Beginning with the end in mind: active user involvement in the research process Sarah Buckland Director INVOLVE JSWEC Cambridge, July 2008

Plan for the workshop INVOLVE Why public involvement is important How people are getting involved in research Your experiences of involvement Challenges for involvement Overcoming challenges JSWEC Cambridge, July 2008

National advisory group. Funded by the Department of Health, since 1996 Promotes active involvement of the public in NHS, public health and social care research JSWEC Cambridge, July 2008 INVOLVE

What do we mean by active involvement in the research process? Public - eg service users, carers, patients Research carried out ‘with’ or ‘by’ the public rather than ‘to’, ‘about’ or ‘for’ Consultation – Collaboration – User controlled JSWEC Cambridge, July 2008

Influencing policy and practice Increasing awareness and sharing experiences of others - website - newsletters - databases Giving advice and guidance - publications - enquiries Improving understanding of extent, nature and effects of involvement Role of INVOLVE

Influencing practice Improving relevance of research Improving quality of research design, methods and findings Assisting in dissemination of research JSWEC Cambridge, July 2008 Value of public involvement

IMPLEMENTATION IDENTIFYING & PRIORITISING TOPICS DESIGNING & MANAGING ANALYSING & INTERPRETING COMMISSIONING UNDERTAKING RESEARCH DISSEMINATION MONITORING & EVALUATION research cycle I NVOLVE November 2004

As a researcher involving service users in your work As a service user or carer getting involved in research JSWEC Cambridge, July 2008 Experiences of involvement

For researchers involving the public For service users and carers getting involved in research JSWEC Cambridge, July 2008 What are the challenges for public involvement in research

JSWEC Cambridge, July 2008 Overcoming the challenges to involvement

Sarah Buckland Director INVOLVE