How can shared learning advance palliative care research?

Challenge

Adults with advanced illnesses, as well as their caregivers, experience a high burden of physical and psychosocial symptoms. Palliative care services can address these symptoms and help facilitate discussions between patients, caregivers, and their clinicians to ensure that patients’ care is consistent with their goals and preferences. However, many patients and their caregivers report unmet needs for these services.

Given the aging community and increasing demand for palliative care services, there is an urgent need to understand the most effective and efficient ways of delivering palliative care to patients living with advanced illnesses and their caregivers.

Solution

To maximize a more than $80 million investment by the Patient-Centered Outcomes Research Institute (PCORI) of 10 multisite comparative effectiveness research trials on palliative care and advanced care planning, Westat led a formal research network known as the Palliative Care Learning Network or PCLN.

The purpose of the PCLN was to

• Optimize the success of these 10 studies at achieving their aims and the impact of the evidence they develop through collaboration and shared learning
• Document and disseminate knowledge generated throughout implementing these studies to benefit the broader palliative care research field

Results

Through the PCLN, the study teams have shared learnings and addressed common challenges. The PCLN held nearly 30 meetings involving study operations and analytic staff, patients and family members, and external stakeholders. The PCLN hosted a meeting with the Centers for Medicare & Medicaid Innovation (CMMI) to share collective study implementation experiences to inform the design of future CMMI innovation Models.

PCLN studies also contributed to peer-reviewed journals and produced several joint conference presentations.

The collective research generated by the PCLN studies has produced transformative evidence for the palliative care field.