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Taking patient and public involvement online

New research explores what it takes for online patient and public involvement to work:

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Patient and public involvement (PPI) is increasingly recognized as important in research. Most involvement takes place face-to-face, but this sometimes can be difficult for people who are unwell or have caring responsibilities.

In response to these challenges, which are particularly common in palliative care and rehabilitation research, a team at the Cicely Saunders Institute at King’s College London developed an online forum for PPI:

Their recent study, published in BMC Research Involvement and Engagement, explored how well the online forum worked, whether it was a suitable method for PPI, and how PPI members and researchers reacted to using it. To do this, they conducted a qualitative focus group study with PPI members and researchers who have used the forum so far. To ensure comprehensiveness, Data collection was underpinned by DeLone and Mclean’s (2003) model of information systems success. Throughout this evaluation, PPI members helped with the focus group questions, analysis, and write up.

From the results of the focus groups, the team identified four key questions to consider when developing online methods for PPI: (1) How does the forum work?  (2) How does it engage people? (3) How does it empower people? and (4) What is the impact?

The main message from their work is that to develop online methods of PPI, a functioning forum is not enough: it also needs to be engaging and empowering to have an impact. Overall, the online forum team felt that the forum showed good promise as a method of PPI in palliative care and rehabilitation research, alongside other methods of involvement. Future work on their online forum will be carried out to address the comments from the evaluation.

Read the full paper: Brighton LJ, Pask S, Benalia H, et al. (2018). Taking patient and public involvement online: qualitative evaluation of an online forum for palliative care and rehabilitation research. Research Involvement and Engagement. 4 (1): 14.    

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