Appl Clin Inform 2019; 10(05): 841-848
DOI: 10.1055/s-0039-1700536
State of the Art/Best Practice Paper
Georg Thieme Verlag KG Stuttgart · New York

Patients as Agents in Behavioral Health Research and Service Provision: Recommendations to Support the Learning Health System

Hannah K. Galvin
1  Lahey Health, Burlington, Massachusetts, United States
Carolyn Petersen
2  Division of Biomedical Statistics and Informatics, Mayo Clinic, Rochester, Minnesota, United States
Vignesh Subbian
3  Department of Biomedical Engineering, University of Arizona, Tucson, Arizona, United States
Anthony Solomonides
4  Department of Systems and Industrial Engineering, University of Arizona, Tucson, Arizona, United States
› Author Affiliations
Funding Authors' efforts were partially supported by National Science Foundation under grant #1838745 (to V.S.), Patient-Centered Outcomes Research Institute clinical data research network funding (to A.S.), and National Institutes of Health-National Center for Advancing Translational Sciences funding for the Institute of Translational Medicine at Rush (to A.S.).
Further Information

Publication History

17 June 2019

28 August 2019

Publication Date:
06 November 2019 (online)


Authentic inclusion and engagement of behavioral health patients in their care delivery and in the process of scientific discovery are often challenged in the health care system. Consequently, there is a growing need to engage with and better serve the needs of behavioral health patients, particularly by leveraging health information technologies. In this work, we present rationale and strategies for improving patient engagement in this population in research and clinical care. First, we describe the potential for creating meaningful patient–investigator partnerships in behavioral health research to allow for cocreation of knowledge with patients. Second, in the context of behavioral health services, we explore the utility of sharing clinical notes to promote patients' agency in care delivery. Both lines of inquiry are centered in a Learning Health System model for behavioral health, where patients are agents in enhancing the therapeutic alliance and advancing the process of knowledge generation. Recommendations include genuinely democratizing the health care system and biomedical research enterprise through patient-centered information technologies such as patient portals. In research and technology development, we recommend seeking and tailoring behavioral health patients' involvement to their abilities, promoting patient input in data analysis plans, evaluating research and informatics initiatives for patients and clinicians, and sharing success and research findings with patients. In clinical practice, we recommend encouraging patients to read behavioral health notes on portals, engaging in proactive communication regarding note content, assessing outcomes including stress and anxiety in response to note content, and working with technology providers to support note-sharing governance and deployment.

Authors' Contributions

H.K.G., C.P., V.S., and A.S. wrote the first draft and revised the manuscript. This work is a collaborative effort between the AMIA Ethical, Legal, and Social Issues Working Group and the Mental Health Informatics Working Group.

Protection of Human and Animal Subjects

This work involved no humans or animals, and so was not subject to institutional review board oversight.