Public Involvement in Research: Results of a Local Scoping Study Rosie Davies & David Evans UWE Bristol – on behalf of 14 Research Organisations

Background A range of examples of involvement in research in Bristol/South West No regional/local coordination or collaborative structure Limited resource for involvement in any one organisation Risk of duplication and missed opportunities to learn from good practice

Scoping Study Stakeholders Four NHS trusts Seven NIHR research networks South West Research Design Service University of Bristol and UWE Bristol

Aims Identify and describe existing public involvement in research Share learning on current systems and good practice Identify areas for future coordination and collaboration

Methods Participatory exercise Stakeholder advisory group Involvement of service user ‘research partners’ Map participating institutions, research groups and projects Interviews Process to identify and agree options for collaboration

Examples of Public Involvement in Research Impact of involvement on research –Academic Rheumatology Unit Involving seldom heard groups –Domestic Violence Programme Grant Involvement throughout the research process – Norah Fry Research Unit Involvement in research prioritisation - Peninsula Stroke Research Network Involving children and young people – Centre for Child & Adolescent Health

Current Systems and Practices Few stakeholders have institution-wide approaches Variety of practice on payment and lack of advice on payment/benefits issues Little training for researchers or research partners available Lack of collaboration in training provision Lack of clarity on appropriate support roles/duty of care to research partners Standalone databases

Key Issues and Challenges for Public Involvement in Research Need for early involvement in study planning and design Lack of organisational systems: –Recruit research partners –Support and training –Monitor extent or impact of involvement Difficulty of changing culture/scepticism about benefits

Key Issues and Challenges for Collaborative Approaches Limited capacity to support involvement Duplication of effort and lack of sharing of information Differing organisational priorities and geographical coverage Involvement activity developed independently by researchers

Stakeholders’ Proposed Solutions Shared resource to support planning and recruitment, etc at study level Shared strategic resource to support involvement, including web-based guidance Creation of a network for learning and mutual support Shared information, training, databases, policies...

Next Steps Draft report – in production! Open event to disseminate findings and prioritise options – April 2010 Final stakeholder meeting to agree preferred options for future collaboration – May 2010