rapidly that we assumed evidence prior to this is less likely to be relevant to the contemporary context. In a subsequent search, we reviewed the references and citations of all papers meeting the inclusion criteria in the Web of Science to identify studies not initially picked up. We also manually searched books and journals less likely to be picked up in the search.

Eligibility criteria

We included papers reporting on primary studies employing qualitative designs and exploring any POCT designed to detect health disorders in LMICs. We approached papers which reported on mixed-methods studies with caution. Although we did not carry out a specific search to identify mixed-methods studies, we included papers drawing from studies which were mixed-methods in design, but in which the qualitative component was epistemologically distinct from the quantitative component; i.e., demonstrating a non-positivist research epistemology, and in which the qualitative component was reported in a separate publication from the quantitative component of the study. We purposefully excluded studies which demonstrated a positivist epistemology since our aim was to focus on the contribution that interpretivist, constructivist, and critical ‘social’ epistemologies could offer as a balance to positivist epistemologies [ 6 , 7 ].

We did not place any limits on language and did not exclude papers based on methodological limitations of the studies (see Additional file 2 ).

Source selection

After carrying out the search, we removed duplicates from the set of identified papers. Using Covidence software, paper titles and abstracts were independently screened by two team members. Full texts of papers which passed this phase were retrieved and eligibility for inclusion independently assessed by two members of the team. Disagreements regarding inclusion or exclusion reason were reviewed by a third team member and then resolved through discussion.

Data extraction and analysis

From each included study we extracted (a) publication data, i.e., author, year, title, funder, and author institutions, and (b) descriptive data, i.e., study context, methods, geographical locations, health conditions concerned, POCT type, biological sample, purpose of POCT, setting, stage(s) of the POCT life cycle studied and perspective(s) considered. Data were extracted from each paper by two team members and disagreements resolved through discussion.

Data were cleaned by another team member not involved in data extraction. We then used this data to generate descriptive analyses related to the categories of interest using Excel.

Included studies

Figure  1 presents the PRISMA flow diagram of the paper search and selection. Through the database search, 13,221 papers were identified. After removing duplicates, 7041 papers remained for title and abstract screening, among which 224 met the inclusion criteria to move to full-text screening. Full text articles were retrieved for 223 articles, of which 125 met the inclusion criteria after full-text screening. Through the subsequent reference and citation search of the 125 included papers, we identified an additional 405 papers for screening. In the manual search, we identified six further papers and book chapters. After title and abstract screening of these 411 papers from the reference and citation and manual search, 21 were retrieved for full-text screening. Thirteen met the inclusion criteria. This resulted in a total of 138 articles included in the review. While most of the sources meeting our inclusion criteria were English-language, seven Portuguese and one Spanish paper met our criteria and were included in the analysis. Data from these papers were extracted and analysed by team members fluent in these languages.

Prisma flow diagram

Spatial and temporal distribution of research

Figure  2 presents the number of papers meeting the inclusion criteria over time. No papers were included prior to 2007. Between four and eight papers were included for each year from 2010–14. For 2015 the number of included studies increased to 16, and between 12–16 studies were identified for each year from 2016 to 2021, suggesting a possible upward trend. Ten studies from the first nine months of 2022 were included.

Chronology of included number of publications per year, January 2007-September 2022. 2022 data for January–September 2022 only

Figure  3 illustrates the geographic distribution of funding institutions, research sites and the locations of institutional affiliations for the first author and for all other authors of the papers.

Study funding, site and authorship location

The upper left-hand map of Fig.  3 presents the location of the funding institutions papers credited with providing financial support to the different studies. Across the 138 papers, 167 funding credits were reported, spanning 62 distinct organisations/institutions. Among the 167 reported funding institution credits, United Stated-based institutions were credited with providing financial support in 50% ( n  = 84) of cases, and United Kingdom-based institutions in 20% ( n  = 33) of cases. Twenty-five percent ( n  = 42) of the reported credits were of institutions located in other countries spanning high-income countries (HICs) (Australia, Belgium, Canada, Denmark, German, Japan, Netherlands, Norway, Sweden and Switzerland). Only four funding institutions based in LMICs were represented (Brazil, South Africa, Tanzania and Uganda), comprising 5% ( n  = 8) of the reported funding institution credits. The Bill and Melinda Gates Foundation was the most reported funding institution, credited in 20% ( n  = 27) of all papers. The United States National Institute of Health was the second most credited funding institution ( n  = 12; 9%) followed by the Wellcome Trust ( n  = 10; 7%).

The upper right-hand map in Fig.  3 represents the countries in which the studies reported by the papers were carried out (multiple possible). While 41 countries are represented on this map as study sites, the sites are highly concentrated, with nearly half (47%) of reported study sites located in the following five countries: Uganda ( n  = 22; 13%), Kenya ( n  = 18; 11%) South Africa ( n  = 15; 9%), Brazil ( n  = 13; 8%) and India ( n  = 10; 6%).

The two lower maps of Fig.  3 represent the institutional affiliation of paper authors. The lower left-hand map presents the location of the first author affiliation. Across the papers, 148 first author affiliations were mentioned, with first authors on 10 papers providing dual-affiliations. The majority of first author affiliations were located in HICs ( n  = 94; 64%), most commonly in the United Kingdom ( n  = 27; 18%), the United States ( n  = 24; 16%) and the Netherlands ( n  = 16; 11%). The University of Maastricht, located in the Netherlands, was the single most represented institution. Three scholars affiliated with this university were first author on 14 papers (9%), and one of these authors was first author on 10 of these papers, and senior author on the other four. First author affiliations located in LMIC-based institutions were mentioned in 35% ( n  = 54) of studies, most commonly in Brazil ( n  = 11; 7%) and Uganda ( n  = 7; 5%).

The lower right-hand map illustrates the location of affiliated institutions for all other authors besides the first author. Across the papers, there were 438 mentions of affiliated institutions for all non-first authors. Compared to first author affiliations, these were more evenly divided between LMICs ( n  = 243; 53%) and HICs ( n  = 204; 47%).

Research context and approach

Figure  4 presents the wider research context reported. The majority ( n  = 98; 71%) of papers reported qualitative research to be embedded within implementation projects or trials. Twenty-five (18%) studies were reported as solely qualitative and not explicitly attached to a trial or intervention.

Reported study context

Interviews were the most reported research method, with 88% ( n  = 122) of papers reporting interviews as among the methods employed in studies. The second most common method was focus group discussions ( n  = 60; 43%). Fourteen percent ( n  = 20) of papers mentioned drawing from ethnographic methods, including in-depth ethnographic fieldwork ( n  = 12, 9%), focused ethnographic methods ( n  = 5, 4%), or using participant observation as a method ( n  = 3, 2%) (see Additional file 3 ). Of these, 10 (7%) were reported as a study embedded within an intervention or trial, eight (6%) were reported as part of an independent qualitative study, and in two (1%), the context was unspecified.

Scope of research (object of study)

Table 1 presents the health conditions and tests which were reported as the object of studies. HIV ( n  = 68; 49%) and malaria ( n  = 50; 36%) were the most commonly reported health conditions, with over 80% ( n  = 114) of papers reporting on one or both health conditions. Over half of studies ( n  = 40/68; 59%) examining POCTs for diagnosing HIV examined HIV rapid diagnostic tests (HIV RDTs), which were represented in 30% of all papers, while nearly all ( n  = 47/50; 94%) malaria-focused papers examined the use of malaria rapid diagnostic tests (mRDTs), represented in 35% of all papers overall. Papers reporting on malaria testing peaked in 2016, with 11 papers reporting on malaria published that year, decreasing to one and two papers in 2020 and 2021, respectively (no such paper published in 2022 was included up to the date of search). In contrast, papers reporting on HIV peaked in 2020 at 12, and remained high, with seven HIV-reporting papers in 2021–22, the highest reported condition over these years (see Additional files 4 and 5 ).

