Equitable Research Partnerships Research Articles

Genetic research within Indigenous communities: Engagement opportunities and pathways forward

PurposeAgainst a historical backdrop of researchers who violated trust through lack of benefit sharing, transparency, and engagement, efforts are underway to develop better approaches for genetic and genomic research with Indigenous communities. To increase engagement, there is a need to understand factors that affect researcher and community collaborations. This study aimed to understand the barriers, challenges, and facilitators of Indigenous Peoples in the United States participating in genetic research. MethodsWe conducted 42 semistructured interviews with Tribal leaders, clinicians, researchers, policy makers, and Tribal research review board members across the United States to explore perceived risks, benefits, barriers, and facilitators of genetic research participation. ResultsParticipants, identifying as Indigenous (88%) or non-Indigenous allies (12%), described their concerns, hesitancy, and fears about genetic research, as well as the roles of trust, transparency, and respect for culture in facilitating partnerships. Previous harms—such as sample and data misuse, stigmatization, or misrepresentation by researchers—revealed strategies for building trust to create more equitable and reciprocal research partnerships. ConclusionParticipants in this study offered strategies for increasing genetic research engagement. The pathway forward should foster transparent research policies and practices to facilitate informed research that supports the needs and priorities of participants, communities, and researchers.

Impact with equity: EDCTP and equitable research partnerships

Impact with equity: EDCTP and equitable research partnerships

Enabling equitable and ethical research partnerships in crisis situations: Lessons learned from post-disaster heritage protection interventions following Nepal’s 2015 earthquake

Enabling equitable and ethical research partnerships in crisis situations: Lessons learned from post-disaster heritage protection interventions following Nepal’s 2015 earthquake

Create to Collaborate: using creative activity and participatory performance in online workshops to build collaborative research relationships

BackgroundCreative methods/practices have been highlighted as helpful to develop more collaborative, equitable research partnerships between researchers and communities/public-participants. We asked artist partners to design four online workshops, one on each research priority area: school environments and mental health; wellbeing within the Somali community; air pollution; health data. We aimed to understand whether creative processes can enable public-participants and researcher- participants to meet in a neutral space to discuss a research theme and begin to build collaborative relationships through more equal engagement. Ideas could be taken forwards with seed funding, providing opportunity for collaboration to continue beyond initial workshops.MethodsDifferent artist partners designed and facilitated four workshops. Evaluation data was collected on each workshop using participatory observation and fieldnotes, alongside chatlog data, and one-to-one interviews with 21 workshop participants, providing a contextually rich, comparative evaluation across four diverse workshops. Analysis was thematically driven.ResultsArtist partners took different approaches to designing workshops. The workshops began with introductory games and activities, and there was less emphasis on introductions of people’s roles, with the intention to avoid hierarchical dynamics. Whilst public-participants enjoyed this, some researchers found it challenging and reported confusions over their workshop roles. Disrupting usual practice and challenging norms was not always an easy experience. There were examples where emergent, co-created knowledge was enabled. However, it was more challenging to facilitate longer-term collaborative research projects from the workshops due to different stakeholder priorities, and lack of staff time/ less sense of ownership for further work.ConclusionsCreative activities can influence and impact the types of conversations between public-participants and researchers in a way that changes and challenges power dynamics, shifting towards public-participant driven discussion. Whilst deconstructing hierarchies is important, supporting researchers is key so that any discomfort can be productive and experienced as a vital part of co-production. Longer term collaborative research projects were limited, highlighting a need for facilitation beyond initial workshops, and a sense of ownership from workshop participants to take things forwards. Workshops like these may lend themselves well to research prioritisation. However, taking community-led ideas forwards within research funding landscapes remains challenging.

Co-constructing collaboration: An evidence-based approach to advance and evaluate equitable global public health research partnerships.

