Prioritizing Measures That Matter Within a Person-Centered Oncology Learning Health System

Abstract

Background: Despite progress in developing learning health systems (LHS) and associated metrics of success, a gap remains in identifying measures to guide the implementation and assessment of the impact of an oncology LHS. Our aim was to identify a balanced set of measures to guide a person-centered oncology LHS.

Methods: A modified Delphi process and clinical value compass framework were used to prioritize measures for tracking LHS performance. A multidisciplinary group of 77 stakeholders, including people with cancer and family members, participated in 3 rounds of online voting followed by 50-minute discussions. Participants rated metrics on perceived importance to the LHS and discussed priorities.

Results: Voting was completed by 94% of participants and prioritized 22 measures within 8 domains. Patient and caregiver factors included clinical health (Eastern Cooperative Oncology Group Performance Status, survival by cancer type and stage), functional health and quality of life (Patient Reported Outcomes Measurement Information System [PROMIS] Global-10, Distress Thermometer, Modified Caregiver Strain Index), experience of care (advance care planning, collaboRATE, PROMIS Self-Efficacy Scale, access to care, experience of care, end-of-life quality measures), and cost and resource use (avoidance and delay in accessing care and medications, financial hardship, total cost of care). Contextual factors included team well-being (Well-being Index; voluntary staff turnover); learning culture (Improvement Readiness, compliance with Commission on Cancer quality of care measures); scholarly engagement and productivity (institutional commitment and support for research, academic productivity index); and diversity, equity, inclusion, and belonging (screening and follow-up for social determinants of health, inclusivity of staff and patients).

Conclusions: The person-centered LHS value compass provides a balanced set of measures that oncology practices can use to monitor and evaluate improvement across multiple domains.

Figure 1.

Prioritization of measures, according to ranking during round 3 voting. Green shading represents proportion of respondents ranking an item as first, second, or third most important within a domain. Gray shading represents proportion of respondents ranking an item as fourth through last within a domain. *Included within final recommendations. Brackets denote measures combined in final recommendation set. ^aScreening for breast, cervical, and/or colorectal cancer and/or tobacco use and cessation interventions. ^bPopulation health research includes health equity and disparity research, health promotion and disease prevention research, social determinants of health research, community health needs assessment, or community engaged research. CMS = Centers for Medicare & Medicaid Services; CoC = Commission on Cancer; COST-FACIT = COST-Functional Assessment of Chronic Illness Therapy; DEI = diversity, equity, and inclusion; ECOG = Eastern Cooperative Oncology Group; PRO-CTCAE = Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events; PROMIS = Patient Reported Outcomes Measurement Information System; QI = quality improvement; SDoH: social determinants of health.

Figure 2.

An oncology learning health system value compass. AD = advance directives; ECOG = Eastern Cooperative Oncology Group; POLST: physicians orders for life sustaining treatment; PROMIS = Patient Reported Outcomes Measurement Information System.