Syphilis testing was represented in 10% ( n  = 14) of papers, while 8% ( n  = 11) of papers reported on studies examining tuberculosis (TB) testing.

Among reported health conditions, many papers focused on testing in the context of antenatal care, including: seven out of 68 papers on HIV testing; eight out of the 50 papers on malaria testing; and five out of 14 papers on syphilis testing.

The most common test format considered were RDTs, reported in 71% ( n  = 98) of papers, followed by molecular tests, reported on in 10% ( n  = 14) of papers (see Additional file 6 ).

Figure  5 presents the moments across the POCT life cycle represented in the included papers. Footnote 1 Similar numbers of papers reported on policy, regulation, or funding ( n  = 16; 12%), manufacturing ( n  = 10; 7%) and procurement ( n  = 14; 10%). Twenty-eight (20%) papers report on supply chain management and seven (5%) on storage. Almost all ( n  = 126; 91%) papers concerned the moment of POCT use, e.g., taking and testing the sample, interpreting the results, and post-result decision-making and action. Nine (7%) studies considered input of information generated with POCTs into information systems, while only three considered waste management and disposal.

POCT life cycle moment represented

Primary health care facilities were the most represented settings, reported on in 60% ( n  = 83) of papers. Hospitals ( n  = 41; 30%) were the second most common setting, followed by community settings ( n  = 37; 27%), and domestic spaces ( n  = 20; 15%) (see Additional file 7 ). Among the papers which specified the setting as either a public/state setting or a private/commercial setting ( n  = 99, 72%), 78% ( n  = 77) reported on studies carrying out research in publicly funded health settings only, 9% ( n  = 9) in private/commercial settings only, while 13% ( n  = 13) reported on studies carried out in both public and private/commercial health settings (see Additional file 8 ).

While the body of papers took into account perspectives of actors across the POCT life cycle, the most densely represented perspectives were those of the formal health workforce, with 75% of papers taking these perspectives into account. The second most represented perspective was that of patients ( n  = 41; 30%), while 15% ( n  = 21) considered the perspective of patients’ family members. Fewer papers considered perspectives of policymakers, regulators, developers or designers, and specific end-user groups considered “at risk” or “vulnerable” (see Additional file 9 ).

The findings of this mapping indicate that qualitative social research related to POCTs for LMICs is highly concentrated and displays a striking lack of diversity and breadth, both in terms of how, where and by whom it has been produced, and the scope of research. Qualitative social research exploring POCTs for LMICs is often deployed to support quantitative scientific studies rather than contribute to the production of knowledge in the social sciences. While we did not search for mixed-methods studies, nearly half of included papers were reported as companions to a quantitative study—over double those reported as solely qualitative research. This is perhaps unsurprising since global health research is historically rooted in the traditions of clinical research, which privileges quantitative research and is underpinned by positivist epistemologies. Though important, positivist epistemologies are limited in their ability to produce knowledge related to the human condition, perceptions and experiences, or to reflexively interrogate underpinning value assumptions and cultural frameworks. Qualitative social research, which is underpinned by interpretive epistemologies, is especially well-equipped to contribute to these areas [ 6 , 7 , 33 ]. It is therefore important to consider how the appendage of qualitative studies to quantitative studies may shape, and potentially constrain, the knowledge they generate [ 33 , 34 , 35 , 36 ].

The context of the reported studies—including the funding sources, where research is done, by whom, and where research is published—is important for understanding the global health research ecosystem within which the purpose and scope of research is formulated, [ 37 ] A majority of papers reported on studies carried out within the context of a trial or intervention, suggesting that qualitative research has been brought in primarily to answer questions about implementation-related variables, e.g., feasibility and acceptability, and potentially omitting critical questions that social scientists might pose, such as those pertaining to the broader structural conditions in which POCTs are prioritised, funded, developed and deployed, or the ways in which POCTs reconfigure power relationships in medicine (see e.g., [ 38 , 39 , 40 , 41 , 42 ]). Ethnographic methods are especially well-suited to unearthing these social and political dimensions of global health technologies [ 9 , 43 , 44 , 45 ] and have been shown to be essential to better understand the lived experience and everyday workings of health systems and technologies in real-world settings (e.g., [ 2 , 10 , 11 , 12 ]). However, these methods were employed in only a small proportion of studies reported in these papers.

Our analysis reveals stark geographic disparities in the research ecosystem in terms of funding, author affiliation, and the location of study sites. Study sites were highly concentrated, with nearly half of reported study sites located in only five LMICs. As most studies were a companion to an intervention or trial, the narrowness of study locations is likely driven by funding priorities, and existing partnerships of HIC-based institutions. Not only is funding concentrated in a few HICs, with fully half of all funding credits to institutions based in the United States alone, it is also concentrated among a narrow group of institutions. The Bill and Melinda Gates Foundation emerged as the dominant funding institution, credited with providing funding for one in every five papers. Arguably, no other entity has been more instrumental in setting the terms in the transition from international to global health and driving technological solutions to global health [ 46 , 47 , 48 , 49 ]. Yet there is potential for important research topics and questions to be occluded when research funding on a technology is controlled by actors who are also its proponents and funders [ 50 , 51 ].

The geographical distribution of author institutions is also revealing. In recent years, numerous calls have been made to decolonise global health research and address the “epistemic injustice” of moral wrongs which occur in relation to knowledge production, use, and circulation, in global health [ 52 , 53 , 54 ]. One pathway towards epistemic justice involves attention to inclusive authorship [ 55 , 56 , 57 ]. First authorship is often considered a proxy for leadership of a paper [ 57 ], and our mapping highlights the striking density of first authorship affiliation in HIC-based institutions, with approximately two-thirds of first author affiliations based in HICs. For all other author institutions, the margin was much narrower between LMIC- and HIC-based institutions, with only slightly more author affiliations located in HICs. The close parity between HICs and LMICs in terms of non-first authorship might be seen as progress in authorial equity, although several studies have highlighted the risk that authors from LMICs get ‘stuck-in-the middle’ of the author list, or that their inclusion becomes symbolic ‘guest authorship’ instead of a genuine opportunity to make a conceptual and analytical contribution, as scientific authorship usually entails [ 52 , 54 , 58 , 59 , 60 , 61 ].

Our findings likely reflect inequities in both the geographic distribution of research funding and additional institutional infrastructures, resources, and support available to scholars in HICs when compared to scholars in LMICs. The authorship of this paper is a case in point and indicates the difficulty of addressing these inequities within current structures of employment and funding, even when researchers are aware of current debates around decolonising global health [ 62 , 63 , 64 ]. Broadening authorship can ensure that the questions posed and interpretation of results are relevant to global health practice in LMICs and enhance the accessibility of results to LMIC audiences.

At a structural level, these geographic disparities might also be viewed as a symptom of a persistent colonial legacy within global health [ 65 ]. Our findings therefore illustrate the continued importance of addressing equity in research expertise on global health technologies as part of broader agendas to decolonise global health. Building research capacity in LMICs to drive global health research is crucial to advancing epistemic justice and addressing global health challenges [ 66 , 67 , 68 , 69 ], and investing in LMIC capacity for interpretive and critical social science research in particular, with its commitment to the philosophical and social justice principles fundamental to decolonisation [ 70 ], may open promising pathways towards expanding epistemic justice.

