Table 1.

Illustrative Contextual Factors That Must Be Considered in Designing a Registry-Based Palliative Care Learning Health System

Illustrative contextual factors	Potential solutions
Palliative care provides services centered on each individual person and family, and their story, not generic care based on “what most people want.”	Measure impact at the level of the individual patient and family, including the degree to which care received is aligned with the changing priorities and concerns of patients and families
Palliative care is high-touch, narrative-based care	Preserve narrative while developing simple metrics reflective of the individual patient's priorities
Time compression associated with limited prognosis	Use brief patient surveys and minimize data collection burden
Illness trajectory changing	Capture and measure against changing priorities for health outcomes and experience
Burden, intensity, and complexity of serious illness for patients and caregivers	Focus on limited set of data elements that are needed for decision support, and longitudinal tracking of treatments and associated outcomes
Highly heterogeneous set of diseases with varying trajectories, prognoses, symptoms, and treatments	Focus on patient experience, develop core set of metrics for all conditions and create additional disease-specific metrics
Frequency of functional and cognitive impairment in serious illness	Use proxies to provide information on behalf of patient when needed
Multiple sites of palliative care delivery (home, office, emergency department (ED), inpatient, outpatient, etc.)	Create flexible dashboards that can be adapted to and are interoperable across different settings
Broad scope of palliative care delivery with frequent comanagement by a wide variety of teams	Provide for multiple users and inputs to the system