Unleashing Patient’s Power in Improving Health and Care

October 3, 2018

Article Summary


We know that patient engagement has a powerful effect on outcomes, but we haven’t yet truly harnessed patient’s power. Maureen Bisognano, former president and CEO of the Institute for Healthcare Improvement (IHI) discusses the effect of patient engagement across the IHI Triple Aim: improving the experience of patient care, improving the health of populations, and lowering costs.

She shares examples of how increased patient engagement can help improve healthcare outcomes and deliver a better care experience while reducing costs. Such examples from her experience in the field include how lessons from the “flipped classroom” can be translated to healthcare, how technology can improve patient accountability and decision making, and other impactful stories.

Medical professional reassuring patient while looking at chart

Across the world, we’re facing significant financial constraints in healthcare, an aging population, and the increasing burden of chronic disease. We need to move to the Institute for Healthcare Improvement’s Triple Aim Initiative of better care for individuals, better health for populations, and lower per capita costs. We also need to unleash patient’s power if we truly want to transform healthcare. We need new solutions and new ways of thinking if we want to be successful.

How to Flip Our Thinking in Healthcare

A few years ago, I read a New York Times article about a teacher who turned education upside down by “flipping” his classroom. When he was teaching during the day, he would give a lecture, use slides or overheads, and then gave students homework to do on their own. The students would go home and struggle alone as they tried to figure out how to incorporate the day’s lesson into their assignment.

As an athletic coach, he realized he went about that role in a completely different way. When coaching, he would bring all the athletes together for training and observed their strengths and weaknesses. Before they came to practice each day, he would give them videos to watch at home. The learning took place at home and then he could actually watch them practice. He started thinking about why he taught one way and coached another. He decided to flip his classroom, giving students videos to watch at home. Then, when they were in class, they worked together. He could see how each child was absorbing information and where the barriers were. What he found is that when he changed his teaching to be more like his coaching, the results flipped in every grade. Failure rates dropped, graduation rates rose, and class attendance improved.

This change helped him identify what he called “silent failers”–the kids who were struggling but slipping through the cracks in his old way of teaching. This flipped classroom model is described as moving the “sage on the stage” to “guide on the side.” When I read that line, I thought, “That’s exactly what we need in healthcare.” Our ability to sit and write prescriptions or give patients recommendations in a one-way conversation isn’t cutting it. We’re seeing our health rates in the United States drop as our costs rise. If healthcare practitioners can begin thinking and acting like the “guide on the side,” we can make progress towards the triple aim: improving health, creating better experiences of care, and reducing per-capita costs.

What Matters in Healthcare

Another article also gave me a new way to see our professional roles. This New England Journal of Medicine (NEJM) article by Susan Edgman-Levitan and Michael Barry called “Shared Decision Making-The New Pinnacle for Patient-Centered Care” has one challenge that I took to heart and shared globally. In this article, the authors said, “We can’t only ask, ‘What’s the matter?’ We also have to ask, ‘What matters to you?’” I started doing that in my own work. I started going out to the field, meeting with patients, and I started recommending to clinicians, “Don’t just say, ‘What’s the matter?’ Ask, ‘What matters to you?’” This question transforms the interaction from a conversation about clinical symptoms, problems and prescriptions to a partnered discussion on getting to the most important goals in a person’s life, using all the knowledge of the health care professionals and all of the assets of the patient and family.

I hope that everyone reading this takes as a homework assignment this idea that we need to ask, “What matters to you?” This idea has spread worldwide with countries around the world celebrating “What matters to you day?” on June 6th every year. This event prompts an outpouring of stories from both patients and healthcare practitioners sharing their experiences of moving from a focus on disease to a focus on health.

Patient Engagement as the Next Blockbuster Drug

Years ago, I was teaching with Susan Dentzer and we were talking about the power of patient engagement as the next blockbuster drug. You may have seen the research from a coordinated study of cardiac care where patients were engaged in the design of their care plans and carrying out their everyday life through the perspective of engagement. The results are dramatic. Patients had an 88 percent reduced risk of dying of a cardiac-related cause when enrolled within 90 days of a heart attack compared to those not in a program. And, clinical care teams reduced overall mortality by 76 percent and cardiac mortality by 73 percent. A line from the study summarizes how I feel about patient engagement: “Imagine what the headlines would be if a new cardiac drug proved this kind of effectiveness. It would be malpractice not to use it.” When patients are involved in their own care, the results are so effective that we have an obligation to pursue patient engagement.

Trevor Torres, Empowered Patient

There are a few examples I want to share that illustrate just how effective patient engagement can be. The first is a young man Trevor Torres, who is a self-described “diabetes evangelist.” He has multiple chronic diseases and yet feels empowered when he’s able to engage in his own care. Trevor’s clinicians told him “There are two ways to think about giving yourself insulin. You can either take the same dose every day and adjust your diet, or if you know you’re going to be eating something different, then you can adjust your dose.” Trevor’s response this information was “Why don’t I just create an algorithm that deals with both variables?”

When I asked Trevor how he defines his health he said, “It’s the energy to do all I need. He said, “I’m just starting college. My life is hectic. I feel like my focus should be on my school, grades, and making new friends. If my health is predictable and I can control my energy, I can thrive.” That’s what health means to him.

