Blog: My journey from leprosy patient to supporting communities and shaping research
Engage and involve communities
NIHR is committed to engaging and involving communities from low and middle income countries (LMICs) in designing and delivering global health research.
Community engagement and involvement: a core component of your research
NIHR's vision for Community Engagement and Involvement (CEI) is that all global health research is undertaken in collaboration with the communities who are most likely to be affected by the research outcomes.
We want to enable those who are marginalised to have a meaningful voice both in the research funding process, as well as in the design, delivery and dissemination of research.
Involving communities in LMICs who are affected by the health challenge you are researching will improve the reach, quality and impact of your research.
If you don’t have CEI in this project, it cannot work. It runs throughout, the project starts and ends with CEI. Our research project is not for the communities, it is with the communities.
Professor Lisa Dikomitis
All applicants for NIHR global health research funding are required to plan for and undertake active and participatory CEI. This is known in the UK as patient and public involvement and engagement (PPIE).
Who should you involve and how?
Key groups normally included in CEI are patients, carers and vulnerable groups. Community leaders, non-governmental and civil society organisations, faith groups, service commissioners and providers, and policy and law makers are examples of other types of stakeholders.
There is no standard model for CEI. Applicants should demonstrate that their CEI approach is appropriate and effective in the local context and for their study design, and that those in the community who are most affected are empowered to contribute towards decision-making.
Once research funding has been awarded, CEI activities are monitored for the duration of the research and are included in our final overall impact assessment at the end of the study.
Our CEI toolkit
The NIHR has partnered with the Institute of Development Studies (IDS) to produce a series of learning resources to support researchers to deliver meaningful, outcomes-based CEI.
- Resource guide for CEI in global health research. Dr Erica Nelson from IDS gives a detailed overview of the principles driving CEI, learnings from case studies and useful resources. (The Resource guide for CEI in global health research is also available as a PDF).
- Empowering meaningful CEI in global health research. CEI practitioners offer learnings and reflections to help guide decision-making within the context of collaborative research. This guide also provides practical advice about how to define a community, and how to reach community members in accessible and inclusive ways. (The Empowering meaningful CEI in global health research guide is also available as a PDF).
- Ethical dimensions of CEI in global health research. This guide provides insights and reflections from CEI practitioners on how to share power in the context of community-engaged health research, and what ethical dilemmas have been raised by doing CEI during the COVID-19 pandemic. It includes practical frameworks and tools to help you navigate the complex dynamics of doing CEI ethically and meaningfully. (The Ethical dimensions of CEI guide is also available as a PDF, and you can watch a webinar on ethical dimensions of CEI on the NIHR YouTube channel)
- What does it mean to take a 'leave no one behind' approach to CEI in global health research? In this final guide of the series, we bring together CEI thought leaders to reflect on their own practice of CEI and what it has meant to their work to integrate an 'leave no one behind' perspective – a central principle of NIHR's CEI vision. Topics covered include how you can be inclusive without being tokenistic, as well as whose knowledge ends up ‘counting’ in global health – referring here to indigenous knowledge and perspectives. (The 'Leave no one behind' approach to CEI in global health research guide is also available as a PDF, and you can listen to the authors discuss the topic in an episode of the NIHR podcast).
Other useful guidance
- The UNICEF minimum quality standards and indicators in community engagement act as a guide for establishing intentional and structured community engagement at the core of sustainable development progress.
- UK Standards for Public Involvement are a useful resource for planning and evaluating CEI.
- The NIHR guidance on co-producing a research project explains the term 'co-production' and the key principles and features of working with the public to co-produce a research project.
- The NIHR payment guidance for researchers and professionals outlines how to cost public involvement activities at any stage of the research process.
- The MESH community engagement network is a collaborative community that supports networking and sharing of good practice. We’ve worked with the Network to deliver CEI resources of particular interest to people applying for NIHR funding. We also launched the Global Health CEI Advisory Network to bring together people with knowledge and experience of public involvement in research and community engagement in LMICs.