Public-Academic Partnerships: The Thresholds-Dartmouth Partnership and Research on Shared Decision Making

Evidence-based medicine asserts that the inclusion of patient preferences, along with scientific evidence and clinician skills, should be a pillar of medical decision making ( 1 ). The reality of modern health care is that the treatment of most disorders involves complex tradeoffs, which are sensitive to patients' preferences, rather than a single best choice ( 2 ). As health care systems have attempted to incorporate patients' values, goals, and preferences into daily operations, the model of shared decision making has emerged as a central operational approach ( 3 ). In the shared decision-making model, two partners—the health care professional and the patient—share their respective areas of expertise (scientific knowledge and personal experience and preferences) and then negotiate and commit to a collaborative agreement regarding major health care decisions ( 3 ). Shared decision making has been adopted in manifold forms in physical health care settings, and current medical journals abound with studies of patient decision making, decisional conflict, decision aids, informed patient choice, and shared decision making. Yet, little of this work has been extended to the mental health field.

We believe that the concept of shared decision making deserves a scientific test in mental health care for several reasons. First, the need to shift toward client-centered mental health care remains great ( 4, 5 ). Its absence has serious adverse consequences. Most individuals with serious mental disorders are not in the treatment system, often because they have opted out ( 6 ). Those in the mental health system show variable treatment adherence for a number of reasons ( 7 ). These findings underscore the fact that most decisions in mental health care are sensitive to clients' preferences because of the long-term nature of mental illness and the uncertain effectiveness of interventions. In addition, patient centeredness includes cultural sensitivity and addresses the issues of access to and acceptability, use, and outcomes of mental health services by diverse, particularly underserved, populations ( 8 ). Second, shared decision making creates a bridge to general health care that may stimulate communication, research collaboration, and parity. Third, shared decision making is already producing positive outcomes in general health care and to some extent in mental health care ( 9 ). Fourth, modern information technology creates new opportunities to use electronic decision support systems for the implementation of shared decision making ( 10 ).

Thresholds and Dartmouth have initiated a program of research on shared decision making in mental health over the past three years. A brief summary of our activities follows.

Seminar. Dartmouth conducts a bimonthly seminar on shared decision making for faculty, graduate students, and postdoctoral students. Clinical researchers and members at Thresholds join this seminar by conference phone. In addition to reviewing the literature, this seminar serves as a forum to plan and review research projects.

Reviews. Dartmouth researchers, including graduate students and postdoctoral fellows, have written several reviews on aspects of shared decision making in mental health ( 11, 12, 13, 14 ).

Conferences. In 2007 and 2008 the first two of Dartmouth's Annual Summer Institutes on shared decision making prominently featured mental health ( www.dartmouth.edu/~cecs/cic/index.html ). In February 2008 Dartmouth hosted a conference on shared decision making in mental health and aging, and in September 2008 Dartmouth hosted a national conference on ethnoracial minority groups and disparities in mental health care. Thresholds research and clinical staff members attended these conferences.

Needs assessments. Our needs assessment surveys confirmed that most clients with serious mental illnesses prefer shared decision making to autonomous decision making by clinicians or clients ( 15, 16 ).

Fidelity to shared decision making. Dartmouth and Thresholds are currently developing the Shared Decision Making Fidelity Scale. As in the development of other fidelity scales, this project identifies the key principles of the construct, nominates and tests items, constructs a scale, and studies the scale psychometrically. The resulting scale will facilitate several other planned research projects.

Decision support centers. In collaboration with clients and clinicians, we have established two decision support centers, one in New Hampshire and one in Chicago, where we can develop and test computerized decision support systems, including video-streamed client recovery stories, information on services and outcomes, and peer supports. For all decision supports, client-members and clinicians at Thresholds are involved in screening and modifying the materials.

Computerized self-assessment. We have conducted a series of studies to confirm that clients, even those who have recently entered the state psychiatric hospital, can participate in computerized education and self-assessments ( 17 ). Through these studies, we have developed Web-based procedures for data collection and for providing aural and touch-screen alternatives for clients who do not read or type. Our information technology specialists have created a generic computer architecture that can host a variety of decision support systems for education, self-assessment, and shared decision making. The system flexibly permits adding and refining educational materials, video testimonies, decision supports, questionnaires, and other elements. All of these elements are tested for usability by clients and clinicians.

Shared decision making and medication use. Patricia Deegan, Ph.D., who joined the Dartmouth faculty in 2008, has prepared and pilot tested a computerized program for shared decision making in psychiatric rehabilitation called Common Ground ( 10 ). Early studies of this program demonstrate high degrees of satisfaction among clients, physicians, and nurses. A separate study demonstrated the feasibility of using a decision support system in the state hospital to help clients reduce polypharmacy ( 18 ). Currently Dartmouth and Thresholds researchers are studying the community psychiatrist's needs and perspectives in relation to electronic decision supports and shared decision making.

Shared decision making and goal setting. We are currently studying how care planning decisions are negotiated between clients and clinicians in mental health care decision making. This mixed-methods study compares audio-recorded planning sessions for usual care and planning sessions enhanced with an electronic decision support system. The research includes qualitative interviews with clinicians and service users that focus on how they negotiate and make decisions about mental health care with and without the presence of an electronic decision support system designed to support shared decision making.

Shared decision making and smoking cessation. Another pilot study is currently testing an electronic decision support system for mental health clients who want to learn about smoking cessation or design their own quit plan. This project was initiated by Thresholds' interest in supporting members in smoking cessation and improved health and wellness.

Shared decision making and other services. Other decision support modules currently being developed highlight co-occurring substance use disorders, supported employment, general medical care, and medical care for hepatitis and HIV infections.

Shared decision making and ethnoracial disparities. Ethnoracial variation in access, engagement, and experience of specialty mental health services by persons with serious mental disorders has been a long-standing interest at Dartmouth and Thresholds ( 19, 20, 21 ). Current studies focus on shared decision making.