Kent, Surrey and Sussex NIHR partners working together with communities to address barriers to engagement, involvement and participation in research by ethnic minorities
The COVID-19 pandemic has highlighted that people from ethnic minority communities are not as engaged with health and care research as some populations and are included at rates far lower than would be expected, given their share of the population and the disease burden. It is important that health and care research reflects the needs of all local communities across Kent, Surrey and Sussex (KSS) and that there is equity of access to opportunities to impact research through engagement, involvement and participation.
Since mid-2020, National Institute for Health and Care Research (NIHR) partners in the south east of England - Clinical Research Network (CRN) Kent, Surrey and Sussex, Research Design Service (RDS) South East and Applied Research Collaboration (ARC) Kent, Surrey and Sussex have been building relationships with organisations from the Black ethnic group as a whole and the Asian ethnic group as a whole across Kent, Surrey and Sussex. Regular meetings with representatives from community groups led to the development of an online ‘Reaching Out’ event in June 2021. The event took place with funding from NIHR Centre for Engagement and Dissemination (CED).
Individuals from community groups, researchers and NIHR organisations from Kent, Surrey and Sussex came together to explore the barriers to ethnic minority group involvement in research and to consider what could be done to address these through partnership working.
This project was an opportunity to capture what needs to change at both a local and national level; to ensure an ongoing partnership between NIHR and the public, which NIHR partners believe is the foundation stone for ensuring greater representation and involvement in research and ensuring that research activity reflects the needs of all. The intention is to co-produce a way forward for the partnership, including defining the purpose of the partnership and activities that could be undertaken within this partnership.
Findings of the event
The report was written by a member of the public from the established ethnic minorities group, along with members of the Reaching Out steering group. Some of the themes were: Powerlessness of the ‘researched’; problematic framing of ethnic minority people; research fatigue; and what is the role of community connectors/partners.
Reaching Out demonstrated a demand, from both communities and researchers, to establish a sustainable regional Forum with a view to increasing the involvement and participation of minority communities in research, co-led by ethnic minority groups and NIHR organisations. Resourced by further funding from NIHR CED, NIHR partners and communities will co-design the forum through a series of workshops.
The Reaching Out event identified three potential models for the Forum:
1. A ‘reactive’ model: researchers accessing the group for feedback and participation
2. An ‘active’ model: influencing the research priorities of researchers in the region, co-developing proposals, training/mentoring/buddying
3. A hybrid model of both approaches
These options were taken back to attendees of the Reaching Out event and through collective consideration of the report, and a poll on its recommendations, a clear way forward for this work was decided. These are:
1. Development of the forum into a true partnership of researchers and community organisations
2. Development of an engagement charter
3. Training: for researchers and for community organisations, with the potential for a buddying system.
The report was written by Dr Anusree Biswas Sasidharan and Dr Gary Hickey.
If you would like more information about the Reaching Out work please email CRN Kent, Surrey and Sussex firstname.lastname@example.org.