If the conditions of knowledge production in this field are heavily circumscribed, our findings show that the scope of this body of research is equally narrow. The research we mapped is overwhelmingly skewed toward two health conditions: HIV and malaria. While this may be explained by these being some of the earliest introduced tests, this likely also reflects the extent to which qualitative social research has followed the funding priorities of HIC-based global health institutions, for which malaria and HIV have been priorities for several decades. It is notable that very few studies focused on non-communicable diseases, despite these increasingly contributing to disease burdens in LMICs [ 71 , 72 ], and many tests considered ‘essential’ by the WHO’s Essential Diagnostic List [ 24 ], such as those for TB, diabetes and syphilis in pregnancy, and hepatitis B infection during pregnancy, are under-represented or not represented at all in the included studies. Neglected tropical diseases (NTDs) were also under-represented, with only three papers reporting of use of POCTs for NTDs, with human African trypanosomiasis, leishmaniasis, and yaws considered in one paper each. This represents an important gap, with expanding access to POCTs for diagnosing NTDs a core component of the global road map to prevent, control, eliminate, or eradicate 20 NTDs by 2030 [ 73 ].

Papers overwhelmingly reported on the moment in which POCTs were used, leaving knowledge related to other lifecycle moments marginalised, such as how tests are developed, manufactured and regulated, and supplied, and issues around waste management in contexts in which waste management is known to be especially challenging [ 74 ]. The papers also reported primarily on POCT use in public health settings; a particularly glaring blind spot given that private health services are becoming dominant in health service delivery throughout LMICs [ 75 ]. It is critical to understand how the value of POCTs are transformed in health marketplaces and what this means for how they are used and how they affect follow-up action.

Although the number of qualitative research publications exploring POCTs in LMICs has increased year-on-year since 2007, fewer than 20 studies were published each year, suggesting that qualitative social research remains an underused resource in this area. However, the findings of this mapping also indicate striking densities of evidence and substantial blind spots in qualitative social research on global health technologies such as POCTs. In addition to increasing the quantity of qualitative research in this area, and LMIC capacity to drive this research, we therefore argue that it is equally important to increase the breadth of research, including across test type, geographies, settings and perspectives, in order to fully understand the social relations and dynamics involved in their development and deployment, and the implications for global health access and equity.

Indeed, we suggest that a potential link might be drawn between our finding that the conditions of knowledge production in qualitative social research on POCTs in LMICs are narrow, and the finding that the scope of that research is equally limited in breadth. The conditions of knowledge production created by the research ecosystem shape all phases of research, from conceptualisation, to carrying out the research, analysis and interpretation, to who ultimately has access to it. Reflecting on and addressing inequities, imbalances, and omissions in the conditions of knowledge production is therefore crucial for purposes of epistemic justice and scientific integrity.

Limitations

An important limitation of our study was our inability to adequately capture research generated in an intra- and post-COVID-19 context. COVID-19 was monumental in generating momentum for and normalising the decentralised use of POCTs, yet our search identified surprisingly few papers reporting on studies related to COVID-19 testing in LMICs. While COVID-19-related studies tended to be fast-tracked and prioritised, it seems that few entirely qualitative studies were published through these routes. We assume that this is at least in part due to the slower nature of producing qualitative evidence [ 76 , 77 ].

Another limitation of the study is that we did not search for studies published before 2000. It is possible that we missed some early work, as some POCTs were in circulation prior to this. However, we are confident that few studies would have been missed, given that the earliest study identified in our search was published in 2007.

A further limitation of this study remains that its authorship is based primarily in HIC contexts. Indeed, authors from HICs have posed the questions, determined the methods, and interpreted the results even as we critique the predominance of HIC institution density in the generation of research. It also reflects the interpretations and conclusions of social scientists, and the desire to see more research that draws from social science epistemologies—work that is currently more often carried out in HICs than LMICs.

This mapping exercise examined the conditions of qualitative knowledge production and global health research ecosystem related to one quintessential area of technology-driven global health practice—POCTs for use in LMICs. While numerous qualitative and social science researchers have responded to the call to generate knowledge related to the development, deployment, and use of diagnostics in LMICs, the overall body of research that has emerged from these efforts is highly concentrated in scope and overwhelmingly focuses on testing in the context of a narrow number of donor-supported vertical disease-control programmes. One potential factor in the limited breadth and the depth of research in this area, we argue, has been the predominant contextualisation of qualitative research within quantitative trial and intervention studies, driven largely by HICs through funding streams and expertise.

To optimise the potential contributions of qualitative research in global health, we suggest that successful research ecosystems would enable researchers to broaden their inquiries, in terms of their scope, underpinning epistemologies, and how studies are carried out. For POCTs in LMICs, this includes consideration of a wider range of health conditions, tests, settings and perspectives, particularly outside of trial contexts, driven by priorities and questions posed by LMIC actors, as well as a more expansive use of qualitative methods. This would require increased investment in social science capacity in LMICs, and, given the current structures of the global health political economy, a recognition by donors of the importance of building up such capacity and moving beyond a conceptualisation of qualitative social research as an adjunct to vertical programmes. A rich, diverse, and equitable research ecosystem is essential to move beyond siloed perspectives, foster critical perspectives on global health technologies and health systems strengthening, and formulate new understandings of and solutions to global inequities in access to health care.

Availability of data and materials

The datasets generated and analysed during the current study will be made available on the Edinburgh DataShare digital repository. The protocol for this study is registered with Prospero, ID number: CRD42022366518. It can be accessed at: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42022366518 . See also Additional file 10 for a summary of the papers included in this evidence mapping.

While this figure suggests a linearity of the POCT life cycle, we recognise the life cycle as not linear, but iterative, with particular moments informing other moments across the cycle (see also Engel, 2020).

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Acknowledgements

We would like to acknowledge Ruth McQuillan and Evropi Theodoratou for their contributions to the design and management aspects of this review.

This research was supported by the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (grant number 715450).

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JP conceptualised and developed the original draft of the manuscript as a first author under the guidance of AS, who provided direction and feedback to JP at every stage as a senior author. CC and AK provided conceptual input throughout the study design, data analysis and interpretation. EM contributed to the study design and supported project administration. MD provided expert guidance to JP in selecting the databases for the search and designing the search strategies, and ongoing support throughout the search processes. SN, EB, NA, EA, JR, and KK contributed to the screening and data extraction. AM, SN, EB, EM contributed to data analysis. KK extracted and analysed data from the seven Portuguese papers included in the study. JR extracted and analysed data from the Spanish paper included in the study. All authors reviewed and shared feedback on the manuscript and approved the final draft. JP and AS had access to all data and take full responsibility for its integrity and the accuracy of the analyses.

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Supplementary Information

Additional file 1..

Search Strategies.

Additional file 2.

Selection criteria.

Additional file 3.

Reported research methods.

Additional file 4.

Chronology of reported health conditions.

Additional file 5.

Chronology of HIV and malaria-reporting papers.

Additional file 6.

Reported test format.

Additional file 7.

Study setting.

Additional file 8.

Reported settings as public or private.

Additional file 9.

Reported perspectives.

Additional file 10.

Summary of included papers.

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• Published: 10 May 2024

Talking about climate change and health

Nature Climate Change volume  14 ,  page 409 ( 2024 ) Cite this article

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• Climate change
• Environmental social sciences
• Public health

The climate crisis is also an urgent and ongoing health crisis with diverse human impacts leading to physical, mental and cultural losses. Translating knowledge into action involves broad collaboration, which relies heavily on careful communication of a personal and politicized issue.

