TY - JOUR
T1 - Patients as Agents in Behavioral Health Research and Service Provision
T2 - Recommendations to Support the Learning Health System
AU - Galvin, Hannah K.
AU - Petersen, Carolyn
AU - Subbian, Vignesh
AU - Solomonides, Anthony
N1 - Publisher Copyright:
© 2019 Georg Thieme Verlag. All rights reserved.
PY - 2019
Y1 - 2019
N2 - 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.
AB - 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.
KW - OpenNotes
KW - biomedical research
KW - medical records
KW - mental health
KW - patient collaboration
KW - patient engagement
KW - patient participation
KW - shared chart
UR - http://www.scopus.com/inward/record.url?scp=85074622792&partnerID=8YFLogxK
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U2 - 10.1055/s-0039-1700536
DO - 10.1055/s-0039-1700536
M3 - Article
C2 - 31694055
AN - SCOPUS:85074622792
SN - 1869-0327
VL - 10
SP - 841
EP - 848
JO - Applied Clinical Informatics
JF - Applied Clinical Informatics
IS - 5
ER -