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What was the project about?

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.

What did the research team do?

The research team interviewed 99 people from 16 LHSs across the United States by phone. The team talked with patient partners, family members, and LHS senior staff. Of the 16 LHSs, 7 were connected to medical schools that train doctors and 9 weren’t.

The research team also held eight focus groups with 77 community members in four cities. Of these, 80 percent were White, 6 percent were Black, 3 percent were Asian, 3 percent were American Indian/Alaska Native, and 3 percent reported another race. In addition, 12 percent were Hispanic, and 51 percent were men.

Then the research team created a summary of the results. They sent a survey to the people they interviewed. The survey asked whether the results were accurate.

A patient partner and an advisory board including patients and family members gave input on the study.

What were the results?

Patient partners had different levels of involvement in LHSs. In some, patients gave input but didn’t take part in research processes or help make decisions. In others, patients were much more involved. In those LHSs, patients took part in all aspects of the research process and helped make decisions. Also, some LHSs had detailed processes for including patient partners in governance.

When patient partners were involved in governance, they gave input on

• Choosing research topics
• Designing studies and collecting data to see how learning activities affect patients
• Putting findings from learning activities into practice
• Sharing findings with other hospitals and health systems
• Protecting the rights of patients who take part in studies

The research team also learned how LHSs could improve ways to include patient partners in governance, such as

• Creating systems to make sure they can take part
• Training patients who want to be more involved
• Identifying steps for them to become more involved

What were the limits of the project?

The study included 16 LHSs. Results may differ in other LHSs.

Future research could examine how to involve patient partners consistently across LHSs.

How can people use the results?

LHSs can use the results when looking for ways to include patients in governance.

Background

Learning health systems (LHSs) are health systems that formally incorporate learning activities into the healthcare delivery process to promote continual improvement in care. Examples of learning activities include quality improvement and comparative effectiveness studies. Governance includes organizational structures and processes that regulate learning activities, such as committees, policies, and metrics. Engaging patients as partners in governance helps ensure that learning activities reflect patients’ priorities and respect patients’ rights and interests.

Objective

To identify how LHSs engage patient partners in the governance of learning activities

Study Design

Methods

This three-year 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.

Results

Patients’ involvement ranged from marginal to substantial. At one extreme, LHSs included minimal patient participation in the research process and no involvement in decision making. LHSs with intermediate degrees of patient engagement in governance showed varied levels of participation in the research process but no involvement in decision making. At the other extreme, LHSs included substantial patient engagement in both the research process and decision making. Also, some LHSs had extensive structures and processes for engaging patients in governance.

Aspects of governance often involving patient partners included

• Setting priorities for learning activities
• Designing and conducting learning activities
• Protecting the rights and interests of participating patients
• Evaluating the impact of learning activities
• Sharing findings from learning activities across the system
• Disseminating findings to external audiences

Based on study findings, suggested approaches to better integrate patients into LHS governance include establishing dedicated infrastructures for patient engagement, creating structured training for patient partners, and defining pathways for patient partners to become increasingly engaged in governance as they gain experience and commitment.

Limitations

Results are based on data from respondents at 16 LHSs. Findings may not generalize to all LHSs.

Conclusions and Relevance

Among LHSs in this study, patient partners’ integration into governance ranged from marginal to substantial. Results suggest strategies for systematically involving patient partners in the governance of LHSs.

Future Research Needs

Future studies could examine efforts to standardize governance across LHSs.