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In this blog, ARC NENC Public Involvement and Community Engagement Manager, Felicity Shenton shares some ideas on how to find and reach out to public, patient and community groups who you might want to involve in your research project.

Public Involvement and Community Engagement (PICE) – where do you start?

If you’re at the start of your research project, and want to find members of the public, patients, service users and carers who might get involved in your project, it’s sometimes hard to know where to begin.

Before you start to approach people or groups, you might want to think about:

• What is the area of research?
• Who are your stakeholders? Who will be the end user for the research? Who are you hoping to make an impact upon?
• Are issues around age, gender, ethnicity, geography, clinical condition, service area important?
• Do you have a specific area of research focus? This will determine who you want to involve in your research.
• Are there any barriers to involvement, for example issues around communication, access, financial barriers etc.
• Have you considered issues around support and training for public contributors, including remuneration for their involvement  – you can find more advice here: Payment guidance for researchers and professionals (nihr.ac.uk)

Once you are clear who you want to have working alongside your research team, you need to consider who to approach to offer opportunities for involvement.

• Local and regional VCSE (Voluntary, Community and Social Enterprise) organisations work with and provide services for diverse and under-served people and communities. There are regional organisations such as VONNE, Cumbria CVS, Cumbria Community Foundation, County Durham Community Foundation or try approaching a local group to offer opportunities for involvement.
• Many local, regional and national charities provide advice and support for people living with specific conditions. Try to identify any appropriate local groups.
• There are also specific groups set up to represent specific communities, including refugees & asylum seekers, learning disabled people, mental health service users groups.
• Community Centres are also often a good place to start a conversation as they may have a number of different groups using their facilities.
• To approach young people there are a number of regional organisations (Investing in Children, Youth Focus North East, North East Youth, Children North East, Cumbria Youth Alliance) as well as local groups e.g. YMCA, Streetwise, West Cumbria Youth Projects etc. You could also approach local schools or colleges.
• Every Local Authority has a Healthwatch project which provides a voice for people using health & social care services. Healthwatch | Your spotlight on health and social care services. Many have access to diverse community groups, volunteers and service user groups.
• Clinical Commissioning Group and Integrated Care Partnerships have service user and patient representation groups
• Most GP practices have Patient Participation Groups
• Large NHS Trusts have servicer user and carer involvement groups including CNTW, TEWV, NUTH
• Most Local Authorities have service user and citizen parliament or experts by experience groups. Many also run Children in Care Councils and Youth Councils.
• The Research Design Service (RDS) and Clinical Research Network (CRN) also have contacts with a number of community organisations, service user groups.

You might also find the training session below, helpful.

‘How to identify, approach and engage with patients and the public’ delivered by the regional Creating Connections Network in 2021.

For any additional help and support or advice about who to approach please contact: [email protected]