By Emma Opthof, Center for Health Care Strategies
As health systems continue to test innovative approaches to improve health care quality, the delivery of person-centered care — defined as care that is guided by individuals’ preferences, needs, and values — is key for health care system transformation. The Health and Retirement Study, a longitudinal survey of Americans over age 50, asks, “When thinking about your experiences with the health care system over the past year, how often were your preferences for care taken into account?” Researchers from the Center for Consumer Engagement in Health Innovation (CCEHI) and the LeadingAge LTSS Center @Umass Boston analyzed responses to this question in a recent report on person-centered care to better understand how aging adults experience care, if their preferences are acknowledged, and whether their experiences vary by race and ethnicity, wealth and income, and/or insurance status.
The Playbook spoke with Marc Cohen, PhD, CCEHI Research Director and Co-Director of the LeadingAge LTSS Center @UMass Boston, and Ann Hwang, MD, former CCEHI Director and practicing primary care physician, to learn more about their research findings and how health care systems can become more person-centered.
Q: How would you define person-centered care and its impact on older adults with complex health and social needs?
A: M. Cohen: The essential element of person-centered care is that you are taking into account an individual's values and preferences in their care. It's a very holistic approach. It's not based on treating a particular condition, but the entire person, and involves actually listening to what the patient feels matters most to them and what they need.
A. Hwang: As we think about people with complex needs — especially older adults — the more complex their needs are, the more important person-centered care is, because they need a partner inside the health system who can help them navigate it and can translate their values into care. Health care is always about trade-offs and balancing risks and benefits, but even something as simple as doing an unnecessary test means losing time that you could have spent doing something much more meaningful, not to mention that that test could then lead you into a vortex of other tests and procedures that don't always benefit the patient and their well-being.
Q: As you conducted this research, what jumped out as the key findings?
A: M. Cohen: Even when we held a lot of different variables constant — health status, income, et cetera — race and ethnicity came out as the strongest predictors. People of color are 2-2.4 times more likely to report that when they interact with the health system, their needs and preferences are not taken into account. Many rarely or never feel like they're heard and as a result, they were less likely to engage with the health system after having this experience. I think it's easier to say people are fearful or distrustful of the health care system, but our study has shown that there's a whole other important dimension relating to disparities and this is of people who don't feel like they're heard or listened to.
A. Hwang: It shows a tale of two health systems — people's experience of health care and how they’re treated is just fundamentally different based on their race or ethnicity. We have a ton of work to do to unpack why that is and to start changing that.
Another key finding is that I found it helpful to finally have a benchmark that puts some numbers behind the concept of person-centered care. We've been talking about person-centered care for a long time, but this helps us understand where we are as a country and where we need to go, and gives us a way to measure our progress.
Q: How does consumer engagement fit into person-centered care?
A: A. Hwang: They're very much intertwined. At the clinical level, there's lots of opportunities to increase engagement. I love the construct that Dr. Maren Batalden and colleagues put forward talking about health care as a service, not a good, which is inherently co-produced. That framework of health care as a partnership is really fundamental and very helpful in thinking about how to steer care in a direction that's more person-centered. Involving patients, families, and community members at the organizational level in designing systems of care can also help to create the conditions that allow person-centered care to happen.
M. Cohen: The notion of consumer engagement helps to shift the underlying power dynamic between the patient and the provider. As a patient, you have to gain a certain comfort level in expressing your views and putting forward what your preferences and values are, and part of that is feeling authentically engaged in your own care.
Q: How can we make telehealth more person-centered?
A: A. Hwang: The things that matter in in-person care also matter in a virtual setting: having enough time for the appointment, making eye contact, being present. It becomes even more important to try not to monologue, to pause for questions and use teach-back. You have to make sure that the person that you are engaging with heard and understood what you said.
Accessibility also takes on some new dimensions. Captioning, for example, is particularly important given the high rates of untreated hearing loss among older adults. Be mindful about privacy issues. If your patient is at home with other people or if they're getting assistance from a family member to log on, just recognize that your patient might not want those other people to be in their business.
Some disparities can be exacerbated by telehealth and we need to have some ways to address those, i.e., providing equipment, connectivity, and training or support to use telehealth. We also should recognize that telehealth doesn't solve all problems — you still need to ensure that there's access through other modalities.
M. Cohen: Something else that’s important is structuring telephonic conversations to leave room for the provider to simply listen and not do all the talking. On Zoom, it’s easier to see people’s expressions, but you should be deliberate and leave a precise amount of minutes on a phone call for the patient to ask questions or share concerns.
Q: What are the changes health systems can make to become more person-centered?
A: M. Cohen: This work raises questions about whether or not providers have the training to know how to elicit people's opinions. How do you get people to really tell you what matters to them? They may be uncomfortable sharing certain issues, but those may be the most salient things.
In the paper, we also mentioned changing the architecture in which all of this occurs, which includes things like patient advisory councils. You have to build a culture that has as many of the pieces in place as possible — at the ground level, at the organizational level, and hopefully at the policy system level. It’s going to take efforts at all three of those levels to get the results that we want.
A. Hwang: There are things you can do as a clinician in an exam room or virtual exam room with the individual patient or family that supports person-centered care, and there’s also collective action that we can achieve through policy change through shifting the broader structure of the health care system. And I think the need for both individual and collective action makes this difficult, but also means that there are lots of opportunities for all of us to contribute to the solution.
For example, there’s this core concept from the independent living movement of the dignity of risk, which underscores that people should have the right to live the life that they want to live, even if that sometimes that makes us health care system folks uncomfortable. This video series with Dr. Bob Master gives more context around this philosophy. Embracing this means changing the mindset and practices of individual clinicians, but also the culture and practices of health care organizations.
Q: What advancements are needed in the overall health care system to support more widespread adoption of person-centered care?
A: A. Hwang: Training and changing some of what happens within the clinical encounter is one piece of it. The age-friendly health systems movement is rapidly scaling efforts to put “what matters” at the center of patient care. I think the other piece is payment and quality measurement — for better or for worse, this is what makes the health care world go round. Thinking about how these things could be used to support person-centered care rather than to thwart it is really important. Payers need to recognize that in many cases you can't do this work in 15-minute increments, so what kind of payment model can support the trust and relationship building that's necessary for person-centered care? And then certainly at the broad policy-making level, building person-centered care as a goal into programs across the board would be tremendously valuable.
M. Cohen: We need to make sure that we're measuring the things that matter most to people in the system. In this society, if you don't measure it, it's not important. And if you're measuring the wrong thing, you're not going to get to where you want to go. Focusing on those measures that matter most to people and that they care most about is critical. It gets people to think about the care they're providing in a different way and for those receiving care, to experience it in a different way.