Since 2016, NIHR has established a substantial Global Health Research Portfolio and has positioned itself as a major funder of high quality global health research that directly addresses the diverse health needs of people in low and middle income countries (LMICs).
The involvement of patients and communities is integral in NIHR’s research commissioning processes and in the research it funds. Collaborating with patients and the public is essential to achieving research impact, as evidenced by NIHR’s pioneering work to date on involving patients and the public.
Through developing this vision statement and the goals below, we aim to provide clarity about our ambitious approach within the global health context, and as a framework to hold ourselves to account.
Our vision for community engagement and involvement
NIHR’s community engagement and involvement (CEI) vision 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.
We believe that this will improve the relevance, quality and impact of the research produced. And that a commitment to meaningful CEI from the start will lead to greater understanding and uptake of research findings in policy and practice, ultimately improving the health and wellbeing of communities in LMICs.
What we mean by CEI
NIHR uses the term CEI to refer to patient and public involvement (PPI), that is used within the UK, in the global health context. The two terms are both used to describe how members of the public’s voices can be heard in research, and both are underpinned with the commitment to promote inclusion.
NIHR is recognised as a pioneer in the PPI UK context, which includes systematic processes for amplifying the public voice in decision making and significant infrastructure in the research sector to support public involvement in research. 100% of all our research and activities in the UK involves patients, service users, carers and the public in some way.
We are building on this strong track record, whilst acknowledging the different landscape and context. The umbrella term ‘community engagement’ tends to be used widely within the global health research community, and we use community engagement and involvement (CEI) because it encompasses the full spectrum and levels of partnership with communities.
It is important to recognize that, unlike PPI in a UK health research context, CEI within international public health collaborations requires navigating complex dynamics of power and distinct ethical frameworks.
CEI methodologies offer more meaningful and sustainable ways in which to address these complexities, as the approaches enable the most marginalised voices to get involved. Instead, the processes more commonly associated with PPI in the UK context do not traditionally take a bottom up approach to engaging with communities and wider stakeholders beyond patient groups.
Identifying ‘the community’ can be one of the most challenging aspects of any global health research project. Whilst this can sometimes be a geographic or place based community, it is more commonly a group of people with common interests, concerns or identities.
It is important to recognise the complexity, diversity and power imbalances within all communities and consider using approaches which empower community members to participate in decision making, planning, implementation and evaluation, rather than engaging them as ‘beneficiaries of programmes’.
- Further reflections on empowering meaningful CEI in global health research can be found in our learning resource, written by Dr Erica Nelson, Institute of Development Studies (IDS), and commissioned by NIHR.
Why CEI is important to NIHR
NIHR has given significant emphasis to CEI as part of the UK Government’s commitment to the 'Leave No One Behind' agenda, a central and transformative promise of the 2030 Agenda for Sustainable Development and its Sustainable Development Goals (SDGs).
This commitment requires researchers and other stakeholders to consider issues of marginlisation, discrimination and inequality, and identify measures to address these challenges when undertaking research.
NIHR has developed a Theory of Change to visually represent our Global Health Research Portfolio and the logic through which the portfolio aims to bring about its intended outcomes and impacts. CEI is a key overarching principle to which all applicants must give consideration through the research project cycle.
Our goals for CEI
We have developed three goals to guide our work as we develop our longer-term approach. These goals aim to inspire and build understanding of effective CEI approaches so people, patients and communities can collaborate with researchers and academics to influence research thereby improving outcomes.
Goal 1: To promote a culture of creativity and innovation in CEI, sharing learning and contributing towards the wider CEI evidence base.
- We will share our experiences with other funders and stakeholders, so we can learn from each other’s successes and failures. We will also look into building partnerships with others working in this area.
- We will explore meaningful ways in which to monitor and evaluate the CEI impact of our funded research. The NIHR Global Health Results Framework includes CEI as one of the compulsory core indicators; the framework will enable us to draw out CEI overarching findings, including how CEI delivers meaningful outputs and outcomes.
- We will help build evidence on the different ways CEI can enhance and support the translation of research at the policy, public and community levels. This could include platforms such as the ARCH knowledge hub on The Global Health Network.
- We will work in partnership with our award holders and community stakeholders to disseminate learnings about CEI in a variety of ways including blogs and papers in journals, as well as community based approaches such as Theatre for Development or community media.
- We will showcase examples of effective practice and lessons learnt through the NIHR website, portfolio wide showcasing events, blogs, round tables, impact case studies, podcasts as well as at external events.
Goal 2: To improve access to high quality CEI resources and networking opportunities for NIHR’s global health research applicants and award holders.
- We will build innovative collaborations with key organisations in the CEI sector to ensure we are dovetailing our efforts rather than duplicating. This includes the two key partners we are working with to develop CEI resources:
- The Mesh community engagement network, a collaborative community that supports networking and sharing of good practice, to bridge the gap between the research community and the general public in LMICs. We have collaborated with Mesh to signpost researchers to CEI resources of particular interest to people applying for NIHR funding and are now developing together some online training modules on CEI.
- The Institute of Development Studies (IDS), renowned for producing high quality evidence linked to real-world global health and development challenges. Together we are developing a series of CEI resources to support meaningful involvement of communities in global health research projects.
- We will develop opportunities for shared learning with our funding and delivery partners, and support collaborative, iterative learning approaches informed by their experiences. We aim to convene opportunities to network/collate innovations at regional and global levels, including opportunities to build learnings from LMICs.
Goal 3: To promote the integration of meaningful CEI both within our commissioning processes and in the life cycle of research funded.
- We will continue to innovate the approaches and processes which underpin CEI within our research funding decision making. We strengthen the involvement of LMIC public contributor perspectives in the funding process (public review and committee membership), building the skills and expertise of those with ‘lived experience’ as well as specialist knowledge of CEI.
- We will use the learning from our pre-award development awards and other activities to find different ways of supporting early-stage partnerships between researchers, patients and communities.
- We will continue to promote CEI as a core criterion in our internal processes by providing resources and clear guidance about CEI so reviewers and committee members are clear about our expectations and aspirations.
- We will encourage applicants to meaningfully collaborate with patients/ carers or members of LMIC communities within research proposals across the portfolio e.g. the inclusion of community co-applicants when appropriate. We have made CEI a core criterion of NIHR’s global health programmes funding. We will not be prescriptive about how CEI should take place, but rather encourage our award holders to be innovative and creative.
- We will ensure commitment to CEI is continued once funding is awarded, monitoring and providing feedback against milestones through the life of the project. We will reach out to our award holders, as well as stakeholders such as LMICs policymakers, communities and civil society to build the evidence from their own journey.
We are committed to continuing to be transparent about our processes and vision for CEI. We will deliver on this commitment by actively engaging our key stakeholders - the global health research community, LMICs communities and civil society as well as our partners and other funders - on progress and delivery of these CEI aspirations and goals.
The broad term ‘communities’ is used here to include patients, carers, policy makers, health care workers, community organisations, faith groups, service commissioners and others who might be considered key stakeholders.