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

Abstract

Plain English summaryPatient 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.AbstractBackgroundPatient 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).MethodsWe 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.ResultsFour 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...

International palliative care research priorities: A systematic review

“…Doing so will help to ensure that future research addresses questions of relevance, helping decision-makers and service providers to be better equipped to design and deliver health services to meet patient/service user need [58]. Whilst researchers have acknowledged the need for greater patient involvement in research and planning [59], their inclusion is questioned by an array of ethical, practical and medical challenges [60], further complicated by researcher concerns about their roles and values [61,62]. Nevertheless, the need to find new robust processes to support meaningful contribution of patients to enable inclusion in strategic directions in palliative care is required to ensure the inequality [2] is reduced and the research is not considered wasteful [35].…”

International Palliative Care Research Priorities: A Systematic Review

“…Doing so will help to ensure that future research addresses questions of relevance, helping decision-makers and service providers to be better equipped to design and deliver health services to meet patient/service user need (58). Whilst researchers have acknowledged the need for greater patient involvement in research and planning (59), their inclusion is questioned by an array of ethical, practical and medical challenges (60), further complicated by researcher concerns about their roles and values (61,62). Nevertheless, the need to find new robust processes to support meaningful contribution of patients to enable inclusion in strategic directions in palliative care is required to ensure the inequality (2) is reduced and the research is not considered wasteful (35).…”

Patient and public involvement in palliative care research: What works, and why? A qualitative evaluation

“…The strategy details a collaborative approach to how public involvement is implemented and evaluated to enhance research productivity, quality and clinical relevance. Alongside the core principles, the strategy commits to key infrastructure to support involvement, including a public involvement coordinator, public involvement training, and an online forum 14 (see Figure 1).…”