Equitable global health partnerships are essential to promote innovative research and strengthen research capacity to address critical public health challenges, but how to optimally evaluate such collaborations is unclear. This was a sequential, multi-method study that utilized an electronic survey informed by the literature followed by semi-structured interviews to comprehensively evaluate the experience of participating in a global research-capacity building collaboration between Nepal and U.S. clinicians and investigators. De-identified quantitative survey were analyzed to calculate descriptive and summary statistics, along with crosstabs of each variable by group. Groups were defined based on country-of-origin and Chi Square statistics calculated to assess for statistically significant differences (p<0.05) between groups. Interviews were analyzed using a descriptive qualitative approach to develop an overall thematic map. 22 survey responses (52.4% response rate) were analyzed; 13 (59.1%) from Nepal, 9 (40.9%) from the U.S. Eight participants (4 Nepal; 4 U.S.) were interviewed. Over the course of the project, all participants reported gaining experience and confidence with research. The majority of participants "strongly agreed" there was a shared understanding of goals, priorities and strategies (Nepal, 58.3%, n = 7; U.S., 88.9%, n = 8;) and that power was shared equally (Nepal, 58.3%, n = 7; U.S., 55.6%, n = 5). The over-arching theme that emerged from the interviews was the importance of 'establishing community' which participants discussed within the broader context of COVID-19. Overall, team members reported strong bi-directional benefit and a greater emphasis on perceived benefits versus challenges. Our survey tool and interview guide, designed to holistically evaluate the impact of a global partnership across various levels of the Social Ecological Model, with particular attention to power dynamics and equity, can be adapted and used by others engaged in similar research capacity collaborations.

Privilege and prejudice must be recognized for equitable research partnerships.

Privilege and prejudice must be recognized for equitable research partnerships.

Equitable North-South partnerships for ethical and policy relevant research in times of uncertainty: a collaborative autoethnography from Ethiopia

ABSTRACT This paper considers the contribution of North-South partnerships in conducting ethical and policy-relevant research in times of uncertainty. Using collaborative autoethnography, we critically reflect on our experience conducting two related research projects in Ethiopia during the COVID-19 pandemic. We discuss how our research has adapted to take account of changing policy priorities in response to the crisis, how we implemented careful research practices, and which strategies we adopted to ensure providing timely and quality evidence for the governments, schools and parents. Importantly, we reflect on how our North-South partnerships and our close engagement with the Ethiopian government play a pivotal role in overcoming the uncertainty caused by the pandemic and adapting our research to meet the needs of key stakeholders. Grounded in our reflections, we provide a set of guidelines to establish equitable research partnerships in times of uncertainty.

'Glocalizing' land-use and forest governance in the tropics: examining research partnerships and international forest policies affecting Brazil, DRC and Indonesia.

Background: International and market forces are key drivers of deforestation and forest degradation, with transnational and market-based solutions in land-use and forest governance often missing economic, distributive, and environmental targets. Methods: This paper tackles both the framing and effectiveness of transnational initiatives affecting forest lands and peoples in the Global South, and the quality of relationships between institutions in the Global North and the Global South. Through more equitable research partnerships, this paper draws lessons from case studies in Indonesia (legality verification system in different forest property regimes), the Democratic Republic of the Congo (lifting of a moratorium on new logging concession), and Brazil (FSC in the Amazon region and the Amazon Fund). Results: International partnerships have privileged market-based instruments and commodity exchange between Global South and Global North countries, and the benefits of such mechanisms are unevenly distributed. Complementary and alternative policy instruments are discussed for each geography. Conclusions: Glocalizing land-use and forest governance implies in advancing equitable research partnerships between institutions in the Global South and Global North, and strengthening a community of practice for critical enquiry and engagement in partnerships for sustainable development. Land-use, climate and forest governance mechanisms must redress power dynamics, and partnership models, and commit to improving well-being and sustainable livelihood outcomes.

