The growing prevalence, uncertain (life‐threatening) prognosis, and high symptom burden of non-communicable diseases make patient and public involvement and engagement (PPIE) relevant in palliative care research. PPIE can ensure that the rapid development of medical and technological opportunities for diagnostics, treatment, and care are aligned with the needs and priorities of a growing population affected by life-threatening illnesses. Years of initiatives in the UK and the United States have made PPIE a familiar aspect of cancer research, especially due to formal training requirements and the presence of patient advocates/representatives on review panels since the 1990s.
Therefore, PPIE in palliative care research is a field particularly suitable to study and learn from, both in terms of how PPIE is practised and determining its outcomes and impact.
Stakeholder involvement: an ‘active ingredient’ for quality research
Involving stakeholders most likely to benefit from research increases the odds for the uptake of best practices to improve services, research, and policy. This can be achieved through public involvement.
Public involvement is defined as the process by which research is conducted in partnership with patients, carers, or members of the community and policy makers as a pathway to ensuring that research conducted remains relevant to the population in question. Several approaches can be used to achieve this objective. For example, stakeholders could take part in planning studies, selecting the most appropriate study design, collecting data, analyzing and interpreting data, disseminating findings, or supporting knowledge translation. Public involvement is increasingly being recognized as an active ingredient for high-quality research, and is now a requirement for some funding agencies. Institutions with well-established patient-public engagement networks have reported positive outcomes, such as developing patient-centered research questions, aiding recruitment of study participants, and supporting research dissemination.1, 2
Evidence from Africa on best practices
In 2021 and 2022, the African Palliative Care Association in partnership with the Uganda Cancer Society undertook formative work to generate evidence on best practices for engaging patients and caregivers in research. Two focus groups (stratified by gender) were held to gather public and patient preferences for engaging in all research processes, including setting the agenda, designing and implementing the studies, and disseminating the results.
Key issues to consider when structuring PPIE in research
Themes arising from the focus groups pinpointed key issues. To be engaged effectively in research, patients recommended that researchers set up patient/caregiver engagement forums. Through such forums, routine engagements can be held to give patients an opportunity to share their views about priority research questions that can help improve their care, support the reviewing of information sheets and patient recruitment, participate in results disseminations, and act as advisors to provide input into ongoing research.
When research is conducted, patients and communities are not commonly invited to the dissemination forums. Meaningful patient-public engagement involves sharing research findings with study participants. Patients and caregivers particularly noted a need to know how the research findings can improve their lives.
“Many times researchers come and take information, including samples, but they never come back to share results of this information, we want to know how to live better, why not share with us.” Respondent 2, women’s group
Practical advice on blood draws
Another potentially useful route to patient engagement is promoting patient representation on research-related boards, including those for research and ethics regulation, research advisory, and patient recruitment. Patients can support the review of consent forms, for clarity and appropriateness of proposed procedures. One of my public engagements, with cancer patients, noted that it is not acceptable to draw blood from a patient who is ill without giving them a cup of porridge or light drink of their choice. This was an awakening on how often we take things for granted and how bringing patients on board as partners rather than subjects can help improve our approach to conducting research in resource-limited settings. Patient involvement would also strengthen patient protection from harm, discomfort, or adverse events, as they know the effect of the various procedures on their well-being based on experience. They can propose potential avenues for mitigation based on such experiences.
“Have a patient group on research which can meet say every month where patients can avail their information and some of our pressing problems should be reflected in the research agendas. This is how our care can improve practically speaking…” Respondent 4, men’s group
Public consultation enhances sustainability of achievements
The public part of engagement is with communities and policy makers. In 2020, the African Palliative Care Association consulted communities in refugee settlements, clinicians, community volunteers, and policy makers when developing a mobile app for collecting data on patient report outcomes. This was achieved by conducting a workshop with partners as part of our formative work. From this approach we learned that engaging communities and policy makers improves ownership of the products or outcomes, which enhances sustainability of any key achievements. In addition, it improves the uptake of the intervention because it meets the needs of the communities, care providers, and policy makers.
“Thank you for being so engaging and inclusive, I just like this app because besides the palliative care outcomes data, we are able to monitor TB, hepatis B, and COVID-19 all from the comfort of this tablet. I think it is a more efficient use of the resources.” Clinician and senior manager, Bidibidi Refugee Settlement, Yumbe, Uganda
- Collins K, Boote J, Ardron D, et al. Making Patient and Public Involvement in Cancer and Palliative Research a Reality: Academic support is vital for success. BMJ Support Palliat 2015; 5: 203–206.
- Pii KH, Schou LH, Piil K, et al. Current Trends in Patient and Public Involvement in Cancer Research: A systematic review. Health Expect 2019; 22: 3–20.
Eve Namisango is Programs and Research Manager at the African Palliative Care Association, a BUILDcare Fellow at Cicely Saunders Institute King’s College London, coordinates the 170-member African Palliative Care Research Network, and is an honorary fellow at Makerere University Uganda.
This article was published in the International Association for Hospice and Palliative Care Newsletter Volume 23, Number 10: October 2022 and is kindly made available to ehospice audience by the IAHPC.