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By Rose Watson

Research Assistant at Institute of Health and Society, Newcastle University

 

I heard about this workshop after helping out Bethany Bareham at a training event for PGR students in Newcastle University (read about it here).  I found one of the issues raised in that event with regards to how to engage with a bigger variety of people during PPI activities fascinating. It was not something I had hugely considered before, although I have been involved in PPI activities within various research projects.  I spoke with Susan Hrisos about my interest and she invited me to come along to this event which she was chairing.

 

Diversity is one of those words which seems so obvious until you begin to think about what it encompasses.

 There was a great turn out with a mixture of researchers, PPI Managers and PPI Contributors. We had interesting discussion around what is diversity to open the day. Diversity is one of those words which seems so obvious until you begin to think about what it encompasses. Susan led a great discussion in the morning and we all thought about various dimensions of diversity and what it can mean in terms of PPI engagement.  We identified a variety of characteristics which could be included in a diverse list but also thought about the terminologies of ‘seldom heard’ or ‘hard to reach’.  Some of the difficulties around increasing the diversity of people involved in PPI activities were also noted such as the longstanding issue of reimbursement and the difficulties around this particularly in relation to benefit recipients; research systems and how they could exclude people unintentionally; and issues around funding for PPI activities particularly at the early stages of a project idea. 

After lunch we turned our attentions to creative solutions to some of the issues identified in the morning session.  One of the PPI Contributors commented on the similarities between this and community work which they undertake as part of their job, another pointed us towards some of the pharmaceutical companies who regularly engage with patients and the public as part of their remit. It was felt that a lot of learning could be done from community groups and others in the public sector who regularly engage in community engagement work, such as community centres and the police.  We had a lot of discussion around ‘remote involvement’ and the myriad of ways that could be used and done. We touched on some other topics such as monitoring of diversity within PPI activities, although a note of caution was felt necessary here on the dangers of creating ‘monitoring for the sake of monitoring’ and worries that this make lead to more tokenistic involvement rather than less. 

 

All in all, this is a fascinating area, although more complex than it perhaps appears on the surface.

 

All in all, this is a fascinating area, although more complex than it perhaps appears on the surface. I thoroughly enjoyed the chance to have some dedicated time for discussions with a variety of people and thought the input from the PPI Contributors was particularly insightful. The event has left me thinking about how we as researchers can make PPI activities more accessible and particularly about remote involvement and the different ways this could be useful. 

 

Rose has been invited by her research theme locally to give a brief presentation on the workshop and diversity in PPI in research at their next meeting.

You can read about the other workshop events here, and a public perspective on the 'online recruitment to clinical trials that use electronic health records' workshop here.