Participating in research and public involvement is an unusual concept for many people and you ned a variety of materials such as leaflets, videos, examples, stories. It takes a little time and repeition to explain it clealry. This is why we use the East of England Citizens' Senate Co-production Experience using real-life examples that are important to them to demonstrate what it means to work collaboratively to co-produce a better outcome.
Your community connectors may not be from within the diverse communities themselves and they and a prospective community champion may not be conversant with participation in research and co-producton principl;es. They will need to be educated.
Individuals were excited about improving health and social care and this enthusiasm needs to be maintained. This requires a number of involvement activities/training from the time of recruitment until a project starts. We have created a suggested ‘Involvement Journey’, a structured pathway to develop skills, maintain enthusiasm and access support.
All sessions must be tailored to the accessibility requirements of the participants including spreading the timings over multiple days.
The following guidance provides a suggested approach to obtaining access to diverse communities via community connectors/champions within your target location. It has been developed through experience within the Hertfordshire and West Essex Integrated Care System and may not directly reflect other integrated care systems.
- Define through co-production with experts by experience the research outcome.
- Agree through co-production with experts by experience the required cohort(s) of participants.
- Clearly define any diverse characteristics/communities required.
- Contact East of England Regional Research Development Network for any guidance/contacts within your targeted location and cohort.
- For each Integrated Care System / Integrated Care Board within your targeted location, contact the Communications Team regarding any health inequalities initiatives such as the Research Engagement Network Programme, Patient Engagement Forums, Voluntary, Community, Faith and Social Enterprise (VCFSE) Alliances or Communities of Practice. The distribution lists of communities of practice provide some interesting organisations and contacts.
- For each local authority in your targeted location access staff involved in community mapping particularly for minority communities and any co-production activity or boards.
- Connect with the Community Voluntary Services (CVS) regarding any initiatives/programmes to support your cohort.
- For specific health conditions you can contact local and national support groups including carer groups for support groups in the targeted location. Health providers do have research departments and these may support you in connecting with clinicians/departments treating specific conditions.
- Search the local authority directories or helplines for community groups that match your required diverse characteristics.
- Search directly for local groups through the internet.
- Attend local libraries for notices.
- Attend local support groups such as employability and wellbeing clubs.
Ideally for health and/or social care research it would be helpful if the local authorities and health authorities would provide individual contact details, however, this is unusual. You will need to develop connections and trust by attending groups and meeting the people directly. This may take some time and require providing information of interest and inviting the individuals directly to participate and offer you their contact details.
Recommendation
Community groups to be trained in co-production and to promote themselves as a source of lived experience for research and other involvement activities.
- Survey of Community Connectors/Champions
- Connect with communities
- Deliver a Co-production Experience to Community Connectors
- Deliver Co-production Experience Taster to each Community
- Deliver Co-production Experience to each Community
- Encourage communities to promote themselves as a lived experience voice for research and other involvement activities.
- Register opportunities for involvement.
- Provide mentoring support.
The East of England Citizens’ Senate acknowledges the Department of Health and Social Care’s financial support. The views and opinions presented do not necessarily reflect those of the Department of Health and Social Care.