For the past several weeks, we have shared perspectives on patient engagement from diverse health care stakeholders: how they define it, measure its impact, explore its barriers and what is needed for engagement to thrive.
We interviewed over 35 people representing seven key groups: health care consultants and contractors, patients, clinicians, employers, health plans, community health leaders, and government officials. Our report, Here to Stay: What Health Care Leaders Say About Patient Engagement, uncovered six overarching themes:
- Engagement is active.
- The health care system doesn't make it easy.
- Everyone benefits from engagement.
- Engagement is demanding, and many are unprepared.
- Partnerships are required.
- It's like the Wild West.
The final post in our series features health care consultants and contractors Alexandra Drane, Founder, Chief Visionary Officer and Chair of the Board at Eliza Corporation in Danvers, MA; Mary Minniti, Program and Resource Specialist for the Institute for Patient and Family Centered Care in Bethesda, MD; Gordon K. Norman, MD, MBA, Chief Medical Officer for xG Health Solutions in Columbia, MD; and Janice M. Prochaska, PhD, President and CEO of Pro-Change Behavior Systems in South Kingstown, RI.
Here's what they had to say:
CFAH: Here is the CFAH definition of patient engagement: "Actions people take to support their health and benefit from their health care." What would you add, subtract, or word differently?
DRANE: The responsibility of/opportunity for the health care system to inspire people to want to take these actions [is missing]. I would consider taking out the word "patients" from the title. Instead, consider something like "The end result of a collaborative effort whereby the health system makes healthy behavior feel desirable and attainable, and as a result, individuals get fired up about their health."
MINNITI: The definition is a behavioral description that does not account for the richness of a person's life. People act within a context of relationships with others. So I view engagement as something that happens within collaborative encounters. Engagement happens with and among family, health care clinicians, and community. There are interactions and tools that can increase the engagement of another in a health care setting and ones that may disengage an individual. As I think about health goals and action, it involves how I might gather information, then how I act on the information with the support of others, not in isolation. Because we act or engage in health activities based on available resources in our neighborhoods and communities, continued engagement to solve health concerns I have may be impacted by a variety of factors.
NORMAN: The overall CFAH framework for patient engagement is very comprehensive, but it weights all 42 behaviors equally. A few actions in this set are probably more important markers of engagement than others. The short definition in this first question is perhaps too short. Behavior is central to patient engagement, but there are some missing elements. An amplified or mid-level definition would add three other components to the CFAH short definition:
- Attitudinal or emotional commitment.
- Sustainment of engagement behaviors over time.
- Collaboration, that is, working with the health care team, caregivers, and community resources to improve health, support engagement.
These additional layers are associated with successful patient engagement. The last item requires that physicians change how they engage patients – this doesn't receive as much attention as it needs.
PROCHASKA: At Pro-Change, we consider patient engagement on several levels. One way we support engagement in health is by reaching out to people to engage them in behavior change and health programs, by recruiting participants, by working on retaining their participation, by connecting with them regularly in order to help their progress, and by celebrating when they are having success. So in general we view engagement as more of a continuum: Reach --> Recruit --> Retain --> Progress --> Success --> Sustain.
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.?
NORMAN: Patient engagement gets universal lip service, but some of it's rather glib. If you talk about "patient engagement," heads nod. The field is gradually evolving. "Patient compliance" used to be the going term and now it's "patient adherence." "Compliance" infers hierarchy, presuming that patients should do what their doctors tell them. Still, contractors' actions can be inconsistent with what's established to be effective in patient engagement.
PROCHASKA: At the end of the day, there is a growing recognition that we need people to take better care of themselves. Too much money is being spent on the consequences of unhealthy choices and on health care. We don't think that patient engagement is just the flavor of the week. The concept of how we can take more responsibility for our health and health care is not going away.
CFAH: What do you see as the greatest barriers to patients being more effectively engaged in their health?
DRANE: A presumption that most individuals have the same level of interest in (even obsession with) their health as those of us who have dedicated our lives to the health of the nation. Couple that with the condescending approach that the health care system often takes in its messaging; real-life factors like caregiving and financial stress that suck time and energy, which the system often ignores; and finally, the competition that healthy behaviors get from the food and beverage industry. It's no wonder we're still struggling, no matter our great passion and best intent.
MINNITI: I am convinced that everyone inside health care comes to work to do a good job, to help people live long and well. But unfortunately much of the health care system and the way care is organized are saddled by traditions, hampered by the way we've always done things. Everyone (especially specialists) comes in with all sorts of rules in their head. They are trained to find out what is wrong and then do something about it... It is worrisome that so little time is available for getting to know patients, especially in primary care. Office visits where doctors interact with patients in increments of three to seven minutes are practical barriers to building relationships.
