Over the past 18 months, CFAH, with support from the Robert Wood Johnson Foundation, interviewed over 35 health care stakeholders to gather their perspectives on patient engagement. Our informants represented seven key groups: patients, clinicians, employers, health plans, community health programs, governments, and health care consultants and contractors. We asked each participant eight questions about defining patient engagement, identifying engagement behaviors, measuring its impact, exploring its barriers and what is needed for it to thrive.
Six overarching themes emerged from our discussions:
- Engagement is active.
- The health care system doesn't make engagement easy.
- Everyone benefits from engagement.
- Engagement is demanding, and many are unprepared.
- Partnerships are required.
- It's like the Wild West.
Here are some highlights from our interviews with these community health leaders:
• Roseanne DiStefano and Joan Hattem Roi — Executive Director and Assistant Executive Director (respectively), Elder Services of the Merrimack Valley, Lawrence, MA
• Lisa Ferretti, LMSW — Director, Center for Excellence in Aging and Community Wellness, University at Albany School of Social Welfare, Albany, NY
• Amber Haley, MPH — Project Manager and Epidemiologist, Virginia Commonwealth University Center on Human Needs, Richmond, VA
• June Simmons, MSW — Founding President and CEO, Partners in Care Foundation, San Fernando, CA
• Linda Smith-Wheelock and Art Franke — Chief Operating Officer and Chief Science Officer (respectively), National Kidney Foundation of Michigan, Ann Arbor, M
CFAH: Here is the CFAH definition of patient engagement (PE): "Actions people take to support their health and benefit from their health care." What's missing from this definition? What would you add, subtract, or word differently?
FERRETTI: I'm not sure I would change anything about your definition as it is action-oriented. When I think about patient activation, I consider that when people are activated they are doing things in a positive way to change their circumstances. I think activation helps people to become engaged.
SIMMONS: When I think of patient engagement, I think of a partnership where people work together to figure out what the patient wants and how to support the process. Engagement is the knowledge base, working through the decisions and helping people to become full partners in their health outcomes.
SMITH-WHEELOCK: Knowledge is power. For patients to advocate for themselves—rather than the top-down model—they need to feel like a participant in their care; they need to have the tools and knowledge to do this, whether a person is pre-diabetic or has kidney failure or diabetes.
CFAH: What are some interventions that you've heard of that show promise in helping people to engage in their health and health care?
DISTEFANO & HATEM ROY: We are working on health literacy issues. Different cultures/languages and the ability to read medical information can be a real challenge for many that we serve...And we find that in these cases, people can be afraid to ask for what they want. We need to meet with them where they are and create a situation where they feel safe. The oldest generation we serve sees the doctor as the end-all and be-all. A big part of our job is helping them communicate with their doctor and to advocate for themselves.
FERRETTI: I would say that we probably focus our efforts on interventions that empower people to make the changes they decide are important to them. This includes interventions about decision-making, treatment, and preventive care. Also, interventions that are less about increasing knowledge and information and are more about what to do with that knowledge. I think having greater access to good clinicians and facilities is a must, but if those are available, then empowering individuals is perhaps more important.
HALEY: We find a lot of issues with lack of trust and problems with communication in our communities. Doctors say they can't be sure the person understands their instructions, but usually this isn't as much because the patient can't understand, but that the trust and openness in communication does not exist between the doctor and the patient...If there isn't trust, it can really hinder good care. People won't disclose and the doctor can't tell whether the person understands or is even willing to do stuff.
CFAH: What do you see as the greatest barriers to patients being more effectively engaged in their health?
DISTEFANO & HATEM ROY: Not realizing what options they have. It's so basic. This older generation—the one that is now aged 80 to 100—is not used to having choices about their health care and is often not comfortable questioning medical authority...You need to think about these barriers by age, cultural background, and other factors to really understand the barriers that the individual sees...It's important to remember that taking the medication prescribed is not always an issue of non-compliance, but may be an issue of being able to afford the medications or managing them.
FERRETTI: I think the barriers vary by population...In the health disparities communities that we work in, the fragmentation of people's lives really gets in the way. People may want to be involved but they are working one or two jobs, they have child care issues, transportation problems, etc. This makes it hard for many people, and so it's challenging to build and access a supportive community of care. When we conduct focus groups, everyone wants to do better, make healthy lifestyle changes, but when you are working more than one job and your kid is sick, it can be tough to focus on your own health as a priority.
FRANKE: Poverty. Literacy. Health literacy. Fear. Mistrust. The system is becoming more complex, and people's ability to understand their role in it—what they need to do and how they need to act—is low in the populations we are trying to reach.
HALEY: A fragmented service environment, discontinuous care, lack of primary care providers, lack of insurance, lack of trust for many reasons, communication problems. Because of the lack of insurance, we see delayed care and people seek care at the emergency room. For low-income patients, it's not just about compliance; it's about whether people are able to comply. People's lives are complicated in low-resource, high-stress environments.
SIMMONS: I think it's hard for people to understand that it's possible to make a difference in their health outcomes. I don't know if it's shyness, or culture (such as where they don't talk about these personal matters), the remoteness of solutions from their world, the time and thinking it takes to implement the solutions, the barriers like distance and transportation, or natural ambivalence that get in people's way. We continue to learn and need to discover better how to use invitations that bring such programming to the tipping point where these concerns go viral and you can bring people in.
SMITH-WHEELOCK: Even with the Chronic Disease Self Management Program, which is so adaptable to the needs of participants, we find that the low level of understanding of health and the health care system is shocking. And poverty means that some of the simplest things, like transportation, are real barriers. For people who have few resources, getting health care presents many complications. It's no wonder to me that people just wait until a crisis develops and end up in the ER.
CFAH: How would you characterize the general attitude of your colleagues/constituents toward patient engagement—its importance, the extent to which it is their concern, etc.?
FRANKE: The system assumes that the public has a certain knowledge threshold. It doesn't recognize that people below the threshold don't know what to do or how to make use of their health care and so can only wait for a crisis. Perhaps we need some patient advocacy effort to mediate this gap and help them to get the care they need. This is becoming ever more critical as the system becomes more complex.
SIMMONS: I think there is plenty of lack of buy-in. There are still a lot of people who think you just do things to people—give advice and information. It helps to measure outcomes from our programs, from the activation vs. education approach, and to publish them.
SMITH-WHEELOCK: We're better off than we were 20 years ago. Some doctors are coming in who are being taught to focus on patients. In the medical system, it's still very top-down. The talk is about how patient engagement will help a bit. How doctors think about patient engagement is very different from how we do. They think that if they set up a kiosk on the way out of the hospital and asked if you liked your care, then they have engaged you.
I see some movement, but until we see that the clinicians and the system recognize that for chronic disease, people's health care is not just what happens in their doctor's office during that 10-minute consultation.
Full interviews and the results of our study are available in our report: Here to Stay: What Health Care Leaders Say About Patient Engagement.