Against a backdrop of reported historical peaks in monthly temperatures, the past months have seen increasing visibility of the issue of climate change health, as several institutions have pushed awareness, research and action to limit the effects that warming has on human health. These include the inaugural Declaration on Climate and Health at COP28, the publication of the report Quantifying the Impact of Climate Change on Human Health 1 by the World Economic Forum, and a pledge of £23 million by the Wellcome Trust to support transdisciplinary research to protect human health from climate change.

In this issue of Nature Climate Change and an associated online Focus , we highlight research and other content at the climate–health intersection.

Across these works, a clear and familiar theme that arises is the world’s current lack of preparation to deal with the ongoing crisis. This is exemplified in an Analysis by Braithwaite and colleagues of the ability of healthcare systems to cope with climate change. In line with the World Economic Forum’s finding that climate impacts will cost healthcare systems a further US$1.1 trillion globally by 2050 (ref. 1 ), Braithwaite and colleagues highlight the need for multi-pronged plans to future-proof these at-risk systems. They also demonstrate the heavy bias of current research on acute disaster events and in the Global North.

The second conspicuous theme is that responding to the climate–health crisis will involve diverse actors. In a Viewpoint article, six researchers highlight key issues in their fields, which include mental health, labour, disease spread, maternal and neonatal health, air quality and nutrition, while advocating the need for collaboration across disciplines, sectors and geography. Echoing this need for collaboration, a Feature article by Yessenia Funes on the public drive to seek climate action through the courts focuses on the varied yet complementary roles the public, research scientists, healthcare professionals and lawyers have to play.

Thirdly, and critically linked to the previous points, is that improved communication is key for translating research into action. Part of this involves learning the languages of different fields or sectors: in a Q&A article, Maria Neira, director of the Department of Environment, Climate Change and Health at the World Health Organization (WHO), describes how understanding that the climate terms ‘adaptation’ and ‘mitigation’ corresponded to the terms ‘primary intervention’ and ‘secondary intervention’ in public health helped to align communication between the two fields. Another part also involves ensuring that language is used carefully to support positive action. Psychologist Elizabeth Marks (writing in the Viewpoint article) discusses the importance of identifying eco-anxiety without pathologizing it, while Neira discusses the impact of communicating a negative message (that is, climate change is harming human health) with or without actionable plans, underscoring the difference between problem solving and panic. Funes also highlights the important role of health practitioners, whose personal relationships with patients makes them ‘trusted messengers’ to discuss climate change health information. In line with this, the WHO has just released a new toolkit to support healthcare professionals to effectively communicate about climate change and health 2 . A Comment from Noa Heiman in this issue also discusses the best ways for therapists to support their clients who experience climate distress.

Overall, talking about climate change health is not just a question of slipping from the technical jargon of climate models to that of healthcare or legal systems. It is also about communicating with an increasingly engaged public on a deeply personal and politicized issue. Finding the right wording is therefore extremely important. But the personal part of health is also what makes discussing climate change from a health point of view such a powerful tool to move forward.

An ongoing global crisis lacking preparedness that requires multiple actors to move forward can leave a lot of room for debate. But as Neira suggests, if instead of talking only about reducing emissions or limiting the amount of degrees warming, we discuss the number of lives that can be saved, there is less room for discussion, and more room to translate words into action.

Quantifying the Impact of Climate Change on Human Health (World Economic Forum, 2024).

WHO launches new toolkit empowering health professionals to tackle climate change. WHO (22 March 2024); https://go.nature.com/3w1i7yO

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Published on 17.5.2024 in Vol 26 (2024)

Reporting of Ethical Considerations in Qualitative Research Utilizing Social Media Data on Public Health Care: Scoping Review

Authors of this article:

• Yujie Zhang 1, 2 * , MD   ; 
• Jiaqi Fu 1, 2 * , MD   ; 
• Jie Lai 1, 2 * , MD   ; 
• Shisi Deng 1, 2 , MD   ; 
• Zihan Guo 1, 2 , MD   ; 
• Chuhan Zhong 1, 2 , MD   ; 
• Jianyao Tang 1, 2 , MD   ; 
• Wenqiong Cao 1 , BSc   ; 
• Yanni Wu 1 , PhD  

1 Nanfang Hospital, Southern Medical University, Guangzhou, China

2 School of Nursing, Southern Medical University, Guangzhou, China

*these authors contributed equally

Corresponding Author:

Yanni Wu, PhD

Nanfang Hospital

Southern Medical University

No 1838 Guangzhou Avenue North

Baiyun District, Guangdong Province

Guangzhou, 510515

Phone: 86 02061641192

Email: [email protected]

Background: The internet community has become a significant source for researchers to conduct qualitative studies analyzing users’ views, attitudes, and experiences about public health. However, few studies have assessed the ethical issues in qualitative research using social media data.

Objective: This study aims to review the reportage of ethical considerations in qualitative research utilizing social media data on public health care.

Methods: We performed a scoping review of studies mining text from internet communities and published in peer-reviewed journals from 2010 to May 31, 2023. These studies, limited to the English language, were retrieved to evaluate the rates of reporting ethical approval, informed consent, and privacy issues. We searched 5 databases, that is, PubMed, Web of Science, CINAHL, Cochrane, and Embase. Gray literature was supplemented from Google Scholar and OpenGrey websites. Studies using qualitative methods mining text from the internet community focusing on health care topics were deemed eligible. Data extraction was performed using a standardized data extraction spreadsheet. Findings were reported using PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) guidelines.

Results: After 4674 titles, abstracts, and full texts were screened, 108 studies on mining text from the internet community were included. Nearly half of the studies were published in the United States, with more studies from 2019 to 2022. Only 59.3% (64/108) of the studies sought ethical approval, 45.3% (49/108) mentioned informed consent, and only 12.9% (14/108) of the studies explicitly obtained informed consent. Approximately 86% (12/14) of the studies that reported informed consent obtained digital informed consent from participants/administrators, while 14% (2/14) did not describe the method used to obtain informed consent. Notably, 70.3% (76/108) of the studies contained users’ written content or posts: 68% (52/76) contained verbatim quotes, while 32% (24/76) paraphrased the quotes to prevent traceability. However, 16% (4/24) of the studies that paraphrased the quotes did not report the paraphrasing methods. Moreover, 18.5% (20/108) of the studies used aggregated data analysis to protect users’ privacy. Furthermore, the rates of reporting ethical approval were different between different countries ( P =.02) and between papers that contained users’ written content (both direct and paraphrased quotes) and papers that did not contain users’ written content ( P <.001).

Conclusions: Our scoping review demonstrates that the reporting of ethical considerations is widely neglected in qualitative research studies using social media data; such studies should be more cautious in citing user quotes to maintain user privacy. Further, our review reveals the need for detailed information on the precautions of obtaining informed consent and paraphrasing to reduce the potential bias. A national consensus of ethical considerations such as ethical approval, informed consent, and privacy issues is needed for qualitative research of health care using social media data of internet communities.

