Prioritizing Measures That Matter Within a Person-Centered Oncology Learning Health System
Authors: Van Citters Aricca D , Kennedy Alice M , Kirkland Kathryn B , Dragnev Konstantin H , Leach Steven D , Buus-Frank Madge E , Malcolm Elissa F , Holthoff Megan M , Holmes Anne B , Nelson Eugene C , Reeves Susan A , Tosteson Anna N A ,   the Promise Partnership Delphi Panel, Mulley Albert , Barnato Amber , Cullinan Amelia , Williams Andrew , Bradley Ann , Tosteson Anna , Holmes Anne , Ireland Anne , Oliver Brant , Christensen Brock , Majewski Carol , Kerrigan Carolyn , Reed Catherine , Morrow Cathy , Siegel Corey , Jantzen Daniel , Finley David , Malcolm Elissa , Bengtson Elizabeth , McGrath Elizabeth , Stedina Elizabeth , Flaherty Ellen , Fisher Elliott , Henderson Eric , Lansigan Erick , Benjamin Evan , Brooks Gabriel , Wasp Garret , Blike George , Byock Ira , Haines Janet , Alford-Teaster Jenn , Schiffelbein Jenna , Snide Jennifer , Leyenaar Joanna , Chertoff Jocelyn , Ivatury Joga , Beliveau Johanna , Sweetenham John , Rees Judith , Dalphin Julia , Kim Julie , Clements Karen , Kirkland Kathryn , Meehan Kenneth , Dragnev Konstantin , Bowen Kris , Dacey Lawrence , Evans Linton , Govindan Malavika , Thygeson Marcus , Goodrich Martha , Chamberlin Mary , Stump MaryAnn , Mackwood Matthew , Wilson Matthew , Sorensen Meredith , Calderwood Michael , Barr Paul , Campion Polly , Jean-Mary Ralph , Hasson Rian M , Cherala Sai , Kraft Sally , Casella Samuel , Shields Samuel , Wong Sandra , Hort Shoshana , Tomlin Stephanie , Liu Stephen , LeBlanc Stephen , Leach Steven , DiStasio Susan , Reeves Susan , Reed Virginia , Wells Wendy , Hammond Whitney , Sanchez Yolanda 
Published: May 2022

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.