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. After reviewing the collection of interviews, CFAH Founder and President Jessie Gruman noted, "the unity of opinion, despite the range of unique stakeholder aims, is impressive.”
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 the physicians we interviewed:
- Rushika Fernandopulle, MD—Co-Founder and CEO, Iora Health, Las Vegas, NV, and Hanover, NH
- Marc Pierson, MD—retired Vice President of Clinical Information and Quality, PeaceHealth's St. Joseph Medical Center, Bellingham, WA
- Daniel Z. Sands, MD, MPH—Health IT Consultant, Zev Enterprises, Newton, MA
- Steven E. Weinberger, MD, FACP—Executive Vice President and CEO, American College of Physicians, Philadelphia, PA
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?
FERNANDOPULLE: It is important to start with the premise that for an individual their goal is health, not health care. Health care is only one of many means to achieve health. Our behaviors, including lifestyle, are critical. Our decisions about health care and how we use and navigate it are important too.
PIERSON: ...Defining engagement is very much the product of who is doing the defining. If from within health care, then the key question becomes for what or for whom is "patient" engagement primarily intended to benefit?...I would prefer thinking of "people" engaged in their health and health care. However, I do like that this definition recognizes that both health and health care require people's active participation...Medical care is not the same as health. Health is much more than the lack of illness...We need to incorporate more perspectives from real people and ask them what they need to become more engaged with their medical conditions, their health, and their well-being.
WEINBERGER: ...There are both macro and micro levels of patient engagement. The micro level is what happens at the point of contact between doctors and patients in the patients' health care. The macro level is involvement of patients generically in making the system better in practice and organization at local, regional, and national levels...As we talk about redesigning the system, it's important to get patients' input in a serious way, not just the clinician's viewpoint of what the patient thinks.
CFAH: If a person is engaged in their health and health care, what difference does that make? To whom?
FERNANDOPULLE: Being engaged in our health and health care makes the most difference to us as individuals. Our actions need to reflect our own goals, our values and preferences, and what we are willing and able to do to achieve them. But often we do need help and support to reach our goals and to take action. The notion that a doctor or health care professional can manage your health is foolish. At most, we only see an individual for a couple of hours per year. So being engaged has to matter most to individuals and the system needs to align itself with that aim. Some in the provider community don't buy in to this perspective. But really that doesn't matter. Decisions about health mostly take place outside health care.
PIERSON: Typically, engagement is defined by health care insiders as paying attention to what you are told to do and being compliant with "orders." The current non-system of health care plays into this by being disconnected and difficult for people to understand or navigate...
Health care offers technology and knowledge but is set up for the people that work inside it, not for its clients' ease, safety, or affordability. Payment for health care is based on professionals managing clients' ill health, not on engaging with people to prevent illness, create well-being, or for self-care of illnesses and chronic conditions.
People are scared of what they are not allowed to know or understand. They don't want to be more dependent. They don't want to end up going to an emergency room. Their primary relationships are with family, friends, neighborhood, and community — not professional service providers.
WEINBERGER: I think it makes a difference in that health care is not delivered to someone; it's delivered with someone. It's a partnership.
CFAH: What do you see as the greatest barriers to patients being more effectively engaged in their health?
SANDS: There are three main barriers.
- Lack of access to the practice and lack of information, which has been the rule, not the exception. The opacity of the health care system and amount of friction one has to overcome to get care are big barriers. This isn't going to get better soon.
- The cost of health care for many people.
- General and health literacy.
WENBERGER: I think one of the biggest barriers is time. For patients to be able to participate more fully in their care they need to have better understanding of their own health care issues. The problem is that discussing these issues is the responsibility of the health care team. We have to communicate more effectively than we do now. Because of time constraints, health care professionals aren't doing what needs to be done to help patients engage. Clinicians need to be both a catalyst and a resource for engagement. Because of time constraints and churning of patients through the system, it's impossible to communicate the kind of information patients need to engage and to have patients ask the questions that are so critical.
Another barrier is access to care. Patients can be engaged in their care—they may want to be, but this requires bi-directional communication that goes beyond the face-to-face visit, and our system is not aligned to do this yet. The payment system does not yet reward effective communication and the time spent doing it.
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.?
SANDS: Clinicians have to think differently about health care...Sure, I can tell you to come into a visit or prescribe medication, etc., but none of this will make a difference unless the patient participates.
This is the first installment of our interview highlights series. Full interviews and the results of our study are available in our report: Here to Stay: What Health Care Leaders Say About Patient Engagement.