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 three 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/caregiver factors included: clinical health (ECOG Performance Status, survival by cancer type/stage); functional health and quality of life (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/resource use (avoidance/delay in accessing care/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 productivity (institutional commitment/support for research, academic productivity index); and diversity, equity, inclusion, and belonging (screening/follow-up for social determinants of health, inclusivity of staff/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.

Harnessing the Collective Expertise of Patients, Care Partners, Clinical Teams, and Researchers Through a Coproduction Learning Health System

“…Early during the Promise Partnership pilot, we convened a Delphi panel of clinicians, scientists, health system leaders, patients, care partners, and community members to identify a balanced set of measures that could monitor the overall functioning of the CLHS. The panel identified 8 domains including functional health and quality of life; experience of care; cost and resource utilization; clinical outcomes; team well-being and joy in work; learning culture and community; scholarly engagement and productivity; and diversity, equity, inclusion, and belonging (Van Citters et al, 2022). Ongoing work has refined the measure set and integrated a subset of measures into existing DCC and health system measurement reporting systems.…”

“…The formative evaluation provides insight into mechanisms and contextual factors that facilitate or impede implementation. A summative evaluation will assess impact on measures in 8 domains (Van Citters et al, 2022) we hope to influence with the CLHS.…”

The reliability and validity of the TBI-CareQOL system in four diverse caregiver groups

“…Physical health scores were used to demonstrate convergent validity for 2 of the 11 TBI-CareQOL measures (Fatigue and Sleep-related Impairment). PROMIS Global Health has been used in different caregiver populations and has data to support its clinical utility in these cohorts [ 63 – 65 ].…”