Taking patient and public involvement online: qualitative evaluation of an online forum for palliative care and rehabilitation research
Plain English summary Patient and public involvement (PPI) is increasingly recognised as important in research. Most PPI takes place face-to-face, but this can be difficult for people who are unwell or have caring responsibilities. As these challenges are particularly common in palliative care and r...
| Main Authors: | , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2018-05-01
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| Series: | Research Involvement and Engagement |
| Subjects: | |
| Online Access: | http://link.springer.com/article/10.1186/s40900-018-0097-z |
| _version_ | 1828782238701977600 |
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| author | Lisa Jane Brighton Sophie Pask Hamid Benalia Sylvia Bailey Marion Sumerfield Jana Witt Susanne de Wolf-Linder Simon Noah Etkind Fliss E. M. Murtagh Jonathan Koffman Catherine J. Evans |
| author_facet | Lisa Jane Brighton Sophie Pask Hamid Benalia Sylvia Bailey Marion Sumerfield Jana Witt Susanne de Wolf-Linder Simon Noah Etkind Fliss E. M. Murtagh Jonathan Koffman Catherine J. Evans |
| author_sort | Lisa Jane Brighton |
| collection | DOAJ |
| description | Plain English summary Patient and public involvement (PPI) is increasingly recognised as important in research. Most PPI takes place face-to-face, but this can be difficult for people who are unwell or have caring responsibilities. As these challenges are particularly common in palliative care and rehabilitation research, we developed an online forum for PPI: www.csipublicinvolvement.co.uk. In this study, we explored how well the online forum worked, if it is a suitable method for PPI, and how PPI members and researchers reacted to using it. We used an existing theory about online interventions to help choose the ‘right’ questions to ask participants. We invited PPI members and researchers who had used the online forum to participate in focus groups, and identified the most important themes discussed. Within this study, PPI members have helped with the interview questions, analysis, and write up. Overall, four PPI members and five researchers participated in the focus groups. Participants felt the online forum worked well and had multiple benefits. From the discussions, we identified four key questions to consider when developing online methods for PPI: how does the forum work, how does it engage people, how does it empower people, and what is the impact? Participants suggested the forum could be improved by being more PPI and less researcher focused. We conclude that when developing online methods of PPI, a functioning forum is not enough: it also needs to be engaging and empowering to have an impact. Future work can use these four domains when developing their own online PPI methods. Abstract Background 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 (www.csipublicinvolvement.co.uk). Methods 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. Results 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. Conclusions 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. |
| first_indexed | 2024-12-11T17:45:48Z |
| format | Article |
| id | doaj.art-970201a5560540f7aebd5442a155fa4d |
| institution | Directory Open Access Journal |
| issn | 2056-7529 |
| language | English |
| last_indexed | 2024-12-11T17:45:48Z |
| publishDate | 2018-05-01 |
| publisher | BMC |
| record_format | Article |
| series | Research Involvement and Engagement |
| spelling | doaj.art-970201a5560540f7aebd5442a155fa4d2022-12-22T00:56:22ZengBMCResearch Involvement and Engagement2056-75292018-05-014111210.1186/s40900-018-0097-zTaking patient and public involvement online: qualitative evaluation of an online forum for palliative care and rehabilitation researchLisa Jane Brighton0Sophie Pask1Hamid Benalia2Sylvia Bailey3Marion Sumerfield4Jana Witt5Susanne de Wolf-Linder6Simon Noah Etkind7Fliss E. M. Murtagh8Jonathan Koffman9Catherine J. Evans10Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College LondonCicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College LondonCicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College LondonPatient/Carer Representative, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College LondonPatient/Carer Representative, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College LondonCancer Research UKCicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College LondonCicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College LondonCicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College LondonCicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College LondonCicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College LondonPlain English summary Patient and public involvement (PPI) is increasingly recognised as important in research. Most PPI takes place face-to-face, but this can be difficult for people who are unwell or have caring responsibilities. As these challenges are particularly common in palliative care and rehabilitation research, we developed an online forum for PPI: www.csipublicinvolvement.co.uk. In this study, we explored how well the online forum worked, if it is a suitable method for PPI, and how PPI members and researchers reacted to using it. We used an existing theory about online interventions to help choose the ‘right’ questions to ask participants. We invited PPI members and researchers who had used the online forum to participate in focus groups, and identified the most important themes discussed. Within this study, PPI members have helped with the interview questions, analysis, and write up. Overall, four PPI members and five researchers participated in the focus groups. Participants felt the online forum worked well and had multiple benefits. From the discussions, we identified four key questions to consider when developing online methods for PPI: how does the forum work, how does it engage people, how does it empower people, and what is the impact? Participants suggested the forum could be improved by being more PPI and less researcher focused. We conclude that when developing online methods of PPI, a functioning forum is not enough: it also needs to be engaging and empowering to have an impact. Future work can use these four domains when developing their own online PPI methods. Abstract Background 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 (www.csipublicinvolvement.co.uk). Methods 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. Results 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. Conclusions 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.http://link.springer.com/article/10.1186/s40900-018-0097-zPatient participationPatient engagementOnline systemsPalliative careRehabilitationPatient and public involvement |
| spellingShingle | Lisa Jane Brighton Sophie Pask Hamid Benalia Sylvia Bailey Marion Sumerfield Jana Witt Susanne de Wolf-Linder Simon Noah Etkind Fliss E. M. Murtagh Jonathan Koffman Catherine J. Evans Taking patient and public involvement online: qualitative evaluation of an online forum for palliative care and rehabilitation research Research Involvement and Engagement Patient participation Patient engagement Online systems Palliative care Rehabilitation Patient and public involvement |
| title | Taking patient and public involvement online: qualitative evaluation of an online forum for palliative care and rehabilitation research |
| title_full | Taking patient and public involvement online: qualitative evaluation of an online forum for palliative care and rehabilitation research |
| title_fullStr | Taking patient and public involvement online: qualitative evaluation of an online forum for palliative care and rehabilitation research |
| title_full_unstemmed | Taking patient and public involvement online: qualitative evaluation of an online forum for palliative care and rehabilitation research |
| title_short | Taking patient and public involvement online: qualitative evaluation of an online forum for palliative care and rehabilitation research |
| title_sort | taking patient and public involvement online qualitative evaluation of an online forum for palliative care and rehabilitation research |
| topic | Patient participation Patient engagement Online systems Palliative care Rehabilitation Patient and public involvement |
| url | http://link.springer.com/article/10.1186/s40900-018-0097-z |
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