Results Summary

What was the project about?

Learning Health Networks, or LHNs, help get information about treatments to patients and providers at the right time. In LHNs, members work together to study a health condition and improve patient care through different activities. Members can include patients, families, health providers, researchers, and community organizations.

In this study, a researcher wanted to learn about the culture and structure of LHNs to help improve care and research. The researcher looked at the:

  • Culture of LHNs
  • Experiences of LHN members
  • Changes one LHN made during the COVID-19 pandemic

What did the research team do?

The researcher worked with four Patient-Powered Research Networks, or PPRNs, that were in a program to change into LHNs. In PPRNs, patients, families, caregivers, and community members share health data with a network. They work closely with researchers to plan and conduct research. In this program, each PPRN formed a team of patients and health professionals. Working as LHNs, the teams focused on improving health and quality of life for patients in their network.

The four LHNs were:

  • Autism Learning Health Network
  • Glomerular Disease Learning Network
  • Patients, Advocates and Rheumatology Teams Network for Research and Service
  • Epilepsy Learning Healthcare System

The researcher observed the work of LHNs, interviewed LHN members, and reviewed meeting materials from each LHN. The researcher also talked with one LHN about their response to COVID-19.

What were the results?

Culture of LHNs. The researcher described LHN culture in terms of beliefs, social relationships, and shared language. For example, one central belief was that LHNs should focus on patient health outcomes.

LHN member experiences. LHN members said that LHNs were a safe place to openly assess their performance compared with traditional research settings. Members said that patient and family involvement in the work was important. Also, LHN members said their work was meaningful. Most work was done on a volunteer basis. As a result, LHN members may feel overworked and stressed out by the role.

COVID-19 response. Looking at one LHN, the researcher found that they stopped most of their regular activities when the COVID-19 pandemic started. These activities included holding meetings, recruiting sites, and collecting data. Instead, the LHN focused on sharing information about the sites’ COVID-19 response to improve work processes during the pandemic.

What were the limits of the project?

The study included four LHNs. Results may differ for other LHNs.

Future research could focus on ways to fund LHNs, including paying LHN members for the work they do.

How can people use the results?

Research networks can use these results when they consider other ways they can work to improve care.

Final Research Report

This project's final research report is expected to be available by April 2023.

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 pointed out that the study did not appear to address its specific aims, which were to understand the transition experiences of learning health networks and how these networks interacted with other entities. The researcher explained that as a qualitative project, the original aims were considered provisional and likely to change over the course of the study. She revised the report’s specific aims to explain how the aims evolved as data were collected and that in the end, the major contribution of this research is the development of a social theory of learning health networks.
  • The reviewers critiqued the report for minimizing patient and stakeholder concerns and asked the researcher to describe how her research addressed the major issues identified by learning health network members. The researcher explained that she had originally planned to focus even attention to the different stakeholder groups in a learning health network, including patients, clinicians, program managers, and other groups. During the course of the study which partly took place during the COVID-19 pandemic, the researcher had limited success in obtaining interviews with patients or in observing patient and family groups to understand their concerns. The researcher noted that she plans to use what she did learn in this study in her future research and in her approach to patients and family members.
  • The reviewers questioned the generalizability of this research to learning health systems given that the researcher primarily focused on one such network. The researcher stated that she had some data from several learning health networks but the deepest analyses were based on a single network. She revised her report to focused on these most detailed analyses and reframed the focus of this report to be about collaborative learning health systems specifically.

Conflict of Interest Disclosures

Project Information

Alexandra Vinson, PhD
University of Michigan
$110,418
Field Study of Care Innovation: Transforming Health Care Systems into Learning Networks

Key Dates

September 2022
2018
2022

Tags

Has Results
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: December 7, 2022