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- Van Citters, Aricca D., et al.
(author)
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Prioritizing Measures That Matter Within a Person-Centered Oncology Learning Health System
- 2022
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In: JNCI Cancer Spectrum. - : Oxford University Press. - 2515-5091. ; 6:3
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Journal article (peer-reviewed)abstract
- BackgroundDespite 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.MethodsA 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.ResultsVoting 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).ConclusionsThe person-centered LHS value compass provides a balanced set of measures that oncology practices can use to monitor and evaluate improvement across multiple domains.
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- Batalden, Paul B., et al.
(author)
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Episode 9: Stories clarify [podcast]
- 2022
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Other publication (pop. science, debate, etc.)abstract
- Kathy’s story starts with the lived reality and prognosis for a patient-person in a coma on a ventilator machine. She invited everyone involved to describe the situation. Their narratives revealed that family members and the neurologist had very different understandings of the word “okay.” Kathy connected these insights with scientific data to enable the interested parties to come to a common understanding and decide next steps. Kathy draws on this experience when she teaches others the value of narrative medicine. Among other things, it’s a way to clarify what’s at stake and to correct misunderstandings, especially when critical medical decisions must be made.
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