When CFAH interviewed over 35 health care stakeholders to gather perspectives on patient engagement, six overarching themes emerged:
- 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.
Our informants represented seven key groups: patients, clinicians, employers, health plans, community health programs, governments, and health care consultants and contractors. Each participant was asked eight questions about defining patient engagement, identifying engagement behaviors, measuring its impact, exploring its barriers and what is needed for it to thrive.
Here are some highlights from our interviews with state and federal government representatives in our Here to Stay: What Health Care Leaders Say About Patient Engagement report:
- Cindy Brach – Senior Health Policy Researcher, Agency for Healthcare Research and Quality, Rockville, MD
- Candace Goehring – Aging and Disability Services Administration, Olympia, WA
- Jean Moody-Williams, RN, MPP – Group Director, CMS Quality Improvement Group, Baltimore, MD
- Lygeia Ricciardi, EdM – Former Director, Office of Consumer eHealth, Office of the National Coordinator for Health Information Technology, Washington, DC
CFAH: If a person is engaged in their health and health care, what difference does that make? To whom?
BRACH: …It matters a lot to those who interact with the engaged patient…How clinicians and other professionals feel about engaged patients varies a lot. Some feel it makes their job harder: They have to negotiate and recognize different preferences. This makes it more complex to deliver care. On the other hand, clinicians want patients to engage because they understand that nothing will happen if they don't. They know the statistics about adherence and health behavior. The understanding is growing that you need to partner with patients to get better outcomes.
GOEHRING: It makes a huge difference for people who change their behavior and improve their health. It also makes a profound difference to the team working with an engaged individual. Medical professionals also see improved outcomes with people engaged in healthy activities. In our scope of practice, caregivers are also affected by engagement. They need to know how to contribute to engagement and that those actions can make a positive difference in a person's health. It reaches beyond the person with the chronic condition…
MOODY-WILLIAMS: I think it makes a difference to the patient and the clinicians providing the care but also to the family and the community at large. Everyone on the care team is impacted when the patient is engaged. The most significant benefit is to the patient because what they value is considered. Being able to talk about what's important and having that become a part of a care plan is critical. Being able to receive information they didn't know about in a manner they can understand and use is also important…
Since patients don't live in a vacuum, we must also involve the community in which patients live, work, and play. Community resources must be readily available to meet the needs of the population they serve. Also, as we begin to have patients and families engaged in their care and talk to peers and extended family members, they begin to model engagement to others. We are looking for "engaged communities."
CFAH: What are some interventions that you've heard of that show promise in helping people to engage in their health and health care?
RICCIARDI: There are many examples. One is Open Notes…It's a fabulous project because it puts to rest a lot of the fears that providers and patients have about engagement and sharing information. I'm interested in the "notes" part, but more interested in the "sharing" part…
I'm also excited about the general ubiquity of technology and how the growth of mobile phones and people's access to the Internet puts their health in their hands. People use the Internet differently when they use their phones. They feel liberated to ask real-time questions and personal, sometimes even embarrassing, questions on the personal device. The democratization of information outside of health care will result in greater engagement outside the health care context…
I'm also interested in seeing health services migrate out of the traditional health system into retail clinics at Walmart and CVS, for example. I think it's healthy to have some competition in the system and more convenience for customers. There are a lot of companies and organizations not traditionally in the health care sphere – including phone companies, for example – that are getting into the health care act. The boundaries between health and other services are beginning to blur.
CFAH: What do you see as the greatest barriers to patients being more effectively engaged in their health?
BRACH: One is the structure of the 10-minute visit with the doctor. It's difficult to have the time to process information and feel you can ask questions when the clock is ticking. The structure of hospital care is equally problematic, where you capture a glimpse of the attending physician in lightning-speed rounds.
We seem to be moving toward a team-care system where the patient has multiple individuals they can interact with. This has the potential to break either way. It can be empowering in that it gives patients more attention and time. If done poorly, however, it will result in fragmented, confusing care. We need to be mindful about how team-based care gets implemented.
The culture of medicine is also a big barrier. Most doctors are trained to obtain histories, diagnose, and prescribe treatment – they don't even recognize that there are decisions to be made. They need to recognize that patient preferences vary and to create a space in which to talk about options with their patients.
But there are also barriers on the patient side. Being an engaged patient takes a lot of time. A lot of people don't feel they have that luxury. It's not until they are really sick that it is worth investing the time to be an educated health care consumer.
GOEHRING: We must always listen to what the patient has to say and what their health needs are. Some people aren't ready to engage in health care. Some people are involved in complex personal issues, such as eviction and abusive relationships. They can focus only on those issues, and health becomes secondary.
RICCIARDI: A lot of people don't necessarily understand how they are empowered to make changes in their health, and how their behavior will affect them. Ours is in many ways still a paternalistic system. We are still struggling to find a model in which patients dictate the direction. People aren't used to questioning the medical establishment, and they need to be encouraged to push back in a constructive way, to tell about personal goals as well as provide information about their bodies and their behaviors. At the same time we all need to take greater ownership of our own behaviors on a daily basis – they impact our health more than anything else.
CFAH: Some public officials are still not persuaded that engagement is important in achieving better outcomes. What would convince them PE is important – i.e., evidence, examples, regulation, programs – or would persuade them to pay attention to/change their own behavior and work to change their institution's behavior to support PE?
MOODY-WILLIAMS: …A number of things are having an impact on attitudes; value-based purchasing and patient experience being tied to payment drives interest. But I think it is bigger. Providers genuinely want to engage patients and families to provide better care and to achieve success in this fiscal environment.
There will be multiple factors coming together to drive this change. There is a genuine desire to become learning systems and get patients involved in the transformation. The change won't take place because of any single thing. Different things move different people. The important thing is that we all move toward a system more inclusive of the consideration of patients and families.
Full interviews and the results of our study are available in our report: Here to Stay: What Health Care Leaders Say About Patient Engagement.