Written by Heidi Surridge. Heidi is a Senior Research Manager in the Community Engagement and Involvement (Global Health) team at the National Institute for Health and Care Research.
I have a lot of respect for the evolution of community engagement in Global Health research and development. It evolved over time drawing on learning from the fields of social science, Global South development, politics, bioethics, biomedicine and social justice as well as applied health research.
I am also proud of the ethos and journey of patient and public involvement (PPI) and engagement (PPIE) in the UK and the Global North. The National Institute for Health and Care Research (NIHR) have been leaders in ensuring the public voice is heard in research, be it from individuals, groups or broader intersectional communities.
As the NIHR Global Health Research programmes became more established we wanted to make sure that both the underpinning ethos of community engagement and patient and public involvement were encompassed in our terminology giving rise to our use of the term “community engagement and involvement (CEI)”.
Practicing community engagement and involvement (CEI) is a core expectation of all researchers undertaking global health research funded by NIHR. We have a vision and goals for CEI where those affected by research should be included in prioritising, shaping, implementing, evaluating and disseminating research. Those community voices should be inclusive of all relevant groups, leaving no one behind.
But how is it done? Why do we not have a step-by-step guide to CEI?
Regardless of the research topic, communities are made up of many groups. These groups do not exist in isolation. People are members of multiple groups at one time – demonstrating the intersectionality of everyday life. Personally, I’m not just a member of the female community but also the parent, ethnically white, invisible disability and carer communities to name just a few!
Countries, regions and locales may not have the same infrastructure, social systems, cultural norms or even languages.
Political, social and environmental circumstances can suddenly change.
The goals of CEI will differ depending on the research design, topic and the values of all involved (communities, stakeholders and researchers).
Therefore, how would prescriptive guidance meet the complexity of globally diverse communities? The research community, however, naturally want clarity on what we mean by CEI and what it entails. In response, we have been on a journey of development to create a set of Guiding Principles for CEI. Whilst not prescriptive, we are aiming to provide a conceptual framework from which CEI can be realised practically, reflecting the huge contextual variation in global health research.
The NIHR journey towards a set of guiding principles for CEI
An initial scoping review of the literature explored the elements of good practice in designing and undertaking CEI in health research. Early feedback on the emerging principles was sought from a group of CEI Leads across NIHR awards and from an independent group of CEI experts formed to advise on the work. We are currently building consensus on these principles through a public consultation survey and are delighted to say we have received 211 responses by the closing date (1 December 2023)!
Introducing the principles for CEI
In no specific order the principles are:
Understand your communities
CEI should be appropriate and relevant to the local context and research aims
Involve the community at the earliest opportunity and throughout the process
Build open, trusting and mutually beneficial relationships
Promote power-sharing
Be flexible and creative
Embed monitoring, evaluation and learning
These 7 principles will be accompanied by a more detailed description. Each principle will be supported and illustrated by some examples of how the principles are achieved in practice (as shared by respondents to the public consultation survey).
These new guiding principles aim to clarify the NIHR expectations of CEI. They seek to provide stronger guidance for the global health research community in developing CEI plans that are robust, appropriate and effective for both the local context, community needs and will inform the study design. They can also provide a useful framework for our funding committees and peer reviewers to refer to when assessing the CEI aspects and approaches embedded within research applications.
If you would like to be kept informed of the NIHR Guiding Principles for CEI including their launch, please contact the NIHR CEI working group via ceiglobalhealth@nihr.ac.uk.
We invite members of our community to write and submit blog articles for publication on issues relating to the involvement of people, patients, carers and the public in health and social care in a global context. Please contact Katie Porter (k.s.porter@soton.ac.uk) for more information.