By Anna Spencer, Center for Health Care Strategies
Partnering with consumers is a key strategy for health care organizations to better understand and support their patients’ needs. Patients can provide valuable insights into the opportunities for health care systems to more effectively address the underlying contributors to poor health. One way to involve consumers is by creating a consumer advisory board (CAB) — a formal group of patients brought together to provide input on how health care systems can better understand priority health issues and improve care delivery.
As part of the Community Partnership Pilot project, supported by the Robert Wood Johnson Foundation and coordinated through the Complex Care Innovation Lab, the Center for Health Care Strategies (CHCS) spoke to several health care organizations, including Boston Health Care for the Homeless Program, Camden Coalition for Healthcare Providers, Roots Community Health Center, University of California, San Francisco (UCSF) Women’s HIV Program, and Stephen and Sandra Sheller 11th Street Family Health Services about best practices for establishing and maintaining consumer advisory boards. Below are key considerations to help guide health care systems in creating successful community advisory boards. See also an accompanying infographic.
Laying the Groundwork
Establishing and maintaining a CAB requires substantial time and effort. A CAB is an explicit acknowledgment that a health care organization is going to engage in an ongoing, collaborative relationship with consumers, and that their opinions will be heard and valued. Stating the goals, expectations, and purpose of the CAB upfront through mechanisms such as by-laws will ensure transparency in the CAB process. It is also vital to have buy-in from both leadership and community members on how information will be collected and used, as well as establish processes for considering CAB recommendations. For example, 11th Street Family Health Services, a Philadelphia-based federally qualified health center that is part of the Drexel University health system, found that a dedicated senior-level champion within the health system was a key component to their CAB’s success. This support from senior leadership ensured continued consumer engagement through the CAB process, and also created the political will to act on CAB recommendations.
Health care organizations can use a number of strategies to recruit CAB members, including word-of-mouth, recommendations from care managers/providers, promotion on social media platforms, and endorsements from key community leaders. Health care organizations can screen potential CAB members through a formal application process, or accept referrals through known connections. The Roots Community Health Center in Oakland, California, notes that recruiting and retaining CAB members is an ongoing process, rather than a one-time event, and that health care organizations need to be prepared for some level of flux with CAB membership. It is important to seek out a diverse range of CAB members, including along gender, race/ethnicity, educational and health literacy lines, as well as experiences with the health care system. Additionally, ensuring that CAB members are aware of and willing to meet participation expectations is also key to their success.
Supporting Meaningful Participation
Creating structures and policies that encourage patients to feel free to participate and share their experiences is vital to a successful CAB. Health care representatives and consumers should co-design CAB guidelines and expectations, such as how often the group will meet and attendance requirements, as well as a CAB leadership structure. The UCSF Women’s HIV program, for example, noted that jointly developing agendas with its CAB representatives has ensured that consumers feel that their issues are as important and valued as those of the health care system. It is also important to mitigate the likely power dynamics between large health care systems and patients, especially among low-income and marginalized populations. One way to accomplish this is to appoint a consumer to the role of CAB chairperson.
Reducing Barriers to Participation
Health care organizations should consider the barriers to participating in CABs and create strategies to mitigate these barriers. The Camden Coalition of Health Care Providers noted that it is important not to assume what barriers might be, but rather work collectively with CAB representatives to understand their needs and experiences. Other considerations include holding meetings at accessible locations and times, i.e., in community settings and after conventional work hours, and providing transportation support and childcare.
Compensating Members for Expertise
Acknowledging the value of CAB members’ time and expertise is critical. Health care organizations can pay people with lived experience in a number of ways, including hourly wage, honoraria, gift cards, or meals. It is important to reimburse individuals in a way that is simple for both the health care organization and the recipient. The Roots Community Health Center found that offering weekly stipends in the form of checks is easiest for CAB members and clinic staff, while Boston Health Care for the Homeless Program provides a $25 cash stipend per meeting. Access to a bank account is not universal, and lack of ID and user fees can serve as barriers to cashing checks, so health care organizations should consider collaborating with CAB members to establish both an appropriate amount and method for compensation (i.e., cash, check, gift card, etc.)
Why a Consumer Advisory Board Matters
CABs are an important mechanism for bringing the patient experience into the health care decision-making process — a process that patients are often excluded from. CABs offer patients opportunities to not only provide input on their needs and experiences, but also have a say in how health care systems consider addressing these needs. A well-designed CAB ensures that health care systems will be more attuned to patient needs and priorities, and can inform the development of more effective programs, services, and community relationships.