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.
Professional Abstract
Background
In Learning Health Networks (LHNs), members collaborate around a shared interest, often a specific health condition. LHN members include patients, families, healthcare providers, researchers, quality improvement advisors, and community and advocacy organizations. LHNs use learning activities to improve care, help patients and providers get timely information, and share their findings with interested groups. Understanding organizational, cultural, and structural aspects of LHNs may encourage their creation and help improve healthcare delivery.
Objective
(1) To describe the culture of LHNs; (2) To explore members’ personal and emotional experiences with working in LHNs; (3) To examine how one LHN responded to the COVID-19 pandemic
Study Design
| Design Element | Description |
|---|---|
| Design | Exploratory qualitative study |
| Data Sources and Data Sets |
Non-participant field observations, semistructured formal interviews and other informal field interviews, and event artifacts/documents from four PPRNs that transformed into LHNs via a pilot program:
|
| Analytic Approach |
Inductive thematic analysis supported by grounded theory principles Case study of one LHN’s response to onset of COVID-19 pandemic |
| Outcomes |
Description of the culture of LHNs, participants’ accounts of their personal and emotional experiences with LHN culture, and an overview of how one LHN transformed its infrastructure to respond to COVID-19 |
Methods
This exploratory qualitative study observed four Patient-Powered Research Networks (PPRNs) that participated in a pilot program to transform into LHNs. In PPRNs, patients, caregivers, and community members provide self-reported data and contribute to all aspects of research. In the pilot, PPRNs added members and formed coalitions focused on building strategies to improve health outcomes and quality of life for patients in their network.
To learn about members’ perceptions of and experiences with LHNs, one researcher used ethnographic field methods to collect data from networks via field observations, semistructured and field interviews with LHN members, and a review of event documents, such as handouts and slideshows. The researcher also did a case study with one LHN about their COVID-19 response.
Results
LHN culture. LHN culture shaped everyday LHN actions. Examining culture as systems of meaning, social relations, and expression, the researcher found:
- A central belief was that the network’s work should focus on patient health outcomes.
- In LHN role structures, leadership team members often took administrative leadership roles in work groups; they balanced this structure with group values that encouraged broad member participation.
- LHNs had a shared technical vocabulary related to improvement science and quality improvement.
LHN member experiences. LHN members reported that LHNs are a safe environment to openly assess performance, especially compared with academic medical settings. Members emphasized the importance of patient and family involvement in LHNs versus other health networks. Members’ social and emotional commitments cultivated an environment of purposeful and fulfilling work. However, the intense amount of work and the volunteer nature of participants’ roles created the potential for burnout.
Case study of COVID-19 response. During the COVID-19 pandemic, one LHN halted most regular activities, including group meetings, site recruitment, and clinical data collection. Instead, activities focused on sharing information about the sites’ COVID-19 response. With an established infrastructure and culture, the LHN was able to act, share, and improve work processes during the pandemic.
Limitations
The study described experiences based on four LHNs. Results may differ for other LHNs.
Conclusions and Relevance
This study identified aspects of LHN culture and infrastructure that may help establish LHNs.
Future Research Needs
Future research could examine funding mechanisms for LHNs, including how to compensate volunteer members for their work.
Final Research Report
View this project's final research report.
Journal Citations
Related Journal Citations
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.