Stakeholder Engagement Is Important in Palliative Care Research
March 1, 2025 2 minutes read
By Stacey Kusterbeck
Involving stakeholders in palliative care research promotes successful recruitment, data collection and analysis, and dissemination of study findings. However, researchers face many challenges in doing this effectively. The Patient-Centered Outcomes Research Institute (PCORI) created the Palliative Care Learning Network (PCLN). This learning collaborative includes nine PCORI-funded multisite studies of palliative care and advance care planning interventions for diverse populations. Representatives from the PCLN formed a working group consisting of patients and other key stakeholders from nine different palliative care study teams.
“This was a great opportunity to study successful strategies for promoting stakeholder engagement in advance care planning and palliative care research,” reports Anne Walling, MD, PhD, a palliative care physician and researcher at UCLA Health.
Walling and colleagues surveyed team members about how they engaged with patients, clinicians, and researchers.1 The study teams also talked about barriers to engagement and ways to overcome those barriers. “Despite the diversity of studies, many of the barriers and facilitators to stakeholder engagement were similar across studies,” reports Walling.
Turnover (because of health, relocation, or employment changes) was identified as a challenge by most study teams. Most study teams noted that having staffing and funding was a key facilitator for engagement.
“This study highlights the value of including the patient, caregiver, and other key stakeholders in all study phases, from the preparatory phase all the way through the data analysis and dissemination phase,” underscores Walling.
Reference
- Walling AM, Verma M, Grudzen CR, et al. Implementing Patient-Centered Outcomes Research Institute stakeholder engagement principles in models of palliative care delivery and advance care planning research. Med Care. 2024;62(10):693-700.
Involving stakeholders in palliative care research promotes successful recruitment, data collection and analysis, and dissemination of study findings. However, researchers face many challenges in doing this effectively.
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