Impact and Patient Involvement – what’s fair?

We all know public and patient involvement (PPI) is fundamentally important to health research, but what does it mean for impact? How does it challenge our simple definitions of impact? And how can we most meaningfully articulate the benefits of patient involvement in driving real world benefits?

Yesterday I attended a fantastic first meeting of the NIHR Working Group on Public Involvement and Engagement Impact. This group, convened and led by Simon Denegri (@SDenegri), is tasked with unpicking these and further issues around the PPI-impact link. Consisting of a wonderful assembly of PPI leads, impact people, Department of Health strategists and – most importantly – patient representatives, the working group is a space to challenge, agree, disagree, champion and have those vital lightbulb moments only possible through shared learning.

The working group leadership will draw together the broad and energetic discussions into some coherent summaries(!), but ahead of that, I think it’s fair to say:

  • There is HUGE commitment to meaningful patient involvement, and excellent work going on across the country to strengthen how this is done in practice
  • There is an undoubted challenge in knitting this together with the ‘impact agenda’ within the research sector, and a need to avoid simplifying PPI as just a pathway towards something measurable. PPI does something far more, has effects which are far less ‘tangible’, and cannot be decoupled from the value to patient, researcher and research alike.
  • Ultimately there is a moral and ethical right for patients (and their carers) to have their voice heard in research which affects them. We cannot and should not dilute their voice and instead need to look to our research processes to see where we can improve this relationship.

Where that gets us for impact remains to be seen. But I’m definitely looking forward to working it out.

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