Disaster Diaries: Qualitative Research at a Distance

The common-place quantification of humanitarian disasters enables rapid and informed crisis responses. In disaster settings, understanding feelings and perceptions regarding individuals’ experiences, livelihood disruptions and coping mechanisms can also be valuable for extending and deepening quantitative insight. This paper explores the potential for diary methods to capture extensive, nuanced data from marginalised groups during a disaster, by drawing upon a study with 100 young diarists (aged 15–29) who produced 1418 diary entries over 4 months. In particular, we share how diary-methods can be designed inclusively, through addressing themes of equitable research partnerships, supporting more vulnerable participants, ensuring data quality, data management, participatory analysis, and budgeting for collaborative research.

“We should be at the table together from the beginning”: perspectives on partnership from stakeholders at four research institutions in sub-Saharan Africa

BackgroundGlobal health research partnerships have been scrutinised for how they operate and criticised for perpetuating inequities. Guidance to inform fair partnership practice has proliferated and the movement to decolonise global health has added momentum for change. In light of this evolving context, we sought in this study to document contemporary experiences of partnership from the perspective of stakeholders in four sub-Saharan African research institutions.MethodsWe conducted qualitative interviews with 20 stakeholders at research institutions in four countries in anglophone eastern and southern Africa. Interview questions were informed by published guidance on equitable research partnerships. Data was analysed through an iterative process of inductive and deductive coding, supported by NVivo software.ResultsEarly-career, mid-career and senior researchers and research administrators from four sub-Saharan African research institutions described wide-ranging experiences of partnership with high-income country collaborators. Existing guidelines for partnership provided good coverage of issues that participants described as being the key determinants of a healthy partnership, including mutual respect, role clarity and early involvement of all partners. However, there was almost no mention of guidelines being used to inform partnership practice. Participants considered the key benefits of partnership to be capacity strengthening and access to research funding. Meanwhile, participants continued to experience a range of well-documented inequities, including exclusion from agenda setting, study design, data analysis and authorship; and relationships that were exploitative and dominated by high-income country partners’ interests. Participants also reported emerging issues where their institution had been the prime recipient of funds. These included high-income country partners being unwilling to accept a subordinate role and failing to comply with reporting requirements.ConclusionsInsights from stakeholders in four sub-Saharan African research institutions suggest that contemporary global health research partnerships generate considerable benefits but continue to exhibit longstanding inequities and reveal emerging tensions. Our findings suggest that long-term support targeted towards institutions and national research systems remains essential to fulfil the potential of research led from sub-Saharan Africa. High-income country stakeholders need to find new roles in partnerships and stakeholders from sub-Saharan Africa must continue to tackle challenges presented by the resource-constrained contexts in which they commonly operate.

Expanding the Duty to Rescue to Climate Migration

Expanding the Duty to Rescue to Climate Migration

Seasons of research with/by/as the Keweenaw Bay Indian Community

In response to generations of inequitable research to/for Indigenous communities, many have and are developing research practices that center Indigenous priorities. In this paper, we share the Seasons of Research framework developed by the Keweenaw Bay Indian Community and University collaborators. First, we outline the scholarship that provides the foundations for research and being researchers in Keweenaw Bay. This section includes a comprehensive table that summarizes resources for building, strengthening, and sustaining equitable research partnerships with/by/as Indigenous communities. Next, we share the guidance for research partnerships we created together that uses the Medicine Wheel to illustrate an interconnected system of partnership teachings. The guidance aims for balance between and among four seasons of research: relationship building, planning and prioritization, knowledge exchange, and synthesis and application. Research partnerships with/by/as the Community demonstrate respect for each other's differences, honor reciprocity in actions, exemplify responsibility for differing commitments, and express reverence for shared lands, waters, and living beings. Personal reflections by lead author Emily Shaw are shared to demonstrate the process and practices associated with seasons of research, bridging Indigenous wisdom, social and natural sciences, and environmental engineering. We conclude with a few words on the transformation of the research landscape with Indigenous peoples at home and abroad.

Understanding the Impact of Equitable Collaborations between Science Institutions and Community-Based Organizations: Improving Science through Community-Led Research.

