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

Abstract

Background: Public involvement is increasingly considered a prerequisite for high-quality research. However, involvement in palliative care is impeded by limited evidence on the best approaches for populations affected by life-limiting illness. Aim: To evaluate a strategy for public involvement in palliative care and rehabilitation research, to identify successful approaches and areas for improvement. Design: Co-produced qualitative evaluation using focus groups and interviews. Thematic analysis undertaken by research team comprising public contributors and researchers. Setting/participants: Researchers and public members from a palliative care and rehabilitation research institute, UK. Results: Seven public members and 19 researchers participated. Building and maintaining relationships, taking a flexible approach and finding the ‘right’ people were important for successful public involvement. Relationship building created a safe environment for discussing sensitive topics, although public members felt greater consideration of emotional support was needed. Flexibility supported involvement alongside unpredictable circumstances of chronic and life-limiting illness, and was facilitated by responsive communication, and opportunities for in-person and virtual involvement at a project- and institution-level. However, more opportunities for two-way feedback throughout projects was suggested. Finding the ‘right’ people was crucial given the diverse population served by palliative care, and participants suggested more care needed to be taken to identify public members with experience relevant to specific projects. Conclusion: Within palliative care research, it is important for involvement to focus on building and maintaining relationships, working flexibly, and identifying those with relevant experience. Taking a strategic approach and developing adequate infrastructure and networks can facilitate public involvement within this field.

Opportunities for public involvement in big data research in palliative and end-of-life care

“…11 It has been suggested that this may be because common approaches to public involvement adopted in primary data research are not appropriate within big data analysis studies. 12,13 While public members are commonly involved in primary research to review and develop patient information leaflets or other research materials, undertake interviews with research participants or even support recruitment for a clinical trial, these involvement opportunities are not applicable to big data research. 13,14 In addition, the highly data driven discussions that underline this type of research can present a barrier to public involvement with 'unfamiliar' and 'scientific' language repeatedly being cited as an obstacle, across fields.…”

From artmaking to changemaking: Conceptualizing the PATCH (Palliative care patient-led change) programme

“…Unfortunately, there is a reluctance to involve palliative care patients in such research, perhaps due to a lack of confidence about appropriate approaches for this group. 29 Given the challenges of a life-limiting illness, it may seem unnecessary and impractical to move beyond such initiatives as the palliative and end of life care priority setting partnership, which included patients in identifying and prioritizing gaps in current research evidence. 30 Indeed, palliative care patients are often seen as too sick and having too little energy to contribute meaningfully to more active research practices.…”

Co-design of Guidance for Patient and Public Involvement in Psychedelic Research

“…Various tools have been developed to help support PPI in research; a 2019 systematic review identified and classified 64 frameworks ( 47 ), these were rarely adopted outside the research groups that developed them, showing how a one-size-fits all approach to PPI guidance may not work. While a number of existing frameworks may be used to help inform PPI in psychedelic research ( 8 , 48 – 50 ), none of these account for the unique position which this field of research finds itself, namely: a highly complex socio-political landscape; rapidly changing drug policy; a wealth of knowledge stemming from a long tradition of psychedelic use pre-dating modern research; an underrepresentation of women, Black, Asian, and ethnically diverse populations; the social stigma associated with recreational use; and the 20-year hiatus in psychedelic research. All of these factors are not only important considerations for researchers conducting studies, but also for those taking part, particularly considering the potential for long-term impact on a participant's life ( 51 ).…”