Assessing the impact of public involvement: The MS Society Research Network

2014 Conference

Abstract: It is widely assumed that public involvement provides many benefits to research; however, there is limited systematic analysis of impact, and ongoing debate about what we mean by the term. This poster outlines the process of defining “impact” within the MS Society Research Network (RN), and the subsequent development of questionnaires to gather information about the impact of public involvement in research. It also presents data from nine months of questionnaire use.

The MS Society set up the RN in 2002 and it currently has over 300 members from throughout the UK who are affected by MS. A Public Involvement Officer (PIO) runs the network on a day-to-day basis, and with the RN steering group developed this work around recording and assessing impact. Starting in November 2013 work began with members of the RN to define what was meant by measuring impact. Following this a team of RN members and the PIO developed questionnaires for researchers and RN members to complete after each involvement activity. Data collection started in February 2014.

This work raises questions around how to define and measure impact, what weighting of quantitative and qualitative information can or should be gathered, and how we can better understand the experience of involvement. In addition this work was an involvement activity itself and can be evaluated as a template for future work around measuring impact.

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