NORMAN: There are multiple barriers: environment, circumstances like health literacy, and more. The human condition is the foremost. We're flawed, irrational creatures. Habits are particularly enduring, and bad habits are the hardest to break. Emotions often overpower intellect as determinants of our behaviors. Long-term, important health goals are easily undermined by short-term gratifications that seem trivial by comparison. These barriers have been studied, and while some effective approaches to dealing with them have been developed, this is not yet an emphasis in medical education or most clinical training, leaving providers suboptimally prepared to engage patients despite the high credibility and trust which typically accompanies the patient-physician relationship.
PROCHASKA: Some people just don't know how to change their behavior, or they may be demoralized. Or they think this business of health care is the doctor's job – that they already have enough to worry about. At the same time we do recognize that some providers don't want more involvement from patients; instead, some clinicians just want patients to follow directions. And many clinicians are simply used to being in charge. Values and preferences of patients are often not on the table for discussion. For example, when I had recent foot surgery, after four weeks my doctor wanted to know if I was happy. I said it was hard to be happy because there were still some things I couldn't do yet like play tennis or go for a walk. But my doctor just wanted me to acknowledge that I was happy with his surgery and care. So he was worried about measuring his skills, and I was measuring my life. We had different criteria for quality.
CFAH: What are some interventions that you've heard of that show promise in helping people to engage in their health and health care?
DRANE: We see value in outreach that recognizes that health is life and addresses the individual holistically. For example, our research and experience indicates the need to talk about the "life context" issues that impact health. Eliza calls them "the unmentionables," and we've been able to quantify the impact of these issues on health, well-being, and productivity... We predict that health plans and employers will start paying greater attention to how they proactively assess and address these unmentionable issues – not only because they impact quality and cost, but also because acknowledging these challenges shows a concern for people's well-being (which health plans will need to do if they truly want to be the consumer-focused organizations that we hope they want to be). Actual support for the hidden drivers of health – breaking away from the traditional definition of health care into areas like the unmentionables, which typically have been avoided by the health care industry – are proving to be worthy trends to watch.
MINNITI: 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.
NORMAN: I've extensively reviewed behavior change research and patient engagement models in the literature. The Information-Motivation-Behavioral Skills (IMB) skills model, sometimes called "Fisher and Fisher" for the researchers who developed it, is one that I hold in positive regard. This fairly simple model – straightforward to apply in care delivery – says relevant information coupled with motivation leads to behavior changes. Fisher and Fisher demonstrated its effectiveness in changing two behaviors that can be intractable: substance abuse and sexual behaviors among people infected with HIV.
People have to be trained how to apply information and how to change behavior. Information is necessary but not sufficient to change behavior about 80 percent of the time. But what do medical schools teach? Give patients information, and if they don't change, give them even more information. Repeat, and repeat again. If patients still aren't adhering, then use some type of "hammer," such as embarrassing or scolding them.
Also, motivation by itself isn't sufficient to change behavior. A person in the ICU after a heart attack is extremely motivated to change. But data indicate the changes aren't sustained. After 30 days, about 25-35 percent have stopped one or more medications. After a year, a majority has stopped one or more medications, and a sizable minority no longer takes any of the medications. People need to know what to do, how to do it, and be motivated to do it. The IMB model is like a tri-legged stool – you need all three parts.
CFAH: Some health care contractors/consultants 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 to become more involved?
DRANE: Most health care executives are thinking about how they can spend their dollars in a way that creates more value for a population while reducing all of our costs. Engagement is the key to making that happen. Whether we are talking about taking better care of chronic conditions or preventing them in the first place, the role that each of us plays in our relationship with the health care system is only increasing. We will each be navigating our own paths toward our optimal health and that will require an industry that considers us holistically and provides the tools and communications to let us take the reins, in partnership with our providers, without breaking the personal or collective bank.
MINNITI: Stories of success and progress are important tools to convince people that patient engagement is important. Seeing and learning about short-term gains, sharing data, and researching the impact of engagement is helpful. Having a positive experience will make a difference. Training of clinicians needs to emphasize more experiences providing patient-/family-centered care as well as valuing emotional intelligence as a clinical skill. And health care providers need more understanding about how difficult it is for people to make changes in health behaviors. They need a greater appreciation for the context of people's lives and the challenges they face.
PROCHASKA: I heard an interesting statement last week that the Affordable Care Act is going to make physicians sit down and start to listen to their patients more. That since they will be serving more patients and more diverse patients (some who may not have had health insurance before), that the understanding and knowledge base of both individual and population health management will be impacted. I thought that was fascinating. I hope it is true.
Full interviews and the results of our study are available in our report: Here to Stay: What Health Care Leaders Say About Patient Engagement.