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Taking patient and public involvement online: Qualitative evaluation of an online forum for palliative care and rehabilitation research

Brighton, Lisa Jane; Pask, Sophie; Benalia, Hamid; Bailey, Sylvia; Sumerfield, Marion; Witt, Jana; de Wolf-Linder, Susanne; Etkind, Simon Noah; Murtagh, Fliss E.M.; Koffman, Jonathan; Evans, Catherine J.


Lisa Jane Brighton

Sophie Pask

Hamid Benalia

Sylvia Bailey

Marion Sumerfield

Jana Witt

Susanne de Wolf-Linder

Simon Noah Etkind

Jonathan Koffman

Catherine J. Evans


Patient and public involvement (PPI) in research is increasingly recognised as important. Most PPI activities take place face-to-face, yet this can be difficult for people with ill health or caring responsibilities, and may exclude people from hard-to-reach populations (e.g. living in vulnerable social circumstances and/or remote geographical locations). These challenges are particularly pertinent in palliative care and rehabilitation research where people often live with, or care for someone with, advanced illness. In response to this, we aimed to test the functionality, feasibility, and acceptability of an online forum for PPI for palliative care and rehabilitation research (

We conducted separate focus groups with PPI members and researchers who had used the online forum. Data collection was underpinned by DeLone and Mclean’s model of information systems success. Focus groups were recorded, transcribed, and analysed using inductive thematic analysis. Dual coding by two authors ensured rigour, and attention was paid to divergent cases.

Four PPI members and five researchers participated in the focus groups (two PPI focus groups, one researcher focus group). The online forum was perceived as functional, feasible, and acceptable. Our analysis 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? PPI members felt that the online forum was too researcher led, and needed to be more PPI focussed.

When developing online methods of PPI, a functioning forum is not enough: it also needs to be engaging and empowering to have an impact. To optimise online involvement, future work should refer to these four domains and balance the needs of researchers and PPI members.


Brighton, L. J., Pask, S., Benalia, H., Bailey, S., Sumerfield, M., Witt, J., …Evans, C. J. (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), Article 14.

Journal Article Type Article
Acceptance Date Mar 22, 2018
Online Publication Date May 1, 2018
Publication Date May 1, 2018
Deposit Date May 1, 2018
Publicly Available Date May 2, 2018
Journal Research Involvement and Engagement
Print ISSN 2056-7529
Electronic ISSN 2056-7529
Publisher Springer Verlag
Peer Reviewed Peer Reviewed
Volume 4
Issue 1
Article Number 14
Keywords Patient participation; Patient engagement; Online systems; Palliative care; Rehabilitation; Patient and public involvement; Service user involvement; Online forum
Public URL
Publisher URL


Article (1.4 Mb)

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This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (, which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( applies to the data made available in this article, unless otherwise stated.

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