The Center for Consumer Engagement In Health Innovation (the Center) at Community Catalyst released “In Their Words: Consumers’ Vision for a Person-Centered Primary Care System,” at a special event in Washington DC. Based on nine focus groups of low-income consumers with complex health and social needs, the report levels a pointed critique at an impersonal primary care system and also suggests a practical, forward-thinking prescription for transforming that system.
“In Their Own Words” focus groups asked people directly about their experience with primary care and whether they would want that care to address non-medical aspects of their lives (e.g., housing, transportation, food security) that make a difference to their health and well-being – what are broadly known as social determinants of health.
“This report first and foremost underscores that our primary care system is not well organized around what consumers who are low-income say they need and want,” said Ann Hwang, MD, the director of the Center and a primary care provider herself. “The system, with hurried visits, large caseloads and high levels of paperwork, frustrates clinicians, as well, complicating the ability to deliver high quality, whole person care. The good news is that despite their cynicism and mistrust, consumers are very clear about what a better primary care system could and should look like. They remain hopeful, and their ideas are sweeping and could fundamentally restructure how primary care is delivered.”
“In Their Words” notes that many see “a health care system that is financially driven, leading to short and impersonal visits.” It is a system that consumers say is designed to “churn them through as quickly as possible and move on to the next person.” In the words of focus group participants:
“So we’re looking at a health system as more like a factory type of a thing….like a conveyor belt where they are milking the cows.”
“[Doctors] are so busy, they don’t have the time to actually check you out. Right? Let alone to talk to you about food and your house and everything else. They’re lucky if you can get down to what you’re in there for.
“The primary problem is that [healthcare] is a business.”
Despite their disappointment in the system, focus group participants – who included low-income older adults, people from communities of color, and others with complex health and social needs – were nevertheless able to articulate several key elements of a more person-centered primary care system.
Consumers want a long-term relationship with their primary care provider and they welcome broader, deeper conversations about both medical and social needs, undertaken with patience and empathy.
“[I want someone who will] take the time to listen to the patient, to know exactly what they’re going through. And, then not only that, but to make sure to explain to the patients, show the patient that you’re caring, and the information about what their problem is, and show them that you’re doing something about it.… Basically, I mean just showing…true interest and taking care of what the problem really is.”
“I would feel…a comfort factor knowing that somebody cares about me… Yeah, I would feel absolutely embraced [to have this kind of relationship].”
They expressed a desire for a navigator to help them make sense of and guide them through an imposing and confusing health care system.
“I think there’s one place that they should have [with] multiple counselors. And you’d be assigned to a particular counselor….so that every time you have something they may be able to help you with, you can talk to that one person and create that bond….”
They are enthusiastic about having a single place, where their primary care and social needs can be addressed under one roof.
“It would be heaven to have a one-stop shop. You go to your primary care (provider), you tell him what you need and he sees what you need by asking you the correct questions… And, it helps you, it makes you more at peace with yourself, more sound of mind because you don’t have to worry about it now and… you’re going to be healthier. …a lot of what is making you ill or keeping you ill or making you worse is lifted off your shoulders.”
They want providers who are culturally sensitive and can relate to their own life experiences and struggles, particularly around socio-economic and non-medical challenges.
“So to be given information hopefully, of course, in your own language, in Spanish. We speak English, you know, some, but sometimes medical terms are difficult… So because of that, one tends to look at the Hispanic doctors so that you have that conversation in Spanish, but it’s difficult.”
“[I would want] somebody that knows about financial [matters], and that has been through financial problems in their life.”
At the gathering in Washington, DC, a panel of experts responded to the report, including Damon Francis, Chief Clinical Officer at Health Leads; Hoangmai (Mai) Pham, Vice President at Anthem; Tara Oakman, Senior Program Officer at the Robert Wood Johnson Foundation; and Marjorie Waters and Wendy Thomas, a community organizer and a community leader, respectively, with the Rhode Island Organizing Project.