Evidence Library

Abstract:

Aim: This paper describes the experiences of a group of researchers and 'patient research partners' who have collaborated in a series of arthritis research projects. It describes the challenges they faced, outlines a practical model for involvement and lists some outcomes of involvement.

Findings/recommendations: The authors describe 4 main challenges to involvement - access and communication, relationships, tokenism and the anxieties of taking on a new role.

Their solution to these challenges is a model called FIRST. This acronym describes the approach patient research partners and professionals need to adopt if involvement is to be successful: Facilitate (inclusions and contribution), Identify (projects, patients and roles), Respect, Support and Training.

Finally, the authors describe the impact of this involvement on:

• research - for example a fresh insight into issues, novel outcomes and altered study design
• patient research partners - for example improved confidence and being able to give something back
• Professionals - for example greater understanding of rheumatoid arthritis and its impact.

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Related entry: none currently available

Categories: health
Designing research
Analysing and interpreting
impact on research
impact on service users involved
impact on researchers
impact of public involvement
reflecting on public involvement in research
journal article

Date Entered: 2012/03/26

Date Edited: 2012/12/06