Community engagement in health and care research

Community engagement is a process where organisations work together with and listen to the communities they serve. It is a reciprocal, mutually-beneficial, and ongoing process that focuses on building long-term trust. Through community engagement processes, organisations work together with communities to achieve change. In health and care research, we may engage with communities for a number of reasons: 

To ensure the research that we do meets the needs of our communities, both in terms of research priorities, and how research is designed and delivered;

To increase awareness about opportunities to take part in or inform research, and improve representation of under-served groups in the research we do; 

To enable research to take place in the places it is most needed (for example, in areas or communities that are more affected by a health condition or issue). 

What do we mean by community?

Community is a broad term that is defined by the context we are working in, and our local population. There are a few different types of communities that will exist within the populations we work with and serve (Lancaster District Community Engagement Guidance 2020): 

Community of place: A group of people who share a locality or geographical area, such as, a neighbourhood, a housing estate, or a village. This location will have physical boundaries. 

Community of interest: A group of people with a shared interest or experience. A community of interest includes people who use a service, such as patients registered with a GP practice or mental health service. Other examples of communities of interest, include people with lived experience or who are affected by a health condition, library users, students at a university, people interested in improving local health services, members of a dementia support group. 

Community of identity: A group of people with something in common, either how they identify themselves or how they are identified by society. This is usually by demographic characteristics, such as, age,  ethnicity, faith, gender, sexual orientation, gender identity, disability). 

It is important to recognise that people can be part of many communities, and that communities themselves are diverse. Some people may or may not identify as belonging to a community.

Meaningful, reciprocal community engagement can benefit the research process at each stage of the journey, as outlined below. 

Identification and prioritisation 

• Working with communities can help to ensure that research topics identified are those that matter to and meet the needs of our communities, and that the research will benefit these communities. 

• It may also help to identify new priorities and topics that we wouldn’t have thought to research or prioritise. 

Research design 

• Working with communities can help to ensure that the research focuses on outcomes and measures that are important to that community. 

• People from the community can also advise on how the proposed methods would work best in order for people in that community to take part, helping to improve the rate and diversity of recruitment. 

• Co-designing materials can also help to make sure they are accessible and engaging for potential participants from that community. 

• People from the community can also co-design or advise on recruitment strategies that are more likely to be effective. 

• Community engagement also creates more buy-in to the research for members of that community if they have been involved in the design. 

Development of the grant proposal 

• Working with community partners in the development of a grant proposal can help to address potential power imbalances in any research projects done together, by ensuring they are properly resourced in the grant application and named as co-applicants, where relevant.

• It can also help to ensure that the research and proposed methods in the grant proposal are ethical, and that opportunities to involve members of the community are sufficiently incorporated into the grant proposal.

• Processes such as participatory budgeting can help communities that are impacted by the research make decisions about how proposed funding is designed and allocated. This can also be used by research funding committees and organisations to hand over decision making power about which research projects are funded. 

Recruitment and conducting research 

• Recruitment and research methods are informed by what works for the community, making it better tailored to their needs and interests. As well as increasing the likelihood of recruitment and retention, it is also likely to help improve participants’ experience during the study, increasing the likelihood that they would consider taking part in research again in future. 

• Community engagement can also allow for better involvement of people from under-served groups in research delivery. For example, you could work with members of a community as co-researchers, or in an advisory capacity. By doing so, this can also improve recruitment, as the research is co-led by people from the community, improving trust in the process. This can help to redress power imbalances within research. 

Analysis and interpreting 

• Community engagement can help to improve analysis and interpretation of data by improving our understanding of a community, their needs, behaviours, and interests. 

• This can add a richer perspective to the research data, including by involving the community in the analysis and sharing their interpretations. 

Dissemination 

• Research participants often report that they do not get to hear about the results of the research they have taken part in or been involved in. By working with communities and building links with organisations/individuals who have strong networks in the community, we can avoid this. 

• We can work with community partners to design a strategy for disseminating the results of research that affects these communities, and do so in a way that is tailored and appropriate to that community. 

• It may also open up opportunities to share the findings of our research with others, for example, Local Authorities or service providers, that the community has existing links with, expanding the potential impact and reach of our research. 

Implementation - research into practice 

• Community engagement increases the likelihood that results of research are implemented by adding validity to the findings, and ensuring they can be applied in practice within under-served communities. 

• Working with communities could help implementation in practice by developing information for new services or interventions that are engaging and tailored to the right audience. 

• Similarly, community partners could work with you to develop and deliver training or training manuals for health professionals, or help to influence policy makers and key agencies. 

Evaluation 

• Community engagement can help with evaluating the research process from the perspective of under-served communities, helping to understand what worked, and what could be done differently to make the research more inclusive and collaborative next time. 

• It can also help to inform what might be needed next from research from the perspective of the community e.g priority research topics and questions.