Governance of Learning Activities in Learning Healthcare Systems [Methods Study], United States, 2016-2021 (ICPSR 39711)
Version Date: Mar 23, 2026 View help for published
Principal Investigator(s): View help for Principal Investigator(s)
Steven Joffe, University of Pennsylvania
https://doi.org/10.3886/ICPSR39711.v1
Version V1
Summary View help for Summary
A learning health system, or LHS, is a health system that constantly looks for new ways to improve patient care. At an LHS, doctors and other hospital staff use learning activities to improve care, put what they've learned into practice, and share findings with other hospitals. Activities may include doing studies that compare treatments to see which one works better for which patients.
Governance refers to the way LHSs oversee learning activities. Governance includes people, committees, and policies that regulate learning activities. Including patients as partners in governance helps make sure learning activities address what's important to patients and protect patients' rights and interests. But LHSs don't always include patients in governance.
In this study, the research team wanted to learn how LHSs include patient partners in governance. The team interviewed patients and health system leaders to answer this question.
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Subject Terms View help for Subject Terms
Geographic Coverage View help for Geographic Coverage
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Study Purpose View help for Study Purpose
- Aim 1: Describe how LHSs define, identify, and classify learning activities
- Aim 2: Describe the governance mechanisms that LHSs use to oversee learning activities
- Aim 3: Describe how LHSs engage patients and families in governance
- Aim 4: Identify best practices for governance
Study Design View help for Study Design
This qualitative study examined governance structures and processes for learning activities within LHSs, with a specific focus on how LHSs engage patient partners in governance.
Researchers conducted semistructured interviews with 99 people including patients, family members, and senior administrators from 16 LHSs across the United States. Of the 16 LHSs, 7 were academic and 9 were non-academic medical centers.
Researchers also conducted eight focus groups with 77 community members in four cities. Of the community members, 80% were White, 6% were Black, 3% were Asian, 3% were American Indian/Alaska Native, and 3% reported another race; 12% were Hispanic. In addition, 51% were male.
To validate findings from the interviews and focus groups, researchers sent a survey to interview participants asking whether thematic results were accurate and credible.
A patient co-investigator and a stakeholder advisory board of patients, family members, and researchers helped plan and conduct the study.
Universe View help for Universe
Chief executive, nursing, medical, quality, information, and experience officers; IRB directors; patient/family advisory council chairs, members, or other patient and family leaders; and directors of research or their equivalents from health systems across US
Data Source View help for Data Source
Qualitative data from interviews with 99 individuals from 16 LHSs; qualitative data from 8 focus groups with 77 patients and family members
Notes
The public-use data files in this collection are available for access by the general public. Access does not require affiliation with an ICPSR member institution.
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This study is maintained and distributed by the Patient-Centered Outcomes Data Repository (PCODR). PCODR is the official data repository of the Patient-Centered Outcomes Research Initiative (PCORI).