To advance justice, equity, diversity, and inclusion in science, we must first understand and improve the dominant-culture frameworks that impede progress and, second, we must intentionally create more equitable models. The present authors call ourselves the ICBOs and Allies Workgroup (ICBOs stands for independent community-based organizations), and we represent communities historically excluded from the sciences. Together with institutional allies and advisors, we began our research because we wanted our voices to be heard, and we hoped to bring a different perspective to doing science with and not on communities. We created a community framework to guide our research and we led all aspects of our work, from creating research protocols to analyzing and interpreting the data to disseminating the results. We share our research framework, methods, and results so that science institutions can better understand how to intentionally create more equitable research partnerships with our communities.

What does it take to have a mutually beneficial research collaboration across countries?

AbstractWe reflect on the challenges researchers face when working in multi‐national collaborations in conservation science, whereby the researchers' countries are unequal in terms of financial and institutional support or other factors that contribute to a power imbalance. Based on our personal experiences and challenges, we outline four key aspects of the research cycle that provide opportunities to build or strengthen more equitable research partnerships: defining the shared research agenda, obtaining funding, publication, and the connecting thread of effective communication. We give recommendations for both the visiting scientist and the local scientist hosting international collaborators, as well as for institutions involved in conservation science. We hope that our perspectives can help other conservation scientists achieve productive and mutually beneficial collaborations that can lead to positive conservation outcomes.

‘Grey areas’: ethical challenges posed by social media-enabled recruitment and online data collection in cross-border, social science research

Are social science, cross-border research projects, where recruitment and data collection are carried out remotely (e.g. through social media and online platforms), required to follow similar ethical and data-sharing procedures as ‘on-the-ground’ studies that use traditional means of recruitment and participant engagement? This article reflects on our experience of dealing with this question when we (multi-national but UK based researchers) had to switch to online data collection due to the restrictions posed by the COVID-19 pandemic, such as the inability to travel or work in person with local communities and collaborators. Using social media platforms and online data collection when conducting research brings many advantages, such as being able to communicate remotely but directly with gatekeepers and collaborators, and in reaching potential participants on a global scale. However, neither the guidelines and advice for conducting ethically sound internet-based research, nor the academic literature focussed on building equitable research partnerships between the Global North and the Global South, offer much information regarding the ethical concerns, or address the grey areas, posed by this type of digital and distanced transnational research. In our experience, conducting research remotely made negotiations of access very challenging due to the politics of positionality between Global North and South researchers, lack of clarity on ethical processes and (mis)perceptions of gatekeepers who we could not meet in person. We hope the reflections on, and discussion of, our experience encourage deliberation on the present ethical challenges posed by online and social-media-disseminated data collection, particularly in cross-border circumstances.

A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda

BackgroundThis case analysis describes dilemmas and challenges of ethical partnering encountered in the process of conducting a research study that explored moral and practical dimensions of palliative care in humanitarian crisis settings. Two contexts are the focus of this case analysis: Jordan, an acute conflict-induced refugee situation, and Rwanda, a protracted conflict-induced refugee setting. The study’s main goal was to better understand ways humanitarian organizations and health care providers might best support ethically and contextually appropriate palliative care in humanitarian contexts. An unintended outcome of the research was learning lessons about ethical dimensions of transnational research partnerships, which is the focus of this case analysis.DiscussionThere exist ongoing challenges for international collaborative research in humanitarian conflict-induced settings. Research partnerships were crucial for connecting with key stakeholders associated with the full study (e.g., refugees with life limiting illness, local healthcare providers, aid organization representatives). While important relationships were established, obstacles limited our abilities to fully attain the type of mutual partnership we aimed for. Unique challenges faced during the research included: (a) building, nurturing and sustaining respectful and equitable research partnerships between collaborators in contexts of cultural difference and global inequality; (b) appropriate ethics review and challenges of responding to local decision-maker’s research needs; and (c) equity and fairness towards vulnerable populations. Research strategies were adapted and applied to respond to these challenges with a specific focus on (d) research rewards and restitution.ConclusionsThis case analysis sheds light on the importance of understanding cultural norms in all research roles, building relationships with decision makers, and developing teams that include researchers from within humanitarian crisis settings to ensure that mutually beneficial research outcomes are ethical as well as culturally and contextually relevant.