Introduction

Social media are web-based computer-mediated tools to collaborate, share, or exchange information, ideas, pictures, or videos in virtual communities and networks such as message boards, communities, chat rooms, forums, Twitter, and Facebook [ 1 ]. Moreover, patients and researchers can use internet communities to provide health care and disseminate health information [ 2 , 3 ]. Health care refers to the efforts made to improve or maintain physical, mental, or emotional well-being, including prevention, diagnosis, treatment, recovery, and other physical and mental impairments [ 4 ]. Currently, with 57% of the global population’s access to social media, more than 40% of the patients and caregivers worldwide utilize the internet community for health care information needs [ 5 ]. With diverse populations accessing internet communities and sharing information about health care topics, researchers have the opportunity to collect and analyze text about health care from a diverse range of participants in the internet community, which was unavailable previously [ 6 ]. Usually, quantitative data are derived from information extraction, which can be analyzed statistically, and the summary results presented cannot be directly linked to individual participants. In contrast, qualitative research within internet community analysis posts and comments qualitatively or thematically involves a more detailed and in-depth analysis and understanding of the full written content [ 7 ]. However, a controversial ethical problem has been raised about conducting qualitative research containing internet users’ verbatim quotes that could lead to traceability of the original post, thereby causing a threat to an individual’s privacy [ 8 ]. Additionally, a previous study investigated public and patients’ views regarding ethics in research using social media data and reported that internet users were aggrieved if they found any of their quotes cited in a medical research paper without obtaining their informed consent [ 9 ]. Further, besides the privacy breach caused by posts being traced, there is greater harm for special groups or vulnerable groups if we do not highlight the importance of the technical standards for text mining and privacy protection in health care. For instance, some unusual postings, abnormal pictures, and interactions that were expressed by individuals with mental disorders in social media can be detected by researchers by using text mining tools without obtaining their consent [ 10 ]. The publication of research on mental disorders, including quotes in posts, can result in a high risk of information harm, which can lead to personal information being revealed and further stigmatization of the condition or disease [ 11 ]. Since 2001, ethical concerns have been debated for decades about ethical approval, informed consent, and how to ensure anonymity and preserve data privacy and confidentiality in qualitative research in the internet community [ 12 - 14 ].

With the rapid development of social media and internet research, some ethical guidelines or standards have been published to ensure that research based on internet communities is conducted ethically. The Association of Internet Researchers (internet research ethical guidelines 2.0 and 3.0) showed that researchers working without the direct approval of ethics review boards would have additional challenges to face, and obtaining informed consent is obviously impracticable in several big data projects. However, with the ethical issues about privacy breaches and harms of risk of discrimination, the Association of Internet Researchers recommended reserving the acquisition of informed consent to the dissemination stage by asking for informed consent from specific participants before publication of their quotes [ 15 , 16 ]. Furthermore, researchers should take responsibility for information confidentiality and anonymity according to the internet research ethics criteria prepared by the National Committee for Research Ethics in the Social Sciences and the Humanities guidelines, which recommend a basic research ethic norm for the analyses, reports, and evaluations that apply to all research [ 17 ]. Moreover, the National Committee for Research Ethics in the Social Sciences and the Humanities guidelines contain more details about the demand for legal consent and privacy standards imposed by the European Union’s General Data Protection Regulation. The General Data Protection Regulation is a European Union–wide regulation targeting the project of personal data processing. The General Data Protection Regulation defines personal data as any information relating to an identifiable person (data subject), including name, online identification number, location data, and other factors related to personal, physical, physiological, mental, or social identity [ 18 ]. The General Data Protection Regulation recommends using anonymous data and deleting identifiable information to ensure the confidentiality of the data. Consent should be obtained from the individual for use in scientific research [ 18 , 19 ]. The British Psychological Society guideline does not explicitly refer to the internet community but suggests that researchers may consider paraphrasing the verbatim quotes to reduce the risk of being traced or identified in qualitative research [ 20 ]. When paraphrasing, steps must be put into place to ensure that the original meaning of the message is maintained. Currently, there is no widespread consensus on ethical considerations by social media researchers.

Some researchers have tried to explore the reporting of existing ethical considerations in research papers using social media data. For instance, Sinnenberg et al [ 6 ] reported that only 32% and 12% of the papers mentioned acquiring ethical approval and informed consent, respectively, by utilizing multiple analysis methods, including surveillance, intervention, recruitment, engagement, content analysis, and network analysis with Twitter data before 2015. Thereafter, Takats et al [ 21 ] conducted an updated examination based on Sinnenberg et al’s [ 6 ] study. They found that of 367 studies using different methodological approaches, including sentiment mining, surveillance, and thematic exploration of public health research using Twitter data between 2010 to 2019, 17% of the studies included verbatim tweets and identifiable information about the internet users [ 21 ]. Similarly, Lathan et al [ 22 ] reviewed papers, including both qualitative and quantitative methods, by using Facebook data to explore public health issues and reported that only 48% and 10% of the papers obtained ethical approval and informed consent, respectively. Furthermore, in a study on research using YouTube data or comments, Tanner et al [ 23 ] found that only 26.1% of these studies sought ethical approval, only 1 paper (0.08%) sought informed consent, and 27.7% contained identifiable information. These findings indicate widespread neglect of ethical issues such as ethical approval, informed consent, and privacy issues in research papers using social media data.

Our study focuses on the ethical challenges of qualitative studies utilizing social media data. First, social media can be considered as sources for qualitative data collection because of the low cost, vast amount of available sources about health information, and users’ health behaviors, experiences, and attitudes. Second, qualitative research is context-dependent and mainly contains quotations and written content to support the viewpoint. It is acknowledged that quote materials from social media would potentially be traced back to the original posts and threaten the users’ privacy [ 24 ]. This is supported by findings reported by Ayers et al [ 25 ] who found that online searches of verbatim Twitter quotes in journal papers described as “content analyses” or “coded Twitter postings” can be traced back to individual internet users 84% of the time. Furthermore, Lathan et al [ 22 ] identified that 46% of the studies with verbatim or paraphrased quotes could be traced to the original posts in 10 minutes. Therefore, it is essential to investigate the extent to which ethical oversight is reported in qualitative studies using social media data. Moreover, qualitative research often involves personally sensitive data about health conditions and diseases; hence, anonymity and proper deidentification would be more important for researchers [ 26 , 27 ].

Previous studies have reviewed the ethical challenges and methodological use of social media platforms such as Twitter [ 6 , 21 ], Facebook [ 22 ], and YouTube [ 23 ] for health care research in both qualitative and quantitative studies. Although there is plenty of qualitative data pouring into social media such as blogs, Twitter, Facebook, and Weibo, evidence is lacking on the investigation of ethical considerations targeting qualitative data in different software and web-based discussion forums to provide a more comprehensive understanding of the ethical issues. To address the ethical considerations in qualitative research of different internet communities and draw the attention of researchers and publishers to ethical issues, we conducted this study to evaluate the ethical practices and ethical considerations of qualitative studies on health care by using data of internet communities. This review aims to (1) assess the rates of reporting institutional review board (IRB) approval and informed consent in studies focused on mining text in the internet community and social media, (2) compare these rates according to the year of publication, country conducting the research, website included in the study’s analysis, and journal’s guidelines about ethical approval for the type of study, and (3) describe whether the studies used anonymized/deidentified data.

Research Design

We conducted a scoping review to investigate how qualitative research mining social media data handles ethical approval, informed consent, and confidential issues. We performed this study according to the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) guidelines. The completed PRISMA-ScR checklist is provided in Multimedia Appendix 1 .

Search Strategy

All published qualitative studies from 2010 to March 31, 2023, focusing on mining text from online community and social media sources about health care in the following databases were included in this study: PubMed, Web of Science, CINAHL, Cochrane, and Embase. A standardized search string containing Medical Subject Headings (MeSH) and non-MeSH entry terms was used in the search strategy. In addition, the reference lists of the retrieved papers and citation tracking were manually searched as a supplement to database searches to improve comprehensiveness. Gray literature was also identified through internet searches in Google Scholar and OpenGrey websites. The search strategies are represented in Multimedia Appendix 2 .

