# Patient Roles and Patient Knowledge in Learning Health Systems

## TL;DR

This paper discusses how patients should be more involved in learning health systems, which use ongoing data to improve healthcare decisions.

## Contribution

The paper introduces a framework for patient involvement in learning health systems, emphasizing training, defined roles, and addressing differing views on evidence.

## Key findings

- Learning health systems often lack consistent patient involvement.
- Co-developed training and support can enhance patient engagement.
- Patient roles in data collection and analysis need clearer definitions.

## Abstract

Learning health systems collect and analyse data on an ongoing basis to make real‐time, evidence‐informed decisions. Patient involvement is central to learning health systems. In this perspective paper, we describe implications that LHSs' distinguishing features have for patient involvement. These include the need to: build capacity for patients to engage across cycles of data collection and analysis; flesh out the role of patients with respect to collection and analysis of health system data; and create infrastructure to support involvement within learning‐intensive environments. We argue that meaningfully involving patients in LHSs requires attention to the relational and epistemological complexity of this endeavour. We conclude with six recommendations for practice, policy, and research.

At present, learning health systems do not always involve patientsTraining and supports, co‐developed by patients, can support involvementPatient roles related to health system data need to be definedMeaningful involvement require attention to differing ideas about evidence

At present, learning health systems do not always involve patients

Training and supports, co‐developed by patients, can support involvement

Patient roles related to health system data need to be defined

Meaningful involvement require attention to differing ideas about evidence