"It has to be designed in a way that really challenges people's assumptions": preparing scholars to build equitable community research partnerships.

Clinical and Translational Award (CTSA) programs are developing relevant training for researchers and community stakeholders participating in community-engaged research (CEnR). However, there is limited research exploring the ways community stakeholders and partners with key CEnR experiences can inform and shape training priorities for prospective CEnR scholars to build meaningful and equitable partnerships. This study conducted and analyzed online individual semi-structured in-depth interviews with community stakeholders (n = 13) engaged in CEnR to identify training priorities for graduate students and emerging scholars. Thematic analysis of 13 interview transcripts revealed four major training priorities for prospective scholars interested in engaging in CEnR: 1) researcher's positionality, 2) equitable power sharing, 3) funding, and 4) ethics. Building equitable research partnerships was a central theme woven across all four training priorities. Further research should focus on examining the development, implementation, and evaluation of CEnR training in partnership with community stakeholders and partners with relevant CEnR experience. Adopting a collaborative approach to incorporate both community stakeholders and researchers' priorities can align training competencies to better prepare scholars to engage in building research partnerships.

Strategies to Enhance Culturally Responsive Research: Community Research Recommendation Tool.

Under-representation of minorities in research hinders the ability to address persistent societal inequities. To understand how to increase the cultural responsiveness of research, a community-academic partnership conducted listening sessions and community forums with African Americans in North Carolina, Native Hawaiians in Hawai'i, and Hmong and Latino/a/x communities in Minnesota. Participants shared their concerns and desires for research, as well as generated strategies aimed at communities, researchers, and partnerships to enhance culturally responsive research practices. These findings resulted in a Community Research Recommendation Tool (CRRT) that can be used to guide community members, researchers, and partnerships as they build equitable research partnerships that honor cultural practices, account for sociopolitical contexts, and aim to redress societal inequities.

Developing an Infrastructure to Cultivate Equitable and Sustainable Community-Academic Research Partnerships: Meharry Community Engagement Core

ObjectivesAchieving health equity and reducing racial and ethnic health disparities require intentional community engagement efforts by academicians. Primary among these efforts is the acknowledgement of research-related mistrust. Efforts to build trust must begin with recognition of the invaluable knowledge and experience community stakeholders possess. MethodsThe Meharry Community Engagement Core builds on the foundation provided by Meharry Medical College, a Historically Black College and University, to achieve its mission to improve health and health outcomes through long-term collaborative research partnerships with community stakeholders. Early in its development, the Core actively engaged community stakeholders throughout all research phases. ResultsEarly successes include achieving community feedback on research priorities, policies, and procedures and developing partnerships that span the research spectrum. Core work to date is promising and may serve as a model for addressing research-related mistrust and efforts to build trust.

Promoting Meaningful and Equitable Relationships? Exploring the UK’s Global Challenges Research Fund (GCRF) Funding Criteria from the Perspectives of African Partners

Against a backdrop of historic inequities between Northern and Southern scholars, the UK’s Global Challenges Research Fund (GCRF) calls for “meaningful and equitable” research partnerships between UK-based academics and partners in the Global South. This paper draws on qualitative data from three workshops in the Ethiopia, Rwanda and the UK to interrogate GCRF funding criteria from the perspectives of African-based research partners. The GCRF criteria are considered with respect to African partners’ experiences of, and aspirations from, such international research partnerships in order to enrich and extend ongoing debates about power relations in development research. The study finds that GCRF criteria do address many of the familiar historic concerns of African partners, while also identifying ways in which this and similar funding schemes may unintentionally reproduce structural inequities within the South. In highlighting these less visible equity concerns, the paper draws lessons for funders, academics and others concerned with establishing genuinely equitable research partnerships.