March 15, 2018
At Centro Sol, a health advocacy group for Latino families in Baltimore, members of the Latino Family Advisory Board/El Consejo de Familias Latinas (LFAB)—primarily mothers whose children are seen by pediatricians at the Johns Hopkins Bayview Hospital—voice their recommendations for improved care: bilingual materials and registration, more culturally competent questionnaires, advocacy to remove barriers to Medicaid and Supplemental Nutrition Assistance Program (SNAP) enrollment for U.S.-born children whose parents may be undocumented.
The LFAB formed in 2011, in response to feedback that healthcare services at Johns Hopkins weren’t meeting the needs of the rapidly growing population of Spanish-speaking families in the city. As these families seek care, they—like many other communities of color—experience widespread discrimination and marginalization. Navigating the healthcare system is complex for any patient, but factors such as language barriers and threats to immigrant groups only amplify those challenges. Through regular meetings, LFAB members surface concerns related to care delivery, support services, proposed research, and policy development. In exchange for members’ expertise and time, they receive a stipend and free child supervision during meetings. In addition to seeing proposed changes actually take place in the clinics where their children receive care, participants also share that they feel valued and heard.
This sort of work is needed now more than ever: Across the country, healthcare institutions are increasingly on the hook for managing the health of populations and moving outside the four walls of the clinic, to the spaces where patients live, work, and play. Groups like LFAB show us that when patients are active and vocal participants in their care, the conversation can stretch beyond medical treatment to embrace actually achieving better health.
It’s worth understanding what’s driving this paradigm shift. And there’s one factor, in particular, fueling this change: recent health reforms at the federal and state level prioritizing value over volume—for example, the use of capped “global budgets” for patient care, rather than the traditional fee-for-service model. With a set amount of money to spend on an entire patient population, hospitals must find ways to prevent repeat visits to the emergency room or chronic conditions from spiraling into more serious illness.
But given that 90 percent of what impacts health outcomes takes place outside the clinic, how can hospitals meet these financial demands?
The answer is in authentic collaboration. Forging strong partnerships between hospitals, community organizations, and patients is crucial to successfully facilitating more fundamental shifts in health care. And many hospitals, fortunately, are rising to the challenge, investing in local community revitalization efforts, building housing, and extending financial equity to neighborhoods that have been historically disinvested from.
Yet as promising as these developments are, one worry remains: that new partnerships are still rooted in old power dynamics. For example, community members are often asked to act as consultants and subject matter experts, but they aren’t financially compensated. In many cases, after an initial focus group or survey, patients are excluded from actual priority-setting and decision-making. Even the increasing numbers of articles and guidebooks focused on hospital-community collaboration fall into old patterns: written about working with community members, rather than written with them.
These disconnects aren’t altogether surprising. Bringing together the worlds of health care and community empowerment requires merging distinct and complex cultures. On the one hand, you have a healthcare industry driven by business objectives and a hierarchy based on academic and clinical expertise; on the other, you have a diverse set of patients and organizations that, in applying experience from their own lives and communities, seek to democratize what health is and how it’s delivered. Indeed, bringing these two worlds together requires an entirely new set of tools and best practices.
So how can we make moves toward embracing this new way of thinking?
To truly infuse community voice into our healthcare system, it’s not enough to simply “partner” at the level of conversation. More specifically, institutions must be willing to share three things: responsibility, by, say, sitting jointly with community members at the table and receiving feedback, even when it’s uncomfortable; power, by acknowledging patient leadership and co-designing processes in a way that ensures patient voice isn’t just an afterthought; and funding, by developing funding mechanisms for community health that are truly driven by patient priorities.
Despite these hurdles, institutions are stepping forward to shake up the status quo. On the other side of the city from Centro Sol, Kaiser Permanente and Bon Secours Health System have teamed up to launch Future Baltimore, a place-based initiative addressing upstream determinants of health based on what community members would actually like to see. The initiative has adopted a “nothing about me without me” approach to the work. Or, put another way, it places residents at the center of conversations about local issues, including health services for formerly incarcerated individuals re-entering neighborhoods and transforming a shutdown library into a vibrant community resource center.
“Nothing about me without me” is a powerful reminder that, in the end, the most important judges of the success of hospital-community partnerships are the patients. Truly participatory decision-making ensures that our healthcare system—fueled by both public and private dollars—is accountable to its consumers not only in terms of delivering high-quality treatment, but also in terms of working toward a reality in which that treatment isn’t needed in the first place. More than that, shared leadership must be non-negotiable if we ever hope to fundamentally transform our healthcare system.
Pushing against the decades-old medical model requires creativity on every front, and the ideas with the most impact are likely to come from those with the most to gain from seeing improved health—the patients themselves.