Dr. Michele Heisler is an associate professor of internal medicine at the University of Michigan and a research scientist at the Center for Clinical Management Research at the Ann Arbor VA. She's passionate about finding new approaches to give people with chronic illness the flexible, long-term support they need. This is the fifth in my series of profiles on diabetes change leaders.
Q: What led you into medicine?
Michele Heisler: I began my career with the Ford Foundation, I was working on poverty and human rights programs in Brazil. While there, I was greatly influenced by a Brazilian educator Paulo Freire. Freire devoted his life to developing approaches that mobilize people's self-efficacy (the belief in one's capabilities to achieve a goal), enabling people to face personal and social challenges and work effectively toward change.
When I went into medicine, I was drawn to finding approaches that would empower adults to manage chronic illness to improve their health, and their lives.
I realized while I was at Harvard Medical School how inadequate our medical training is. Almost all of our training is geared toward treating acute illness. Someone comes in with pneumonia, a doctor tells you what to do, you do what they say and you get better. But to live well with chronic illness, which more and more of us are doing, almost everything depends on what patients do in-between office visits.
Q: What drew you to diabetes in particular?
MH: Two things. First, it's such a huge problem. I just returned from Chile where it's a growing epidemic like in so many countries. Second, diabetes requires so many sustained behavior changes from the patient: monitoring blood sugar, insulin dosing, taking multiple medications, adhering to diet and physical activity regimens, ongoing laboratory tests, seeing a team of doctors. Also, many patients face barriers to parts of their treatment like taking their medication as prescribed or following a complicated or rigid diet or exercise program.
I'm investigating how we can change the health care system, and provider practices, to give people with chronic conditions the kind of support they need and are often not getting now. Also, many patients with a chronic illness know much more about their condition than any doctor could know. It's a unique experience to live with a condition and develop the strategies that work for you. Yet, their expertise is wasted.
Q: Tell me more.
MH: The health care system is set up so that doctors and nurses do the helping; patients aren't often given the opportunity to share what they know. That leaves many patients passive and feeling helpless. Yet most patients, even if they're struggling with self-management, can help both themselves and others.
Q: You conducted a diabetes peer-partner study. What were you hoping to learn?
MH: We wanted to see if pairing type 2 diabetes patients who had poor blood sugar control (high HbA1cs) would prompt improved diabetes self-management and better clinical outcomes. We matched patients with someone about their age who also had poor glycemic (blood sugar) control. Participants were helped to set short-term behavioral change goals and received some communication skills training. Each partner received and gave coaching through at least one phone call a week. We then compared outcomes between the peer-partner patients and those who only received traditional nurse management care.
Q: What did you find?
MH: We were surprised how much better the peer-partner group did clinically. Their HbA1c levels were lower by about one percent at the end of six months than the group that received only nurse care management. That's almost the same HbA1c lowering you'd get from starting Metformin (first line drug for lowering blood glucose).
Also, we were amazed that many patients in the peer support group who'd been resisting insulin began it. No patients in the nurse care group began insulin. Just as the observational literature tells us, patients who aren't on insulin often have a lot of fear about it, that it's going to be this horrible thing. But when patients in the partner group heard from a fellow patient, "Oh, it's only one shot a day, it's actually not so bad," that carried a lot of weight. More weight than their doctor haranguing or threatening them with what would happen if they didn't start insulin.
Q: What do you think makes hearing something from a fellow patient persuasive?
MH: If I see you as being like me, for example you're from my neighborhood, you're a woman, we have the same cultural or religious background, or in this instance you share the same chronic illness as me, then what you tell me is going to have a lot more impact on me than what a nurse or doctor tells me whom I don't really know that well or relate to.
We also learned that it wasn't only having someone else like you tell you something that was influential, but that both people in the partnership were working on something. That created a team feeling. Many people in the in-depth interviews we conducted said something like, "I knew I could lie to my peer partner, but I didn't want to let my partner down, so I got on the treadmill and exercised." Also, I think people were motivated by feeling that they were helping somebody else get better and that inspired them to also do better themselves.