Inclusion and Exclusion Criteria

We divided the criteria into 2 parts. First, we limited the inclusion and exclusion criteria used at the title and abstract screening stage eligible for (1) studies mining existing text and posts from the internet community and social media data focusing on health care topics, (2) studies using qualitative methods or available qualitative parts in mixed methods studies to analyze data, and (3) studies only written in English. Ineligible studies were those related to investigating the use and dissemination of social media in health care, using social media or internet community as an intervention tool, and using social media to conduct web-based interviews, surveys, or focus groups. We also excluded studies published as reviews, case studies, conference abstracts, commentaries, policies, guidelines, and recommendations. Second, at the full screening stage, the specific eligible inclusion criteria were studies focused on mining text about health care topics with full-text papers. Studies that did not have the full text after contacting the authors and that were not originally in the English language were excluded.

Study Selection

All results of the searches were entered into the EndNote library, and duplicates were removed. Two researchers reviewed the titles and abstracts based on the inclusion and exclusion criteria independently. Those studies that were irrelevant to the study topic were discarded, and then the full text was screened to select eligible papers. Any disagreements were discussed and resolved by consensus or a third person.

Data Extraction

Data were extracted between April 2023 and May 2023. Two researchers independently read the full text carefully, and the results were extracted using a standardized data extraction spreadsheet, including research type, first author, study objective, sample size, publication time, country where the research was conducted or country of the first author, website or internet community the studies focus on, type of data collected from social media, language of collected posts or data, privacy level of data (public or privacy posts), study design, research results, published journal, and information about the ethical considerations. Disagreements were resolved by consensus of a third person. The information about ethical considerations was analyzed to investigate the rates of reporting ethical approval, informed consent, and privacy issues: whether IRB review was reported (IRB approval, IRB exemption, unnecessary, not mentioned) and the reason for not requiring IRB approval; whether informed consent was obtained from participants or the websites’ administrators, consent types (digitally informed consent or written informed consent, informed consent is not required, consent was waived by IRB), and the methods used to obtain consent in each study; and whether quoting a post in papers could lead to the identification of internet users in each study. The description of users’ posts (verbatim quote, paraphrase) was recorded. We also analyzed if posts were paraphrased to maintain the original meaning, if actions were taken to deidentify the internet users, and if the posts contained other identifying information (ie, usernames, photos, links, hashtags) attached to the post. As every journal would provide publication ethical considerations and requirements, we also searched the submission guidelines and editorial policies of each journal submission website to check whether the journal contained any ethical guidance targeting studies using data from internet community and social media platforms. Additional information was included about the details of ethical approval, informed consent, and privacy, for example, whether individuals can withdraw their quotes if they want to be excluded from the study at any time without any reprisal and whether the quotations were tested for deidentification via search engines. There was excellent agreement on the primary outcome between the 2 researchers (k>.95 for all).

Data Analysis

Data were analyzed using SPSS software (IBM Corp). The chi-square test or Fisher exact tests (when cell size was less than 5) were used to test for differences between the rates of informed consent and ethical approval according to publication year, website, and different countries. All P values were 2-sided, and P values <.05 indicated significance.

Study Selection for the Review

We reviewed 4674 papers after removing the duplicates. After screening the titles, abstracts, and full-texts, we reviewed 108 eligible papers ( Figure 1 ). The full list of the included papers and all the extracted information are incorporated in Multimedia Appendix 3 [ 28 - 135 ]. Of the 108 studies reviewed, 73 (67.6%) were qualitative studies and 35 (32.4%) were mixed methods studies. All papers had text mined from internet communities or social media for qualitative analysis. The sample size ranged from 32 to 392,962. Approximately 82.4% (89/108) of the studies were published after 2018, and there was a sharp increase in the number of studies from 2019 to 2022. Moreover, nearly half of the studies (55/108, 50.9%) were published in the United States. Regarding the websites for mining text, the most widely used social media platform was Twitter (42/108, 38.9%), followed by Facebook (17/108, 15.7%).

Ethics Approval in These Studies

Our results indicated that of the 108 studies, 78 (72.2%) reported ethics approval. Of the 78 studies, 31 (40%) explicitly stated that ethics approval was obtained before the study was undertaken, 33 (42%) reported that the ethics approval was granted through exemptions by the local IRB, and 14 (18%) explicitly demonstrated that approval by the ethics committee was not required because publicly available data were collected from internet communities and social media platforms. However, 30 (27.8%) of the 108 studies did not mention about obtaining IRB approval ( Table 1 ).

Based on our exploration of the ethical guidelines of each journal to determine whether there were ethical requirements for studies mining social media data, only 36.1% (39/108) of the studies were published in journals that required ethical considerations for studies gathering data from social media platforms by using internet and digital technologies. Of the 39 studies published in 19 journals, 27 (69%) were published in the Journal of Medical Internet Research and its sister journals. The submission guidelines of the Journal of Medical Internet Research state that authors of manuscripts describing studies of internet, digital tools, and technologies are required to verify that they have adhered to local, national, regional, and international laws and regulations, and are required to verify that they complied with informed consent guidelines. Moreover, 2 journals also provided a specific requirement, that is, when researchers interact with individuals or obtain privacy information gathered from social media platforms, they should obtain ethics approval prior to conducting the study and informed consent from anyone who could potentially be identified. Surprisingly, there were no significant differences in the ethics approval reportage between journals with ethics approval guidelines and those that did not have ethics guidelines for researchers gathering data from social media platforms ( P =.08). Notably, the rates of reporting ethics approval were different between different countries ( P =.02). However, there were no statistically significant differences between the rates of reporting ethical approval and different websites or publication years (all P >.05) ( Table 2 ).

Informed Consent

Of the 108 studies, 59 (54.7%) showed that they did not include any information about informed consent and 49 (45.3%) mentioned informed consent. Of the 49 studies that mentioned informed consent, 14 (13%) demonstrated that informed consent was waived by local institutional boards, and 21 (19%) reported that informed consent was not required because this information is publicly available in websites or did not involve human participants. We interpreted this as not seeking informed consent. Only 14 (12.9%) of the 108 studies explicitly indicated that informed consent was obtained ( Table 1 ). Among the 14 studies, 2 (14%) only provided a generic statement that informed consent was obtained but did not report the process of how the informed consent was obtained, while 12 (86%) received digital informed consent. Of the 12 studies that reported receiving digital informed consent, 6 reported that they sought permission from the communities’ or groups’ administrators and by posting a statement of the research objective on the group’s wall, while 5 studies contacted the participants privately via email, commenting below the posts and software to gain consent, and 1 study reported that it had sent a digital version of the informed consent book. Furthermore, among the studies that had obtained informed consent, 7 studies included the statement that the individuals’ posts would be removed if they wanted to be excluded from the study, and they could withdraw from the study whenever they wanted. In addition, the rates of reporting informed consent showed no statistical significance between publication years, different countries, and different websites (all P >.05) ( Table 2 ).

