Published: 25 February 2021
Enabling patients and communities to have a genuine voice in global health research - from the funding process to study design, delivery and dissemination - is essential to achieving research impact that can change lives, particularly for the most vulnerable and marginalised communities. Erica Nelson and colleagues from the Institute of Development Studies outline the shared learnings from the first in a series of webinars with NIHR to support researchers to effectively engage and involve communities in global health research.
NIHR champions community engagement and involvement (CEI) as a core principle of its global health research portfolio, alongside equitable partnerships and local research capacity strengthening. All applicants for NIHR global health research funding are required to plan for and undertake active and participatory CEI.
To help researchers consider how best to approach CEI, in January NIHR and the Institute of Development Studies hosted the first in a series of interactive webinars exploring CEI within NIHR global health research, funded by UK Aid.
The series aims to inform and support applicants to NIHR’s global health research programmes as they develop their approaches to achieve real and sustained engagement with communities and stakeholders in their proposed research.
Reflecting on experiences
Our first webinar introduced some critical considerations and reflections from experiences of efforts to empower communities through meaningful engagement and involvement in global health research. It featured a presentation by Walter Flores of Centro de Estudios para la Equidad y Gobernanza en los Sistemas de Salud (CEGSS), drawing on his 25+ years of experience facilitating CEI with indigenous communities in Guatemala and elsewhere.
Participants and facilitators raised several key points during the webinar:
We must always respect people’s dignity. Many of the communities that researchers engage may already be marginalised and vulnerable, with attacks on their dignity commonplace. They do not need researchers adding to these circumstances through a lack of self-knowledge or inadvertent harmful practices.
We should be aware of our privilege and power at all levels – from accessing to funding and resources through to the cultural appropriateness of our research practice – and strive to empower by always seeking honest dialogue with people, setting realistic expectations, respecting agreements, and practicing cultural humility.
Challenges when engaging with communities
We noted several challenges when empowering communities through research, including building and sustaining knowledge and empowerment that remains and extends beyond a single research project; going beyond informed consent to building trust; and learning from and adapting to changes in community contexts.
Facilitators and participants offered up examples of approaches to navigate these challenges, such as through the co-design of research questions, processes and dissemination; jointly considering research findings and their implications; and promoting community voices in research governance, including in advisory groups and steering committees.
Our discussion identified the need to think carefully about the skills, capacities and resources needed for effective CEI. As well as a team with different research disciplines, skills and experiences, what about other expertise, including people with backgrounds in community organisation and mediation, journalism, or stakeholder engagement? How might partners establish alliances with organisations better placed to navigate the often complex social, political and cultural environments and more effectively engage and involve communities?
CEI as a key concern for global health research
Given the participants who joined the webinar, including many from low- and middle-income countries, there is clearly a lot of valuable, existing expertise in the community of CEI practitioners seeking NIHR funding. Many felt that more opportunities are needed to share experiences from different contexts, including and beyond this webinar series.
CEI must be treated as a key concern for anyone carrying out global health research. All members of NIHR applicant teams, not just CEI specialists or personnel assigned roles and responsibilities, should take CEI seriously to fully embed it in projects.
Finally, people raised the importance of careful consideration and strategies for working with COVID-19 affected communities. These strategies should be informed by understanding of contexts and support from partners.
Our first webinar provided a useful space for sharing some experiences and learning, discussing considerations and challenges, and creative approaches to problem solving. There are lots of issues still to discuss, and much knowledge from current and prospective NIHR award holders to exchange. We hope those who joined the first session found it useful. Please look out for more webinars and resources from the series during 2021 to support CEI design, planning and practice.
Erica Nelson, Alex Shankland, Mieke Snijder, Sophie Marsden, and Tom Barker, Institute of Development Studies; Walter Flores, Centro de Estudios para la Equidad y Gobernanza en los Sistemas de Salud
Photo: Meeting on participatory analysis of data held with communities in Sacatepequez Province, Guatemala. (Credit: Walter Flores)
If you would like more information about the webinar series or to share your reflections about this piece, please contact the CEI team at the NIHR Central Commissioning Facility on firstname.lastname@example.org.