Q: There was something else surprising about your study. None of the patient partners had good control of their blood sugars when they began the program.
MH: That's absolutely true. When we were planning this a lot of people said to us, "What are you doing?" because all our participants had high A1cs and were struggling to bring down their blood sugar levels. Many people felt that we should keep to a more traditional peer model where one peer with good control helps coach somebody with poor control. Yet for all the reasons I mentioned they were quite able to motivate each other and themselves. Interestingly, the least successful pairs in our pilot were someone with very poor control matched with someone with very good control who didn't seem to have any problems. The person with poor control said to herself, "Gosh, this person is clearly not like me and I have nothing to offer her."
Q: Since behavior change is so critical to managing diabetes why is it given so little attention?
MH: That's such a great question for many reasons. I finished Harvard Medical School in 1997 and we received no training in behavioral counseling. Nurse practitioners probably get more training, but doctors get very little. Doctors are still trained in the expert-model: All I have to do is give patients information and tell them what to do. A lot of doctors say, "Well, I told the patient what they should do, it's kind of their problem if they don't obey me."
I've learned that just telling people what to do is usually counterproductive. Instead, tapping into people's goals and values and helping patients link why behavioral changes might affect other things they care about, like being a good grandmother or parent, are much more motivational.
Q: Are there other ways in which doctors can be more effective?
MH: I think a team approach is very effective. For instance, a doctor can use a diabetes educator or train a medical assistant to help people set self-management goals and provide follow-up. Then the doctor can pick up from there with the patient and reinforce what's been started and provide encouragement.
The University of Michigan Health System has recently incorporated self-management support in our performance measures, for example 'effectively set self-management goals with the patient.' Health systems and providers are very responsive to incentives and quality measurement: What is measured is often what is emphasized.
We also need better mechanisms to support patients' efforts between visits. There are a lot of promising ways to use technology to achieve this: cell phone calls, text messaging and internet programs. One of my colleagues is linking the phone, internet and doctor's office to help family members who don't live in the same house support their loved one.
Q: What can patients do to improve visits with their doctor?
MH: Patients have to insist on better care. We know among minority groups doctors may be slower to initiate insulin and often slower to increase medication doses. Much of this is clinical inertia, a failure to initiate or intensify therapy, like not increasing doses of blood pressure medication quickly enough.
The more patients can be informed and say to their doctors, "Wait a minute, my A1c is high don't you think I need another medication?" the more incentive for the doctor. The more patients can come to their doctor with a written list of questions and concerns the better care they will receive.
Q: Clinical inertia sounds so contrary to what we expect of our health care providers. How does this happen?
MH: You have to imagine how much a doctor has to do and with so many limitations. Part of the problem is competing demands during short visits with patients who have multiple problems. Also many providers lack supporting tools and staff. Where I practice, the VA in Ann Arbor, I have an incredible integrated electronic medical record keeping system. If I start someone on insulin, let's say, I can immediately refer them to a case management worker who can spend an hour educating them.
For many doctors who don't have these kind of supports it's oh, my, start someone on insulin? That will take a huge amount of my time. Not only do they not have access to anything like an integrated medical record system, many small practices may not have a nurse who can provide insulin education and follow-up. Physicians understandably fear a patient may become hypoglycemic (blood sugar falls dangerously low). Without the tools, staff and a system of follow up and support, doctors are overwhelmed. You begin to see how clinical inertia can set in.
Q: Given what you see regarding the needs of patients and the current health care system, is there a bright note?
MH: Many health care professionals are out there working with patients on improving care. I also think advocacy from patients and people like you, a writer who understands what it's like to live with diabetes, is part of the current that will get us to where we need to go.
Dr. Heisler's openness and enthusiasm reverberated through the phone when I interviewed her while she was sitting at the airport between flights. The findings of Dr. Heisler's study are published in the Annals of Internal Medicine Oct. 19, 2010.