Creating a Framework for Increased Accessibility in Palliative Care Research

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A recent study published by the National Library of Medicine has proposed a revised framework for increasing accessibility to palliative care research. Based on findings from interactions with patient and public involvement (PPI) members, the study authors aimed to create a framework that included creating more opportunities for PPI members to be involved in palliative care research and co-designing new resources to promote diversity, equity, and inclusion (DE&I).¹

“There are marked inequalities in palliative care provision,” the authors wrote. “Research is needed to understand how such inequalities can be addressed, so that everyone living with advanced illness can receive the care they need, when they need it. Research into inequalities in palliative care should be guided by PPI that includes people from diverse backgrounds, who are less likely to receive specialist services. Multi-disciplinary research partnerships, bringing together primary care (the main providers of palliative care to diverse communities) and specialist palliative care, have the potential to work together in new ways to do research to address inequalities and improve palliative care in practice.”

According to the National Institute of Health’s National Institute on Aging, palliative care is a specialized form of medical care for those living with serious diseases. It aims to increase the patient’s quality of life by focusing more on them and their family.²

The study authors recruited 16 PPI members via primary care and palliative care research networks from three diverse areas of the United Kingdom. The approach included having the members participate in online workshops, with evaluations being based off impact logs and short surveys.

The PPI members collaborated to create new roles and resources in palliative care research. This included an Equity, Equality, Diversity, and Inclusion Champion role, a “jargon buster,” an animation, and an online recipe book to inform future PPI.

“Workshop participants identified challenges associated with conducting parallel-group [cluster-randomized trials (CRTs)] using established designs, with the predominant problem being expected large loss to follow up in some settings such as care homes and hospices’” the study authors wrote. “This reflected our experiences in the motivating case for this study, the DCM-EPIC CRT. Participants could generally recognise the value of OC designs but posed several questions around if and when an OC design might be appropriate.”

Based off the learning from the partnership, the study authors developed a new framework, which is presented to inform inclusive PPI for palliative care research in the future. The findings from the study emphasize the need for increased collaboration in the area of palliative care research, according to the authors.

“More inclusive approaches to PPI in palliative care are necessary to inform research and improve palliative care in the future. Multi-disciplinary partnerships can create opportunities through reciprocal learning, innovative approaches, and co-designed resources to increase inclusivity and diversity in PPI for palliative care research. The evidence base in palliative care PPI is under-developed and this risks the integrity of PPI activities,” the authors concluded.

References

1. Mitchell S, Turner N, Fryer K, Beng J, Ogden ME, Watson M, Gardiner C, Bayly J, Sleeman KE, Evans CJ. A framework for more equitable, diverse, and inclusive Patient and Public Involvement for palliative care research. Res Involv Engagem. 2024 Feb 8;10(1):19. doi: 10.1186/s40900-023-00525-3. PMID: 38331966; PMCID: PMC10851547. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10889884/
2. What Are Palliative Care and Hospice Care? National Institute on Aging. May 14, 2021. Accessed March 1, 2024. https://www.nia.nih.gov/health/hospice-and-palliative-care/what-are-palliative-care-and-hospice-care