Results Summary

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.

Final Research Report

View this project's final research report.

Peer-Review Summary

Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also assesses how the project addressed PCORI’s Methodology Standards. During peer review, experts read a draft report of the research and provide comments about the report. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. These reviewers cannot have conflicts of interest with the study.

The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve descriptions of the conduct of the study or to clarify the connection between results and conclusions. Sometimes, awardees revise their draft reports twice or more to address all of the reviewers’ comments. 

Peer reviewers commented and the researchers made changes or provided responses. Those comments and responses included the following:

  • The reviewers questioned the use of the term learning healthcare system to describe the systems and organizations studied in this project, noting that this terminology does not convey an interest in whole-person health as readily as the term learning health system (LHS). The researchers agreed that the second term was more appropriate to the goals of their study and revised the report accordingly.
  • The reviewers were concerned that the report was too focused on the distinction between research and quality improvement, questioning whether there was truly confusion about the differences between research and quality improvement concepts and methods. The researchers responded that the difference between research and quality improvement has been a major theme in the ethics literature on LHSs, and that this difference was an important motivator for the present study. In addition, the researchers explained that their qualitative interviews addressed the differences between research and quality improvement, asking interviewees to describe how their institutions navigated the distinctions.
  • Reviewers questioned how the researchers approached the issue of practice and standardization across an LHS. The reviewers explained that in particularly large and diverse health systems, standardization of health care approaches and procedures would be inappropriate as this would not account for the different needs of a diverse population. The researchers noted that the theme of standardization emerged in their qualitative interviews as a way to gauge system change and quality improvement. They revised the report to better address reviewers’ concerns about standardization across diverse systems.
  • One reviewer questioned how the researchers identified their sample of LHSs, noting that the inclusion criteria or justification for identifying certain systems as LHSs were not clear from the report and that this was a limitation of the research.  The researchers acknowledged this limitation and added detail to the report regarding the criteria they used to select the LHSs they invited to participate in the study. 

Conflict of Interest Disclosures

Project Information

Steven Joffe, MD, MPH
University of Pennsylvania
Governance of Learning Activities in Learning Healthcare Systems

Key Dates

April 2016
January 2022

Study Registration Information


Has Results
Award Type
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: April 26, 2022