Overview
Since 2017, the Center for Global Health Studies (CGHS) of the Fogarty International Center at NIH has led the
Advancing Health Research in Humanitarian Crises project. This project resulted in several workstreams and deliverables aimed at catalyzing timely, high-quality, ethical and actionable research in humanitarian crises and strengthening the capacity of scientists, especially from low- and middle-income countries (LMICs), to conduct health research in crisis settings.
Throughout the course of this project, CGHS consistently heard from stakeholders that effective community engagement in research conducted in crisis settings is a critical need. CGHS is currently exploring potential activities to increase awareness, share strategies and lessons learned, and help strengthen capacity for community engagement in these unique contexts.
While our initial efforts to understand the current landscape have clearly shown the need for community engagement in research, there is much less information regarding how to do it well in crisis settings. Our stakeholders and partners have also noted that the onus should rest not only on researchers, but research funders can and should do more to better integrate community engagement into research grant support, processes, and timelines.
The consultation summarized in this report sought to better understand how CGHS might facilitate dialogue among researchers and other critical partners, develop useful resources, and highlight the need for effective community engagement in health research in crisis settings. CGHS developed questions of interest and engaged diverse experts in humanitarian health research and community engagement to better understand the current landscape and identify areas where CGHS might contribute most effectively.
Methods
The CGHS team generated a list of illustrative questions to guide the consultation (Appendix A). The questions were designed as a starting point and not intended to be prescriptive. Initial participants were selected and invited based on their expertise or relevant publications in humanitarian health and/or community engagement. After participants accepted the invitation, they were provided with the list of illustrative questions in advance of a video call in addition to some background on CGHS’ interest in the topic. Snowball sampling was employed as each participant was asked to identify other potential participants at the conclusion of each discussion. Each consultation was scheduled for one hour and responses were captured via Zoom recording (with the participants’ consent) and through notes taken by CGHS staff.
A total of 19 consultations were conducted with a diverse group of experts in the field. Nearly half of the participants were from LMICs, including individuals from Africa, Asia, Latin America, and Middle East regions (note: the geographic spread was heavily influenced by the snowball sampling technique).
Participants represented academic institutions, non-governmental organizations (NGOs), government agencies, and multilateral organizations. More than half of the participants were female.
Challenges
Participants identified many challenges to conducting actionable and ethical community engaged research in the context of humanitarian crises. The observations below represent some of the most significant challenges identified by participants, though this is not intended to be a comprehensive list.
Identifying Community Representatives
- Lower levels of social cohesion in populations impacted by crises often complicate identification of "the community".
- Tribal, clan, and other ethnic and social differences can pose difficulties when trying to engage a representative sample of the community.
- Instability heightens pre-existing power dynamics and can give gatekeepers (persons who influence access to a community) more control over who in the community engages in research.
Building Relationships
- Researchers, especially in acute crises, lack preexisting relationships or connection to the community of interest.
- Undefined or dismantled community leadership in crises can make it difficult to solicit community participation through formal or obvious channels.
- Hostile environments pose threats to researchers, community partners, and participants alike and complicate engaging the community.
Ethical Considerations
- The extreme emotional and mental trauma experienced by populations living through crises requires a thorough understanding and concern for ethical considerations.
- The heightened vulnerability of populations affected by crises can impact research quality, as some topics are too traumatic for participants to engage with or recall accurately.
- Communities in these settings are often too burdened with other challenges to be engaged in research.
Timelines
- The heightened sense of urgency in these settings conflicts with traditional slow research timelines and greatly compresses the time available to build relationships and conduct meaningful engagement with communities prior to and during a research study.
Funding Issues
- There is a lack of funding to support research and community engagement in the humanitarian context.
- The identification of research priorities is usually not driven by communities in crisis settings, but rather guided by funders’ agendas and international emergency response needs.
- The role of researchers is often conflated with that of NGO/aid workers and participants can have misplaced expectations for aid.
In light of these significant challenges, the consultation participants suggested prioritizing two areas of focus 1)
the role of funders and 2)
capacity needs to enable researchers to better mitigate the challenges of conducting meaningful and effective community engagement in crisis settings.
Priority Areas
The Role of Research Funders
Participants highlighted the role of research funders as a critical area in need of more attention. The general consensus among consultation participants was that most funders and funding agencies recognize the importance of community engagement. It is widely accepted as good practice for research, especially in the context of crises. However, participants strongly suggested that the way community engagement is valued by funders and the research community needs to be better reflected in funding mechanisms and timelines.
Participants made the following recommendations for actions that funders can take to better promote and support community engagement in crisis settings:
- Address the lack of standardization in how community engagement is defined/required in funding opportunities by creating or funding the development of indicators to measure community engagement.
- Ensure funding for community engagement spans the entire research cycle from planning to implementation to dissemination.
- Mandate community engagement in funding opportunities, but also require built-in evaluation that measures how the community was actually engaged and assesses the impact of the engagement.
