Abstract
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.
Keywords
mental health - patient participation - medical records - biomedical research - patient
engagement - patient collaboration - OpenNotes - shared chart
