Case study: building on Reaching Out with community workshops

How can we develop the capacity of communities for research? And let researchers know about the work happening in community groups? The NIHR Research Design Service South East undertook a series of workshops to try and address these questions.

What’s the issue?

In the South East region, and in part as a result of initial Reaching Out funding, we have established a Forum which consists of people representing various ethnic minority community groups. The work is supported by Research Design Service South East, the Applied Research Collaboration Kent, Surrey and Sussex and Clinical Research Network Kent, Surrey and Sussex.

In the long term the Forum intends to forge relationships with researchers across the region, provide training and mentoring to researchers around their engagement skills and work in partnerships with researchers to deliver research that reflects the needs of different communities. Two objectives of the Forum were:

1. developing the capacities of communities regarding research and raising awareness and knowledge of NIHR; 
2. raising awareness of researchers within the region of the work that the communities themselves were undertaking and the issues that they felt were important.

What did you do?

Three community groups have undertaken five workshops/events. If you’d like further details you can contact the authors for full event reports. A fourth community group is also developing an event.

1. Bridging Change conducted two separate in person workshops in Brighton and Hove, one for organisations who work with racialised communities and another with people who identify as Black, Asian and minoritised ethnic. The workshops sought to improve understanding of how people who identify as Black, Asian and minoritised ethnic people in Brighton and Hove were engaged with by researchers
2. Diversity Resource International (DRI) hosted a “Dragon’s Den Style” workshop to highlight the benefits of community-led research through presentations by DRI-trained community researchers. Commissioners, academics, local community-led organisations, and members of the public interested in community research were invited to the workshop.
3. Ethnic Minorities in Canterbury (EMIC) held two online events. The first event targeted communities and the second focused on researchers. These aimed to:
   • To educate and build interest in ethnic minority communities about research and its importance in developing appropriate services.
   • Identify barriers, at a local level, to engagement, involvement and participation in research and how these might be addressed.
   • To identify best approaches for engagement with ethnic minority communities

What could other people take from this?

Bridging Change

Participants in the workshops were asked a set of questions around their experiences of health research: How they would want to be engaged with; health and social care issues impacting them; what they wanted research to look like, challenges, barriers, benefits and outcomes of working with researchers and what they would like to see in the future. This event identified recommendations for health/social care researchers around engagement. Key findings:

• Certain health issues, especially around mental health, sexual health and cancer required sensitivity and some members of the workshop said that this needed to be dealt with particular consideration and cultural sensitivity.
• Research that involved digital methods had an exclusionary impact for those who had English as a second language and those who experienced digital exclusion.
• There needed to be more involvement with communities and community navigators in the framing of questions to ensure that it captures cohorts’ responses better.
• Also, some racialised people were reverential to clinical staff and there was a nervousness around challenging misdiagnosis or inappropriate comments, especially from doctors.
• It was important that researchers followed up with participants and fed-back the impact of the research or outputs.
• Engagement with communities and community navigators should be built on principles of trust, respect for experts by experience, have timely communication, safe space for conversation, renumeration, flexibility of researchers towards participants, use plain language to make research accessible and value cultural awareness.
• Respondents were keen to work with researchers, but on a much more equal basis. One idea was to look to community researchers to help grow knowledge and use community development skills much more in research so that it could improve access for researchers but also enable a more accurate understanding of ethnic minority people.

Diversity Resource International

This event provided a forum for three community researchers to share their work and so raise the profile of the community researcher work which DRI supports. It was an opportunity for commissioners, academics, local community-led organisations, and members of the public to engage and learn more about these events. The feedback was very positive, and the intention is to provide more such events.

Ethnic Minorities in Canterbury

The key findings from this event were:

• Researchers need to talk and proactively engage with ethnic minority communities and to realise that one size does not fit all.
• Communities too, need to demand to be involved in all research in a meaningful way.
• Innovative methods of engagement are required when engaging with ethnic minority communities as the ones accepted as standard are very impersonal and ignored by many.
• There is a need to plan for a more comprehensive community involvement at the start and in the design of any project.
• We must build and share knowledge gathered as a result of research with appropriate audiences including commissioners.
• Researchers need to avoid a ‘broad brush’ approach to ethnic minority groups i.e., lumping different groups together.

Key outcomes:

• EMIC is currently exploring the possibility of joint activities with Centre for Health Service Studies at University of Kent and also colleagues at University of Surrey.

Are there any resources/outputs?

The first episode of a podcast series ‘Talk In Equality’ is now available on Spotify. In this series we explore, with funders, researchers and community organisations, the role that can be played by health and social care research to help address these inequalities.

We also discuss the importance of engagement and what they are doing to address the lack of representation from minoritised ethnic communities in research in participation and involvement

What’s next?

• Training and presentations:
  • Involvement in an online course, on patient and public involvement and engagement, being developed by the Agora Digital Centre at University of Southampton
  • Developing a podcast series on inequalities in health with a working title – Talk In Equality
  • Presented our work at NIHR Research Inclusion Programme Board
  • Presented our work at an ARC KSS event on ‘co-production.’
  • Presented our work at a cross-NIHR event which aimed to raise awareness of how the NIHR works with communities.
  • Presented our work at ARC KSS Research Week
• Blogs:
  • A blog on our upcoming podcast series Talk In Equality
  • Upcoming blog for the Co-production Collective on how we have co-produced our work.
• Research:
  • Involvement in a NIHR-funded study ‘Pathways to Implementation for Public Engagement in Research.’
  • We intend to bid for an NIHR Project Development Grant to develop the Forum and achieve objectives from Reaching Out