Patient Engagement: Your Guide to Patient-Centered Care

Mary Jean Schumann, DNP, MBA, CPNP, FAAN

Mary Jean Schumann, DNP, MBA, CPNP, FAAN

According to the 2013 White Paper from the Nursing Alliance for Quality Care, co-authored by Mary Jean Schumann: “Patient engagement is the involvement in their own care by individuals (and others they designate to engage on their behalf), with the goal that they make competent, well-informed decisions about their health and healthcare and take action to support those decisions.” 

Why does patient engagement matter? It’s about getting to better health outcomes. Moreover, the impetus to move towards a patient engagement model must come from healthcare professionals, specifically nurses. Even when you have patients who are highly engaged and energized, says Schumann, the system does not necessarily reward them.
Schumann outlined nine guiding principles of patient engagement, beginning with partnership between providers, patients, and the families of the patients. At minimum there needs to be two experts in the room. Each has knowledge that the other needs in order to reach a good outcome. Patients know about themselves, their preferences, values, and resources, whereas the healthcare team member understands the medical evidence, including risks and relative odds of different outcomes.

Nurses and others must practice a person-centered approach to healthcare delivery and be willing to fully support patients as they encounter obstacles in the healthcare system. Healthcare professionals must also embrace and continuously support the belief that patients and families are or can become competent to engage fully in making informed decisions about their own health and healthcare.

Health Literacy: The Missing Link in Public Health?

Andrew Pleasant, Ph.D.

Andrew Pleasant, PhD

Andrew Pleasant, PhD, Senior Director for Health Literacy and Research at Canyon Ranch Institute, affirmed that “health literacy is the tool that can help people, and help health systems help people, to live a life of health and wellness and lower costs — regardless of socioeconomic status or other social determinants of health.” It can help people use the skills they have instead of being daunted. But, he added, though we talk about the power of health literacy correlated to health outcome and health status, we haven’t yet changed the world as much as we’d like. The health of the world continues to decline and the cost of health continues to rise. Our healthcare system absolutely requires proficiency, but 88% of us are below proficiency level.

Pleasant defined the task of public health as standing in front of millions of people and persuading everyone to move 5 steps to the left. Persuasion is one of 4 options available to public health. The others are regulation, technology development, and education. But, if you lose sight of the individual in the midst of the public context, it’s hard to create behavior change.

He gave several examples of public health campaigns that, seen through a logic model, failed. The logic model illuminated the points at which the campaigns went wrong. Perhaps the most powerful example was the anthrax scare in the United States. Information was widely available and thus easy to find, but there was low public understanding due to complex government information sources. The public failed to evaluate the risk accurately, and assumed everyone was at risk. There was little communication or feedback between those giving information and those receiving it, and the result was that information was misused counter to public health benefits; in fact, antibiotic usage increased in every state in the nation.

Why Are You Giving Me This Number? Accurate but Meaningless Health Data

Brian Zikmund-Fisher, Ph.D.

Brian Zikmund-Fisher, PhD

Brian Zikmund-Fisher, PhD, began his presentation with a barrage of numbers with which patients have to deal, including risk percentages, treatment success rates, blood test results, medication dosing charts, and nutrition labels. As an example of an objective numeracy measure, he asked the audience which represents the higher risk: 1-100, 1-1000, or 1-10? (Answer: 1-10.) Subjective measures of numeracy include the questions, “How good are you at working with fractions?” and “How often do you find numerical information useful?” He cautioned that, as with other kinds of literacies, numeracy does not equal education level. 

Problems with numeracy — the ability to understand, transform, and derive meaning from quantitative health information — can often come from the way the information is represented. Zikmund-Fisher pointed out that the objective question he asked the audience exemplified this problem. Because people assume that an increase in the denominator means an increase in risk, people may have been confused or doubted the right answer, even if they got it.

Zikmund-Fisher pointed out the dual nature of risk: there is the risk of occurrence, and then there is non-occurrence. Risk calculators tend to focus attention on the numerator (occurrence risk), and patients must do mental math to see the equivalent risk of non-occurrence. It’s also important to ask what we want patients to know about risk. Or, we can ask, what do our patients need to do? Zikmund-Fisher introduced the “harm anchor” as a practical concept: it is the point at which something needs to happen. Harm anchors may sometimes need to be the focal point of numerical information.

In order to overcome numeracy barriers, we need to provide context, know that less is more, and match the format to the need. We do not want to use “might want” or “need later” to figure out what to include in our discussions or materials. The ethical obligation for transparency cannot override the requirement to be actually useful in a given moment for a given individual. We must recognize why we are providing data before we provide numbers.

Richard H. Carmona, MD, MPH, FACS • Jennifer Cabe, MA

Richard H. Carmona, M.D., MPH, FACS

Richard H. Carmona, MD, MPH, FACS

Richard Carmona, MD, 17th Surgeon General of the United States (2002-2006) and President of Canyon Ranch Institute, has spent 11 years preaching the gospel that health literacy involves cultural competency, and both are integral, not ancillary, to public health. To underscore the point, he joked that the degree he really needed, in addition to being an MD and RN and having a Masters of Public Health, was in anthropology. But he is still pondering the question of how to operationalize that gospel. The question, he says, is not about the science. It is about how to deliver health information in a way that creates sustainable behavior change.

During his presentation, Dr. Carmona recounted several experiences that taught him about execution and operationalizing. He described being at a fast food restaurant with his family. When he realized that many people recognized he was the Surgeon General of the United States, and that he was holding a French fry, he immediately dropped it. There, he said, was a great opportunity for teaching and learning when he dropped that fry. 

As the Surgeon General, he wondered, for whom do we write the Surgeon General reports? Are they for the people? He realized that his grandmother who never spoke English would not be able to use the information in reports like a 900-pager on smoking cessation. How, he wondered, does that information get to people so they can take action? As a result, his team created “The People’s Piece” to ensure that the best science available was offered in a way that was understandable and culturally appropriate.

Dr. Carmona told the audience that we need to create resonant messages that change lives, to take what we know and get it out to all providers. So much of what we are trying to tell people is simple: wear a seatbelt, don’t smoke, walk a little. If we don’t have the ability to get the information to the people who need it, he says, we’re all going to pay. If we don’t engage the public, we will perish. But with the knowledge we have, we can do this. 

Jennifer Cabe, MA

Jennifer Cabe, MA

Jennifer Cabe, Executive Director of Canyon Ranch Institute, provided perspective on how health literacy plays out in light of the Affordable Care Act. It is, she says, a crack in the wall between people who need access to the system, and the system. Though there are only five explicit mentions of health literacy in the ACA, it is infused throughout. However, there remains lots of work to do. Navigators are key to widening the crack in the wall. Accountable care organizations (ACOs), groups of hospital systems and physician groups working together to improve patient experience, care coordination, patient safety, and preventive health, will become the predominant form of healthcare.