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Public Involvement in Research: Results of a Local Scoping Study

Public Involvement in Research: Results of a Local Scoping Study

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Public Involvement in Research: Results of a Local Scoping Study

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

  2. 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

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

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

  5. 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

  6. 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

  7. 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

  8. 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

  9. 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

  10. 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 ...

  11. 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