In July, CFAH released our final report on the state of patient engagement in the U.S., Here to Stay: What Health Care Leaders Say about Patient Engagement, a collection of interviews with 35 key informants from seven groups with an interest in patient engagement: health care consultants and contractors, patients, clinicians, employers, health plans, community health leaders, and government officials.
We asked health care leaders to define patient engagement, describe behaviors associated with engagement, explore the impact of patient engagement on various stakeholders and the barriers that hinder people's engagement, and share interventions to overcome engagement barriers.
Six key themes emerged from our discussions:
Engagement is active: Informants agreed that the core of patient engagement is individuals' active participation in their health and health care.
"Engagement goes hand in hand with empowerment. A disempowered person shrugs hopelessly and says, 'There's nothin' I can do about it.' That's powerless, and somebody with no power sees no reason to be engaged, so they treat health care like a car in a car wash: they roll up the windows and get things done to them. In contrast, an empowered, engaged person says, "There are things I can do," and they get a move on." – Dave "e-Patient Dave" deBronkart – Patient Advocate and Author, Let Patients Help…more
The health care system doesn't make engagement easy: Even the most active, capable individuals require support from other people and health organizations to engage in their health and health care.
"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." – Art Franke, Chief Science Officer (respectively), National Kidney Foundation of Michigan, Ann Arbor, M…more
"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." – Amber Haley, MPH — Project Manager and Epidemiologist, Virginia Commonwealth University Center on Human Needs, Richmond, VA…more
Everyone benefits from engagement: Patient engagement makes a positive difference for all seven stakeholders: patients, clinicians, employers, health plans, community health programs, governments, and health care consultants and contractors.
"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…" – Candace Goehring – Aging and Disability Services Administration, Olympia, WA…more
"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… 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.'" – Jean Moody-Williams, RN, MPP – Group Director, CMS Quality Improvement Group, Baltimore, MD…more
Engagement is demanding, and many are unprepared: Many consumers have only a partial understanding of what it takes to be actively engaged and how their engagement would make a difference in their health and health care. Many are also unprepared to be active in their care because they lack the basic building blocks of engagement (such as health literacy).
"Traditional health care has asked the patient to be the passive recipient of services to and for them. In a new patient- and family-centered model, patients and their family are invited to become more active. For someone who has always been told to do what the doctor says, without opportunity for input, this can be startling. When all of a sudden your doctor starts to ask you what actions you'd like to pursue to solve your health care problem, you may respond, 'That's what I pay you to do!' Explaining why their involvement is essential and setting the context for this change in relationships helps invite more participation. To build confidence with new roles, patients and families need encouragement and support for these expectations and new behaviors." – Mary Minniti, Program and Resource Specialist for the Institute for Patient and Family Centered Care in Bethesda, MD…more
Partnerships are required: Patient engagement is a shared responsibility that requires ongoing partnerships among different sets of stakeholders.
"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." – Steven E. Weinberger, MD, FACP—Executive Vice President and CEO, American College of Physicians, Philadelphia, PA…more
It's like the Wild West: In part due to the depth and breadth of behaviors that represent engagement, no single strategy can boost engagement. Each stakeholder representative noted that they use a variety of interventions to encourage patient engagement. However, their efforts to promote engagement often lack a systematic approach to ground their investment.
"Two areas that I have been hearing more about are tools and products that use theories from behavioral science, like gaming and Prochaska's Stages of Change theory, to assess a person's readiness to change. Both of these fields rely on engaging users in very small, doable steps, with little points of progress, and either try to meet the person where they are or make the process of change more enjoyable/fun…" – Laurel Pickering, MPH, President and CEO, Northeast Business Group on Health, New York, NY…more
"Health coaching and disease management programs work well if done in person. I don't know of any employers that are truly happy with engagement results and participation rates from telephonic support. In-person support lets coaches discuss changes in diet and other areas needed. Face-to-face seems to have the greatest impact in terms of health outcomes and costs." – Michael Vittoria, Vice President, Corporate Benefits, MaineHealth, Portland, ME…more
"Some of the best interventions are those that help people set goals for themselves and then let them get prompts for things that they may forget to do, such as get information, return to the portal to see their lab tests, or schedule appointments. Providers need synchronous prompts so they can, for example, call the patient on their quit-smoking date and offer encouragement. In five years, all this may seem quirky because we've already achieved it." – Thomas L. Simmer, MD – Senior Vice President and Chief Medical Officer, Blue Cross Blue Shield of Michigan, Detroit, MI…more