In early February, Community Catalyst’s Center for Consumer Engagement in Health Innovation (CCEHI) published a series of video modules, Re-envisioning care for people with involved disabilities, with the goal of introducing clinicians and healthcare leaders to the idea of person-centered care for those with complex health, social, and functional needs.
A person-centered approach prioritizes individuals’ goals and preferences in all aspects of care. Care delivery is designed around the whole person, their needs, and their convenience, rather than the delivering institutions’ priorities. Person-centered care is one of the five principles of complex care laid out in the Blueprint for Complex Care.
As momentum builds across the country to shift traditional healthcare delivery models toward person-centeredness, CCEHI is working to ensure that the voices of consumers are at the forefront. In the video series, both consumers with involved disabilities and providers with experience working in person-centered care models talk about what person-centered care means to them and how it has affected their lives and practices. “Our hope is that these videos will contribute to more clinicians and healthcare leaders seeing how patients can truly be partners, and more recognition of the expertise of patients and caregivers in their own conditions and their own health,” said Ann Hwang, director of CCEHI.
As the video series explores, the demand for person-centered care came in large part from people with disabilities who were part of the disability rights and independent living movements. “The most daunting obstacle [to the health and autonomy of people with disabilities] really was the medical care system,” said Community Catalyst Senior Fellow Robert Master, founder of the Urban Medical Group and the Commonwealth Care Alliance, in the opening video in the series. “The fact is, medical care was designed more for the priorities and needs of those providing the care than those receiving the care.”
The video series covers the history of the disability rights movement and provides an introduction to person-centered care, the culture change and primary care redesign efforts that are necessary to move toward person-centered care, and the importance of home-based care for people with complex health and social needs.
The population highlighted in the series, people with involved disabilities, are those whose functional needs impede their ability to perform aspects of daily living like dressing, eating, or toileting. This population is particularly at risk for medical complications that can result in an expensive and traumatic cycle of hospitalization. Compared to the overall population, individuals with disabilities are also more likely to be unemployed and experience certain chronic conditions, and many are served by the Medicaid and Medicare programs.
“As a clinician, I felt poorly prepared to address a lot of the issues that come up,” said Ann, “whether they’re related to clinical conditions that are more common, or things like durable medical equipment—how do you get the right power chair? What kind of home adaptations are beneficial? But there’s also a lot of commonality with how we relate to other populations with complex health and social needs, including a need for creating relationships of trust and respect between clinicians and consumers.”
Like other complex care models that serve people with complex health and social needs, person-centered care for people with involved disabilities respects consumers’ expertise and meets them “where they’re at.” Person-centered care, said Ann, “is about asking rather than telling: how do you do this at home? When this happened before, what did you do to address the issue? What have you learned as an expert in your own health that has worked for you in the past?”
The ability of a primary care practice to make the shift to person-centered care requires culture change, but also operational and systemic redesign. “There are just some very fundamental limitations in the healthcare system,” said Ann. “As clinicians we are sometimes limited by these structures, but it is incumbent on us to work in partnership with consumers to try to change the system.”
For example, though a study from The Commonwealth Fund found that fewer than 12% of housebound people with disabilities received primary care at home, home visits can be game-changing for both consumers and clinicians. “When medical providers come into your home, you can show them firsthand a slice of your life: the things that you’re doing at home, the kinds of equipment you need,” said Dianna Hu, board member of the Boston Center for Independent Living, in one of the video modules.
Redesigning primary care to be person-centered also often means redesigning the structure of the care team. Person-centered care teams are coordinated, interdisciplinary, and put the person receiving care at the center. Though such a restructuring might seem complicated, Ann noted that there are important first steps that clinicians and healthcare leaders can take. “There’s so much value in asking—whether individual patients or the patient population as a whole—what are the things we can do better?” she said. “And then thinking systematically about building stronger consumer feedback into practice.”
“It would be most helpful if medical practitioners could treat their patients more like partners,” said Florette Willis, program manager at the Boston Center for Independent Living, in one of the videos. “Find out what they want and what their needs are. Earning the trust and respect of that person will help you to partner with that person… Just being two human beings exchanging experiences and working together as a team is what will make the difference—it’s that teamwork.”
Organizations across the country are increasingly recognizing that care delivery models that prioritize the needs of consumers have the potential to not only reduce costs from avoidable hospitalizations and emergency room visits, but also provide better quality care for consumers and reduce frustration and burnout for providers.
“The challenge is, how do you scale person-centered care to make it the norm rather than the shining example that everyone points to?” said Ann. “Hopefully one day it won’t even be newsworthy because it will be what everybody does. That, I think, would be success.”