18 Nov 2021

The topic for this seminar was ‘Participatory and community-based approaches to tackle health inequalities.’ The seminar was chaired by Ranjeet Kaile, director of communications, stakeholder engagement and public affairs at South London and Maudsley NHS Foundation Trust (SLaM).

In his introduction, Ranjeet said the seminar connected with the key themes from SLAM’s new five-year strategy, especially working closely with local communities to address health inequalities and actively tackling systemic racism.

The event began with a presentation from members of ARC South London’s Public Research Panel, which outlined how the panel is seeking to build an approach to applied research and practice grounded in diverse local communities and using participatory research methods.

Dr Josephine Ocloo, senior researcher, King’s College London and equity, diversity and inclusion lead at ARC South London, described the panel’s aims and its origins in an ARC community event to discuss Covid-19 and its impact on people with protected characteristics.

Discussing participatory research, Dr Ocloo outlined a definition that argues that it has always existed wherever marginalised communities have needed to take action to tackle inequalities of power. She also highlighted its importance now, given the context of the pandemic, the Black Lives Matter campaign and critiques around patient and public involvement (PPI) in research.

There were then contributions from two members of the Public Research Panel, Rachael Buabeng, and Leah Bedward, who together highlighted why we need a participatory and community-based approach and the importance of engaging with grassroots groups, amplifying the voices of Black and minoritised communities, and ensuring that inclusion in health research is meaningful.

The presentation also included a powerful short film introducing the ARC’s Public Research Panel: who they are and what drives their involvement in health and social care research.

There’s so many people with so much expertise out of 'the room' who don’t have the chance to shape research to improve health

Dr Josephine Ocloo

The second presentation from Dr Abigail Easter, Agnes Agyepong and Mary Newburn, explored the ARC maternity and perinatal mental health theme’s approach to involving diverse communities in maternity research, including insights and learning from a co-produced training event.

Agnes Agyepong, maternal health advocate and head of engagement at Best Beginnings, spoke about the urgency of addressing the exclusion of Black women’s experiences and voices in maternity research. She invited attendees to reflect on how they could all play a role in bringing about change.

Mary Newburn, patient and public involvement and engagement lead for the maternity theme, then discussed a new report published by the research team on how to be more effective in involving diverse communities in maternity research.

After a wider group discussion, there were breakout sessions exploring practical actions we can all take to support participatory ways of collaborating in research and developing health and social care services.

Practical recommendations to support community-based approaches to research included:

  • Ensure communities and patients are involved from the earliest stages of research
  • Approach service users before a clear plan for research is in place. This will help to develop a culture where research is informed by service users’ experiences
  • Train researchers in cultural safety, competency and equality, diversity and inclusion (EDI) principles and recruit researchers from diverse backgrounds which reflect the local community
  • Fund more dedicated roles to support community-based engagement in research
  • Involve marginalised communities by holding meetings and events at a wider variety of venues, including local mosques, churches, synagogues or community centres
  • Support inclusive online engagement, but don’t overlook importance of face-to-face meetings
  • Engage with local authority social care and primary care contacts, service users’ groups, and community champions to ensure marginalised voices in research are amplified.

Read a summary of the discussion in the breakout groups and recommendations.

Amazing insight into participatory and community-based research approaches from the webinar tonight #InsideResearch we must do more to diversify and democratise research, great practical session so thank you all @MaryNewburn1 @joocloo

Becky Barron (@beckybarron86 on Twitter), attendee