Confidentiality of the Information

All data sources were obtained from anonymous websites or communities, and the majority (104/108, 96.3%) of the data sources did not contain usernames. Notably, only 3.7% (4/108) of the studies contained the participants’ usernames or pseudonyms. One study reported that pseudonyms like Sasha had been used instead of the real name. The other 3 studies contained the expression for usernames but did not state whether pseudonyms were used. Except for 9 studies that used nonnative language quotes and 3 studies that were transcribed into text via video, among the 108 included studies, 76 (70.3%) quoted at least one native language post in their reports. Additionally, 20 studies presenting aggregated analysis or composite accounts did not include any quotation or written content. Of the 76 studies containing internet users’ written content, 52 (68%) contained just verbatim-quoted participants’ posts and 24 (32%) contained paraphrased posts ( Table 1 ). Among the 52 studies containing direct and verbatim quotations, which are likely to be traced to the original posts from users, only 17 (33%) studies took measures to deidentify the users. The 17 studies mentioned that all names or usernames were removed and personal identifying information was removed to maintain privacy, while 42% (22/52) of the studies did not mention any measures that were taken to deidentify the users and maintain confidentiality. Approximately 32% (24/76) of the studies described that they paraphrased posts and removed any explicitly identified personal information to maintain confidentiality to reduce the likelihood of users being identified via search engines. Of the 24 studies, 20 (83%) reported that the quotations were slightly modified or summarized for readability, the symbol information was removed using “…”, and key identifiable information was removed to protect privacy while maintaining the meaning of posts. Four of the 24 (17%) studies did not report the methods and details of paraphrasing. Notably, only 3% (2/76) of the studies containing users’ written content showed that researchers intentionally entered each quote into search engines to ensure that every quote did not lead to the original posts. Moreover, of the 76 studies containing written content, 62 (82%) did not contain other types of identity information attached to the posts, while 14 (18%) included other identifying data (hashtags, emojis, geolocation, photos, links, screenshots) attached to the original posts for analysis ( Table 1 ). Of the 14 studies including other identifying information, 4 (29%) contained photos and screenshots associated with the website pages. Of the 52 studies that disclosed verbatim quotes and other identifiable information, 26 (46%) studies reported informed consent consideration, and only 8 (15%) obtained explicitly informed consent. Additionally, of the 77% (40/52) of the studies that mentioned IRB or ethical review, 38% (15/40) received IRB approval, and 63% (25/40) of the studies were granted exemption. The proportion of reporting ethical approval in studies containing users’ written content was modestly higher than that in studies not containing users’ written content (60/76, 79% vs 14/32, 44%; P <.001) ( Table 2 ).

Principal Findings and Comparison to Prior Work

In this scoping review, we included 108 studies ( Multimedia Appendix 3 ; [ 28 - 135 ]) that focused on mining text from internet community and social media data for health care research, and we reviewed the ethical consideration reportage and outcome reports in these studies. We found that the rates of reporting IRB approval and informed consent in qualitative research on health care utilizing social media data were 59.3% (64/108) and 12.9% (14/108), respectively. Our findings demonstrate that the key ethical considerations for qualitative research in online communities are insufficiently discussed and described. However, the reporting rates of ethical considerations in the papers in our scoping review were much higher than those reported in systematic reviews including multiple analysis methodologies on only 1 social media platform. For example, ethics approval and informed consent were reported in 48% and 10% of research studies using only Facebook data [ 22 ], 32% and 0% from 2006 to 2019 [ 21 ], 40% and 0.9% (only 1 paper) from 2015 to 2016 in public health research using only Twitter data [ 25 ], and 26.1% and 0.8% (only 1 paper) in researches incorporating only YouTube data [ 23 ], respectively. In fact, previous studies were limited to only a few selected websites such as Twitter, Facebook, and YouTube. There is a lack of research that incorporates a variety of different social media data for comparisons. Differences in the reporting of ethical considerations may be attributed to the different methodologies adopted by studies. For example, Lathan et al [ 22 ] analyzed the ethical considerations in studies including predictive or model development, while our research focuses on the ethical considerations in qualitative studies.

Importantly, our findings indicate that there is a need to develop a standardized and apparent approach for the reporting of ethical considerations in qualitative research of data from social media and online communities. Our research demonstrates that the rates of reporting ethics approval are different in different countries ( P =.02). Specifically, a wide variety of national research ethics governing bodies and over 1000 laws, regulations, and standards provide oversight for human subjects research in 130 countries. Obviously, a guideline is needed for best ethical practices for qualitative research involving posts from social media platforms. Surprisingly, there were no significant differences between the rates of reporting ethical approval and those of journals specifying ethical requirements for studies involving text mining ( P =.08). This inconsistent result of publication guidelines and reports of ethical approval consent is similar to previous findings on the ethical standards in COVID-19 human studies [ 136 ]. Although there are journal publication guidelines for studies mining social media data, the reports of ethical approval and consent in the papers published in such journals do not exactly follow the guidelines. Consequently, this finding indicates that more ethical awareness is needed among researchers, editors, and reviewers for qualitative studies on data mining.

Besides the different legal and regulations in different countries, the inconsistency in the ethics approval in published papers may be because social media research is a highly interdisciplinary science, and computer science researchers may be less experienced or may pay less attention to the key ethical issues of protecting human subjects [ 137 ]. Medical and health science researchers may have considered some ethical concerns about gathering social media data but they may not be familiar with the relevant guidelines. For example, the Association of Internet Researchers has a detailed ethical guideline targeting social scientists conducting digital research, while it may be less popular and less well-known among medical and health care researchers. At the institute level, Ferretti et al [ 138 ] noticed that institutionalized review committees, especially the individual IRB institutes for universities and health care systems lack knowledge about the methodology, text mining technical standards, data security, and ethical harms for studies using big data and social media as sources. Because of this lack of knowledge, institutional ethics committees may have inconsistent ethical criteria and perspectives about web-based projects using social media data [ 139 ]. Therefore, some ethics review committees exclude research on internet communities from ethical oversights because their ethics standards are confined only to medical fields. Above all, it is additionally challenging for ethical approval institutions because of the continuous development and dynamic change of studies using social media data. Furthermore, it is necessary for ethics committee members to be trained about the ethical issues in studies mining text from social media. Inviting interdisciplinary researchers to join in the approval process would be an appropriate method to increase the awareness of ethical considerations [ 140 , 141 ].

Interestingly, the reporting rate of obtaining informed consent for mining social media data in qualitative studies was unexpected. The most influential ethical reports such as the Nuremberg Code [ 142 ], Declaration of Helsinki [ 143 ], and the Belmont Report [ 144 ] have demonstrated the principle of informed consent in research involving humans. Our review shows that only 12.9% (14/108) of the studies explicitly obtained informed consent and 32.4% (35/108) of the studies reported that informed consent was exempted by IRB or was not required, as the information was available publicly in websites or did not involve human participants. Our results are similar to those of Wongkoblap et al [ 145 ] who reported that only 16.7% of the studies received informed consent from participants prior to data analysis on data mining of social network data on mental health disorders.

There are multiple reasons for the challenges in obtaining informed consent in an internet setting. First, it is impractical for researchers to gain individual informed consent from a large number of users in an internet community [ 146 ]. Second, members of ethics review boards lack consensus about the need for informed consent from an internet community for qualitative research under the current legal definition [ 147 ]. Moreover, there has been a debate on the criteria of human subject research in using social media data. The federal regulation recommends that if data in the studies are obtained from public social media websites, where data are identifiable and do not require interaction with individuals, such studies do not constitute human subject research, while studies involving the identification of private information or interaction with the individual can be considered as human subject research [ 148 ]. In contrast, some researchers believe that social media and big data research are not ethically exceptional and should be treated in the same manner and with the same rules as those for traditional forms of research [ 149 ]. There is ambiguity as to what is appropriate or should be standard practice for obtaining informed consent.

