Applying a Model of Stakeholder Engagement to a Pragmatic Trial for People With Mental Disorders

Our stakeholder engagement approach, which is based on the Patient-Centered Outcomes Research Institute’s model for research on patient-centered outcomes (3,4), incorporates the following principles: stakeholders are involved in every step of the study, from design to dissemination and determination of sustainability; we seek to actively engage a variety of stakeholders; with our partners, we aim to foster an environment of open communication, colearning, and mutual respect; and stakeholders are full partners in all key study decisions.

This study was developed as a partnership between Emory University, the University of South Carolina, and the South Carolina Department of Mental Health. Stakeholders include patients who use mental health emergency care; mental health providers; public-sector health care payers and purchasers, including the South Carolina Department of Mental Health and the South Carolina Department of Health and Human Services; and mental health workforce and advocacy organizations. Partnerships with these groups are essential for mental health programs, given the continued fragmentation between the mental health, substance use, and medical health care systems and the challenges in providing services that may fall outside of the typically reimbursed services (5). Below, we describe how we have engaged these stakeholder groups. [A table showing additional information on engagement strategies, roles, and results of the various partnerships is available as an online supplement to this column.]

The study is guided by a national advisory board and state implementation team. These groups ensure that the research findings are relevant to a variety of audiences and plan for program sustainability (3). Existing collaborators at state governmental and advocacy agencies helped us identify and approach members for these two groups, including a patient and peer support specialist from a local CMHC. We have not encountered difficulties in finding patients and providers willing to serve on the groups and have experienced minimal turnover.

The advisory board, which meets annually, oversees key study decisions and will spearhead planning for program sustainability and national dissemination of results. The advisory board is chaired by the director of a consumer-run mental health agency and includes four additional members from national-level managed behavioral health care, patient advocacy, and mental health workforce development organizations. Following advisory board recommendations, mental health recovery was added to the study proposal as an outcome measure. The board also provided input that was incorporated into the care navigator program

The implementation team oversees the planning and execution of the study, ensuring that findings apply to patients and the public mental health system. The implementation team also facilitates colearning between the partners and the research staff; stakeholders gain insight into the research process through involvement in study planning and decision making, and research staff learn how to best engage patients and incorporate patient-centeredness in the clinical sites. The implementation team consists of five members who represent patients and providers from local CMHCs in South Carolina, a patient advocate from the National Alliance on Mental Illness South Carolina, and representatives from the South Carolina Department of Mental Health and the South Carolina Department of Health and Human Services. The implementation team has contributed to refining recruitment and enrollment protocols, as well as developing the intervention manual and materials. It has also provided the study team with a greater understanding of the state mental health care system, such as which billing codes apply for care navigation strategies. [A table showing examples of changes resulting from stakeholder engagement is available as an online supplement to this column.]

Site visits are another strategy to initiate partnerships with stakeholders involved in participant recruitment or program implementation. The research team made site visits to build rapport with partners, such as mental health liaisons, ED nurses, telepsychiatrists, and CMHC clinic staff; learn about site-specific contextual factors; and finalize training with care navigators. CMHC clinic directors helped identify professionals and peers at their clinics who could serve as care navigators. These visits also resulted in adjustments to the care navigators’ training, patient recruitment protocols, and the warm-handoff phone call, which is the first interaction between the care navigator and patient in the ED. [A table showing examples of changes to the care navigator program based on stakeholder engagement and input is available as an online supplement to this column.] Speaking with site representatives led to the development of site-specific back-up plans, such as training extra staff to step in when the normal care navigator is sick or on vacation. Mental health liaisons proved to be valuable partners because they are Department of Mental Health employees who split their time between the ED and CMHC, thus providing a linkage between the two systems. However, not every CMHC has a mental health liaison, and staff turnover with liaisons and peer support specialists has been a challenge because it necessitates forming new relationships.

We used qualitative methods to gather patients’ and clinicians’ perspectives and to inform the program development, implementation, and revisions. Qualitative methods allow us to gain in-depth information about patients’ and clinicians’ experiences with care linkage and engagement, as well as feedback on the care navigator program.

During the development of the care navigator program, we conducted patient focus groups and key informant interviews to ensure the feasibility, patient-centeredness, and applicability of the program. Two focus groups at two CMHCs were conducted with 12 patients who had previous experience in an ED. Key suggestions from these focus groups included that care navigators should treat each patient as an individual and not assume that all experiences are the same. Patients recommended that care navigators convey compassion and genuine caring. As one patient explained, “You need to listen, you need to pay attention to us, you need to be aware where you're coming from and not judge us…. We need you to listen and feel, because sometimes it's hard for us to explain these things.”

Interviews with seven key informants provided insights into the current practices in the ED or CMHC in which they worked and any linkages between the two. Key informants discussed the importance of validating patients’ concerns, as well as being nonjudgmental and supportive. As one key informant noted, “I would think to try to find some way to say [to patients], ‘We’re here for you.’” They also suggested that when care navigators talk to patients in the ED, they should describe what the patients can expect when they arrive at the CMHC for their first appointment after discharge. One key informant said, “And the other thing that might be helpful for new [patients] is actually having brochures about the mental health center and what we can do. Because a lot of times they’re like, ‘I was just told to show up here, I don’t know what I’m doing.’” That doesn’t mean they weren’t told, but when you’re in a crisis, you don’t hear and process well.”

The recommendations from patients and key informants were incorporated into the care navigator program, training, and materials. We revised wording in the program manual to clearly convey empathy and support, added examples of barriers to receiving mental health care to the program manual, and developed materials to give to the patients in the ED.

Qualitative data collection will continue annually with patients and care navigators for the length of the study. Patient interviews will examine experiences with care navigation and assess acceptability of the care navigator program. Patients discuss the barriers they face in engaging in mental health care, whether and how the care navigator program has been helpful in overcoming these barriers, and recommended improvements for the program. Interviewing care navigators provides an in-depth understanding of their experiences in delivering the program. Care navigators describe encounters with patients, how well the program fits with their clinical duties, successes and challenges with program delivery, and feedback on how to improve the program. Each year, findings from the interviews will inform program implementation, with adjustments being made as needed.