- Issue funding calls that require researchers to demonstrate
how they are going to engage the community and
how they are going to train researchers and data collectors on community engagement.
- Support protected time for scoping and engaging communities before the start of a research study.
- Fund training modules where community members are planning (or ideally leading) training for researchers on strategies to better engage communities in research.
- Engage communities in priority setting to identify the main challenges and problems on the ground.
- Provide adequate budget for community engagement, including funding specifically for dissemination to ensure outputs and findings from research are made accessible to community.
- Review the timing and length of funding cycles and assess impact on community engagement.
- Consider creative funding models that better reflect and account for community input, such as:
- Seed grants or supplements for community engagement that allow for an initial six months of scoping work prior to the start of a study.
- A separate fund for one-year preliminary community engagement grants with the expectation that the community engagement activities will lead to bigger funding proposals.
- A staged model where the first amount of funding supports co-learning, partnerships, and needs assessments, and subsequent funding goes towards long-term research activities.
- An extra year of funding following a study solely for dissemination activities to reach the community.
Capacity Needs
Participants acknowledged a need for capacity strengthening among researchers conducting community engagement in the context of humanitarian crises. Most participants were not formally trained in community engagement and learned these skills in the field. They suggested it is harder to establish community engagement guidelines in crisis settings as they are incredibly dynamic, complex, and diverse. In these contexts, toolkits on community engagement often feel too “one size fits all” and become more of a token checklist. Participants emphasized that any training or toolkit in community engagement should focus on cultural sensitivity and equity as these are often lacking in current standards of community engaged research.
The following participant recommendations address gaps and ways to bolster capacity for conducting community engaged research in crises:
- Build a collection or repository of good practices to make learnings accessible to researchers across different regions and types of crises.
- Pair training on community engagement with funding opportunities to provide researchers the opportunity to put learnings into practice.
- Support and develop training that is led by community members or community-based groups.
- Implement community engagement training that prioritizes cultural humility and removing existing biases and blind spots.
- Train researchers on identifying who is the community, how to approach communities, and how to involve and integrate community engagement throughout the entire research cycle.
- Develop training and tools to ensure consent is meaningful and understood, especially with vulnerable populations.
- Consider providing direct funding to communities to lead their own research to address local priorities.
Discussion & Reflections
Participants shared short- and long-term perspectives on how to improve community engaged research in crises. Their comments repeatedly emphasized that community engagement is practiced on a continuum and any action that helps move a researcher forward on that path is a good step. This continuum spans low levels of engagement like basic information sharing with a community, to much more involved engagement like actual collaboration at stages of the research process or shared leadership with the community throughout a study. In the short term, research teams should focus on ensuring community engagement is conscientiously practiced and adequately funded. The long-term view considers how to strengthen capacity, address imbalanced power differentials between grantees and communities, and eliminate tokenism to eventually enable local researchers and communities to take the lead in addressing local problems.
Participants emphasized that the role of funders should not be underestimated or overlooked in supporting effective community engagement across the research cycle. Among others, the consultation highlighted two critical questions for future consideration: How should ethical or high-quality community engagement be evaluated? How can we better assess the actual impact of community engagement on the effectiveness of health interventions? Although this consultation was specific to community engaged research in crisis settings, these questions could apply to community engagement in global health research more generally.
A significant takeaway from the consultation was the suggestion that community engagement is prioritized and done better in humanitarian health research grants and calls for proposals than in traditional global health research grants and funding calls. Elrha, a UK-based NGO, and its Research for Health in Humanitarian Crises program (R2HC) were consistently cited as the best example of a funder supporting community engagement. Learnings about community engagement from humanitarian health research could be relevant to community engagement in stable settings, especially in regard to vulnerable populations.
Report Information
Consultation period: August 16, 2022 - October 28, 2022
Report prepared by: Arina Knowlton and Blythe Beecroft, Center for Global Health Studies, Fogarty International Center, NIH
Appendix A: Consultation Questions
- What is different about community engagement in crisis settings compared to stable settings (referring in both cases to low-resource settings)?
- What are the main challenges to community engagement in research in humanitarian settings?
- How could research funders best encourage and support community engagement in research funding calls and grants?
- What are the greatest capacity needs for community engagement in research in crisis settings?
- How do community engagement and related research methodologies differ in protracted crises versus acute crises?
- Within the field of humanitarian health, are there any specific phases of the spectrum of community engagement that stand out to you as most relevant or important? (i.e., development, implementation, data analysis and interpretation, dissemination, etc.)
- Are there any toolkits or trainings on community engagement that you are aware of and/or use? Of these, are any particularly well suited for humanitarian settings?
- How can CGHS best contribute to the field of community engaged research in crisis settings without duplicating existing efforts (e.g., see the possible activities listed above)?
- Is there anyone else you recommend we speak with, especially from LMICs?
Updated July 25, 2023