Currently, it is challenging to maintain privacy and protect the traceability of individuals posting content in the internet community. Our findings indicated that 70.3% (76/108) of the studies contained internet users’ written content, of which 68% (52/76) included verbatim quotations of users’ posts that could lead to identification, and 18% (14/76) of the studies included other identifiable information such as links, screenshots, and emojis linked to original posts, which are similar to the findings of Ayers et al [ 25 ] and Lathan et al [ 22 ]. Usha Lawrance et al [ 150 ] and Wilkinson and Thelwall [ 151 ] argued that using direct quotes to support findings would lead to the identification of users and breach users’ confidentiality in internet community data. Moreover, quoting social media posts or disclosing usernames violate the International Committee of Medical Journal Editors’ ethics standards, which state that identifying information such as written descriptions and photos should not be published unless the information is essential for scientific purposes and the participants give written informed consent for publication [ 152 ]. Furthermore, our study demonstrates that the proportion of studies containing users’ written content (both direct and paraphrased quotations) is higher than that of studies that do not include any quotation or written content (60/76, 79% vs 14/32, 44%; P <.001)——a tentative explanation is that some researchers realized that ethical reportage should be stricter for qualitative papers with quotations from social media posts due to privacy and security issues. This is supported by Boyd and Crawford [ 153 ] who stated that rigorous thinking about the process of mining and anonymizing big data is required for ethics boards to ensure that people are protected. Our findings show that 32% (24/76) of the studies intentionally paraphrased the quotes to ensure that users could not locate them, and 20 studies used aggregated data interconnected with anonymity. Moreover, it is recommended by Wilkinson and Thelwall [ 151 ], Bond et al [ 154 ], and Markham et al [ 155 ] that researchers should not directly quote and work with aggregate data sets and separate texts from their original context, which is more acceptable to participants. In addition, the British Psychological Society guidelines recommend that researchers consider paraphrasing any verbatim quotes to reduce the risk of these being traced to the source [ 20 ]. Notably, 13 of the 25 papers in this study showed that they did not report the precautions taken for paraphrasing. This may be due to the lack of detailed methodology and consensus about paraphrasing quotes to reduce bias and maintaining the original meaning.

Limitations and Strengths

Our scoping review has several limitations. First, our research was limited to qualitative studies and the qualitative parts in mixed methods studies on text mining from social media, and it is unclear whether ethical considerations are critical in quantitative studies among internet communities. Second, we were restricted to studies published in English language and those with the full text available, and therefore, we could be underestimating the number of relevant papers published in other languages. Third, the rates of reporting ethical approval, informed consent, and privacy of this research relied on self-reported data. Thus, it is possible that although certain studies did not report the process of ethical considerations, such considerations may have been followed during the research. Conversely, some studies may have mentioned about the ethical considerations but may not have conducted them in practice. Hence, there is a bias because of the lack of accurate documentation that must be considered.

Social media text mining can be a useful tool for researchers to understand patient experiences of health conditions and health care. However, as illustrated by the absence of ethical discourse in publications, our analysis indicates significant gaps in the ethical considerations and governance of qualitative research of internet posts. Therefore, a complete and consistent consensus guideline of ethical considerations in qualitative research of internet posts is needed to protect users’ data. With the continued advancing development of text-mining techniques, qualitative studies mining text from social media should be more cautious while using user quotations to maintain user privacy and protect the traceability of the internet users posting content. We suggest that authors should report their results by using aggregated findings or deidentified ways like paraphrasing instead of verbatim quotations, which can prevent internet users from being identified through search engines. In addition, authors should provide more detailed information about the precautions taken for obtaining informed consent and paraphrasing to reduce the potential bias. Furthermore, journals and editors should pay more attention to the reporting standards of ethical consideration and privacy issues in qualitative research involving social media data.

Acknowledgments

This project was funded by the National Natural Science Foundation of China (72304131) and the Outstanding Youths Development Scheme of Nanfang Hospital, Southern Medical University (2023J005). The funders had no role in the study design, data collection and analysis, decision to publish, or preparation of this manuscript. We sincerely thank the funders of this study.

Data Availability

All data extracted and analyzed during this study are presented in this paper and in the multimedia appendices.

Authors' Contributions

YW was responsible for the protocol of the research and redrafted the paper critically. YZ and JF performed literature searches. YZ, JL, and WC performed study identification and screening. ZG, SD, CZ, and JT extracted and analyzed the data from the included journals. YZ and JL wrote the first draft of the paper. All authors read and approved the final manuscript.

Conflicts of Interest

None declared.

PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) checklist.

Search strategy for each database.

Summary of included literature.

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Abbreviations

Edited by T Leung, T de Azevedo Cardoso; submitted 02.08.23; peer-reviewed by E Zibrowski, J Scheibner; comments to author 06.10.23; revised version received 29.11.23; accepted 16.04.24; published 17.05.24.

©Yujie Zhang, Jiaqi Fu, Jie Lai, Shisi Deng, Zihan Guo, Chuhan Zhong, Jianyao Tang, Wenqiong Cao, Yanni Wu. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 17.05.2024.

This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.

Managing Low Back Pain in Rural Uganda: A Qualitative Study Exploring the Perspectives and Practices of Frontline Health Workers regarding LBP Management in Primary Care

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BACKGROUND AND AIMS Low-back pain (LBP) is the main cause of years lived with disabilities (YLDs) worldwide and the second cause of YLDs in Uganda. In 2019, it was responsible for 7.4% of global YLDs and 5% of YLDs in Uganda. LBP takes a significant toll on people’s quality of life and disproportionately affects lower socioeconomic classes, elders, and women. In rural Uganda, LBP is managed in health centres by clinical officers and nurses with limited resources. This study aims to understand the perspectives and practices of these health workers.

Method A qualitative design using semi-structured focus-group discussions was employed. Purposive sampling allowed us to identify relevant participants based on their roles as healthcare professionals working in primary care context in rural South-West Uganda. Data was analysed using thematic analysis.

Findings LBP is a common and persistent complaint among patients presenting to rural health centres in Uganda. Manual labour and female specific health conditions were deemed to be common causes. There was a strong reliance on medication prescription, coupled with X-ray diagnosis, with little emphasis on education or exercise. Finally, findings highlighted major barriers for patients within the referral system to hospital care or rehabilitation.

Discussion Education and training of frontline clinicians in terms of appropriate prescribing and rehabilitation for LBP is crucial. Evidence-based rehabilitation interventions need to be developed and adapted so that they can be delivered within the time and resource constraints of the health workforce, ensuring that they are acceptable and effective to patients in the context of rural Uganda.

Competing Interest Statement

The authors have declared no competing interest.

Funding Statement

Author declarations.

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

This study received ethical approval from the Mbarara University of Science and Technology Research Ethics Committee (MUST-2022-540) and from the Human Research Ethics Committee at University College Dublin (LS-LR-22-227-OSullivan).

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

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Quantitative Methods in Global Health Research

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• Jamalludin Ab Rahman 5  

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Quantitative research is the foundation for evidence-based global health practice and interventions. Preparing health research starts with a clear research question to initiate the study, careful planning using sound methodology as well as the development and management of the capacity and resources to complete the whole research cycle. Good planning will also ensure valid research outcomes. Quantitative research emphasizes a clear target population, proper sampling techniques, adequate sample size, detailed planning for data collection, and proper statistical analysis. This chapter provides an overview of quantitative research methods, explains relevant study designs, and presents considerations on all aspect of the research cycle along four phases: initiation, planning, data collection, and reporting phase.

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Kulliyyah of Medicine, International Islamic University Malaysia, Kuantan, Pahang, Malaysia

Jamalludin Ab Rahman

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Global Health Programme, Graduate Institute of International and, Geneva, Switzerland

Ilona Kickbusch

Charite-Univ.-Med. Berlin, Berlin, Berlin, Germany

Detlev Ganten

Africa, Brazzaville, Rep of the Congo, World Health Organization Regional Offic, Brazzaville, Congo, Demographic Republic (Zaire)

Matshidiso Moeti

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Ab Rahman, J. (2021). Quantitative Methods in Global Health Research. In: Haring, R., Kickbusch, I., Ganten, D., Moeti, M. (eds) Handbook of Global Health. Springer, Cham. https://doi.org/10.1007/978-3-030-05325-3_9-1

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DOI : https://doi.org/10.1007/978-3-030-05325-3_9-1

Received : 24 August 2020

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Published : 24 November 2020

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