!–– Cookie Warning ––>
Inclusive community engagement means more than ‘involving’ individuals and representatives as members of research steering groups and advisory groups. It is about planning research in the community, and with the community the research seeks to benefit. It seeks to include people with diverse experiences and perspectives who may have unmet needs that and not yet have been represented in research priority setting, decision making or planning. Whilst individual relationships are important, the emphasis is upon building alliances with wider communities. There needs to be commitment from the outset to build collaborative and mutually beneficial research partnerships which extend beyond individual projects. It is about engaging early and investing in agreeing mutually beneficial outcomes to support the project and beyond.
“Community engagement, in this context, goes beyond simply ‘involving’ people. It relies on building ongoing, meaningful relationships between the community and organisations for mutually beneficial outcomes. It is a collaborative process between groups who are brought together as neighbours or through sharing a common interest or concern. It is a powerful vehicle for bringing about environmental and behavioural changes to improve the situation and wellbeing of the community”.
In early 2021, the NIHR Centre for Engagement and Dissemination invited us to apply for funding to further develop and promote the learning from the Reaching Out Project. Together with the East of England NIHR Public Involvement Collaborative we recorded a series of informal zoom conversations with some of the community partners across our region who have been involved in various research activities. Community leaders share their experiences of research and discuss the issues that matter to the diverse communities they support. They share the wealth of experience and knowledge they have within the community sector and reflect upon the devastating impacts of COVID-19 and subsequent restrictions which could not have been prepared for. They explain how they have adapted their support and found new and innovative ways to engage with some of the most vulnerable members of our society.
One of the most important and challenging aspects of community focussed research is to find the relevant people who your research seeks to benefit. This takes time and involves reaching out and meeting up with people who may have an interest in the topic of the research. This calls for particular in-depth consideration if you are wanting to address health inequalities by engaging people who have been under represented in research. Communities are incredibly complex and it takes imagination and tenacity to seek out diverse groups who may meet physically or virtually in the least obvious places. We can help you find and broker introductions with many different communities with whom we may have established relationships or that we know of through our local, regional and national networks. We can also provide expertise and advice about ways to engage and design collaborative and equitable research partnerships. The earlier you address this the better and we are available to chat with you informally about your ideas and listen to any potential uncertainties. There is no right or wrong way to do this and we are learning ourselves but we do have a lot of experience and we are very happy to share (see NIHR Reaching Out Project for some examples of how ‘messy’ and yet ‘fun’ this way of working can be).
This toolkit is aimed at supporting researchers who are developing grant applications with, and for, diverse communities. It has evolved from what our community partners in the Reaching Out Projects taught us about how they would like researchers to engage with them to build sustainable community relationships. We have transferred their knowledge and experience to the world of health and social care research into ten guiding principles.
1. Do the groundwork and prepare
2. Find trusted community workers/leaders who can help broker introductions with wider communities
3. Respect the vast knowledge and experience of community workers/leaders and ask them to help shape the project
4. Be honest about the scope and resources and don’t over promise. Agree ways of working and core values.
5. Be flexible about where and when you arrange meetings
6. Be generous, build in reciprocity and impact beyond your specific project needs
7. Invest time, genuine relationships take commitment and time to develop trust
8. Be creative and innovative about different ways to work and collaborate
9. Listen attentively and engage fully with the needs and priorities which the community share
10. Be responsive, communicate regularly, feedback any outcomes, and say thank you
Finally, be authentic by connecting person to person and trust the process by embracing challenges and conflicts that may arise – this is often where the magic happens!
Useful resources – Please find a selection of useful resources below
Toolkit for increasing participation of Black Asian and Minority Ethnic (BAME) Groups in health and social care research
ScienceTech Public Engagement Framework
NIHR Community Engagement Involvement Resource Guide 2019
NIHR CRN INCLUDE Guidance July 2020
NIHR CRN INCLUDE Summary July 2020
Bromley by Bow Centre – Happiness and the House of Dreams
European Citizen Science Association ten principles of citizen science
NIHR INVOLVE – Being Inclusive in Health Research
Unicef – Minimum Quality Standards for Community Engagement
Unicef – Minimum Quality Report
|Empowering meaningful community engagement and involvement in global health research
Community engagement and involvement (CEI) is both a mandate and a core value for NIHR global health research. With that in mind, our latest CEI learning resource, developed in partnership with the Institute of Development Studies, offers a brief set of reflections to help guide decision-making within the context of collaborative research approaches.
Community Partnership Projects
University of Essex Reaching Out Project – NIHR funded https://rds-eoe.nihr.ac.uk/public-involvement/nihr-reaching-out-project/
University of Essex COURAGE network – UKRI funded https://www.gazette-news.co.uk/news/18263243.innovative-project-launched-exploring-lives-neurological-conditions/
University of Hertfordshire Stevenage Play Centres Project – UKRI funded IIRP03 Stevenage playcentres project: Improving health and wellbeing of children | ARC east of England (nihr.ac.uk)