The cost of diabetes is incredibly expensive in human terms, in disability terms, in dollar terms, and in hospital utilization. We can work with patients like Trevor and make dramatic improvements toward the Triple Aim of health and care improvement.

Changing the Balance of Power

Another example I want to share illustrates how changing the balance of power in medicine can yield incredible results. I was touring an academic medical center in Jönköping, Sweden and found a place that looked very different than anything I had ever seen in a hospital: the patient self-dialysis wing. I know patients do their own hemodialysis and their own peritoneal dialysis, but I had never seen a wing of an academic medical center totally designed and run by patients providing their own care.

So how did it happen that a CEO decided to build a wing for patients to care for themselves? I met Christian Farman, a young mechanic who was diagnosed with glomerulonephritis and was admitted for dialysis. Christian quickly became interested in how the dialysis worked. After a few weeks, he asked his nurse to teach him how to do his own dialysis. Then, the 73-year-old woman in the next bed said she also wanted to learn. Pretty soon, many of the patients in the unit were curious and asking about taking on their own care.

Now they have a dialysis unit where up to 70 percent of the patients do their own dialysis. They’re operating at about one half the cost per patient, have evidence of better outcomes, and far fewer complications and infections. I’ve been to dialysis units from Vancouver to New Zealand and I’ve never seen one like this, where the patients are happy, healthy and taking care of themselves in a way that demonstrates the power patients have in their own care and the importance of social support in managing a chronic illness.

Changing the balance of power is not just about improvements in the healthcare system. The power of patient engagement has a profound effect on a patient’s personal life. There’s an app called, “My Life, My Dialysis Choice,” that walks patients through lifestyle values and options when they find out that they may need dialysis. It asks them questions like, “Do you have a dog? Would you rather sleep at night or dialyze at night? Are you afraid of needles?” Once they fill out these questions, the app gives them recommendations about peritoneal versus hemodialysis, in-center versus at home, daily versus nocturnal, etc., and what these patients are then having discussions with their clinician about these choices.

They feel like they’re co-designing their care and they’re getting better results. If we start to think about this idea of flipping from, “I’ll take care of you,” to “How do I work with you?” we see dramatic improvements in results all across the Triple Aim.

Flipping the Discharge Model

One of IHI’s Fellows, a physician from Sheffield, England was struggling with length of stay and the hospital discharge process. He began thinking of ways to flip the discharge process. Rather than doing physical therapy in the hospital and then discharging patients to a home, he thought, “Why don’t we discharge patients as soon as they are clinically able and have the home health team assess them and prepare them for their care at home?”

They started trying it and found that the flipped discharge process works really well. As soon as patients are clinically stable, they are discharged. Then occupational therapists, physical therapists, and community nurses work with them in their home. What they found is that patients that were scared in the hospital, became more confident and empowered as soon as they were in their home environment. The results were incredible: 10,000 patients got home three to four days faster in one year, saving as many as 40,000 hospital bed days.

Reablement

Another innovative model of care that produces better outcomes at a lower cost is reablement. It’s a multi-professional team working to achieve the patient’s goals in a collaborative way and at a different tempo that I’ve seen in many health systems. This different approach enables frail and elderly patients to thrive in their home settings and to get back to health and what matters to them.

The Importance of Curiosity

When I first became the CEO of hospital, I was 34 years old. I was young, and I believed that my job was to hire the most intelligent people and that that was how we were going to provide great care. As soon as I started doing rounds and talking to staff and patients, I realized that EQ, emotional quotient or empathy, was just as important as IQ. Since then, I’ve also come to realize how critically important CQ is–curiosity quotient. I think some people are naturally curious, but I believe you can build your CQ.

One way I do this is whenever I’m in a new healthcare organization, whether it’s an outpatient clinic or a hospital, I say “Take me to the place you are proudest of.” I’ve seen places I never would have thought to ask about, and I have learned amazing things this way. I’ve been taken to a 30-bed dementia unit and learned that the staff was able to go 861 days without any patients in restraints by putting book case covers over the doors so that patients weren’t constantly seeing doors opening and getting out of bed. The amazing staff at this hospital used quality improvement methods to ask why, to test changes and to make care so much better for every patient in that unit.

It’s the curiosity piece that helps us innovate and discover new models of care. We need to design and share new processes and new models like the examples I’ve provided. In each example, the idea started with one clinician or one patient running one Plan-Do-Study-Act cycle and then using quality improvement to build models that work for a population. My challenge is, how do we:

  • Flip the balance of care – from the hospital to the community?
  • Flip the balance of delivery – from individual providers to care teams?
  • Flip the balance of power – from the provider to the patient and family?
  • Flip the balance of costs – from treatment to prevention and co-production?
  • Flip the balance of emphasis from volume to value; and from healthcare to health?

Taking on challenges one step at a time in order to transform policy and change resource allocation can have a profound effect on the Triple Aim and an increased joy in work. If we can flip care to coordinate all aspects of care—physical, social, functional, emotional, and safety—we can prevent hospitalizations, improve the quality of life for millions, save millions, and build joy in our everyday work lives.

Additional Reading

Would you like to learn more about this topic? Here are some articles we suggest:

  1. The Top Five Recommendations for Improving the Patient Experience
  2. Quality Data Is Essential for Doctors Concerned with Patient Engagement

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