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Taking patient and public involvement online

Author: Lisa Brighton, Sophie Pask and Catherine Evans, on behalf of the Cicely Saunders Institute Patient and Public Involvement Strategy group
14 May 2018

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

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? Important components of a working forum included having key interactive features (e.g. the ability to start discussions and post responses), on a secure platform, which was clearly organized and signposted.
  2. How does it engage people? Participants noted the importance of the online forum having a clear purpose, with an appearance and language that were both engaging. They noted the need to build a body of forum users in order to gain more momentum in activity, and the importance of good publicizing in order to achieve this.
  3. How does it empower people? Both PPI members and researchers felt that clear and encouraging communication on the online forum was needed to support people to contribute. In addition, the people needed to feel they could relate to and belong in the online forum. These characteristics, in combination with adequate training and guidance, were crucial in empowering people to get involved.
  4. What is the impact? Those using the forum felt that it improved their confidence in PPI, and had the potential to be more inclusive to some groups (although acknowledged it could be a barrier to those who are not computer literate or do not have access to an appropriate device). They felt it was a good way of giving and receiving feedback, and keeping up to date with research and events at the Institute. For PPI members in particular, it was also a way of sharing experiences in a way that they could contribute to research.

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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