QUALITY: Mapping Out a Path to Health

Earlier this week we wrote about "patient centered medicine" and the role some real live people have had in making the medical system more responsive to the needs of patients and families—which also means they are often more sensible and efficient. One of the patients was Richard Scholtz of Bellingham, Washington, who became involved in patient advocacy after his own heart surgery some 20 years ago, and then through a Robert Wood Johnson Foundation-backed "Pursuing Perfection" program that also involved his elderly mom.

After meeting Scholtz at an IHI conference, I called him to learn more about "health mapping" in his community. Before we got talking, he suggested I make my own map. Being a typical multi-tasking working mom, I swiftly sketched a very matter of fact literal map. Our house. The pediatrician. My OB and my internist. (A few years ago, I probably would have included the allergist, but we switched to one that is Metro-accessible, and my oldest son now can get there on his own. Off Mom's Map.)

But health maps don't have to be so literal. Scholtz told me that the mapping began with doctors in his community, trying to chart available resources and relationships. A year and a half passed before anyone realized they needed to put patients on the map, let alone invite patients to do their own mapping. The idea has evolved now as the whole community has begun to think differently about health care.

"It's part of how we understand ourselves and our medical system. ...Who talks to who? How to put the patient experience on the map," he said, adding that the maps have helped patients better understand the resources and connections needed to manage their chronic diseases.

At first the map showed the interlocking medical resources in Whatcom County, Washington—the squares and lines and administrative centers and laboratories and doctors offices and specialists. But it became a tool for thinking more broadly about health and health care. Doctors tended to think, "The patients come, they tell them what to do, the doctors have done their job, the patients do what they are told... They weren't really figuring out that the patients didn't do what they were told to do." They didn't take their medication, or they didn't take their medication as they were instructed. Or they sort of did it but didn't tell the doctor exactly what it is they were doing and not doing. When doctors finally began putting patients on the map, they had begun to think about them differently. "Not as receivers or endpoints," Scholtz said, "But as active participants in treatment and diagnosis." Even his elderly mom (whose map, now that she's well into her 90s, now looks more like a list) became more adept at managing her own chronic heart condition.

So the map became more fluid, more open-ended. And it taught participants that how doctors and hospitals thought of health care and how ordinary people thought of health care aren't identical. "We thought we'd see doctors, hospitals, yoga, maybe the food co-op," he said. "What we got back on the maps was so much broader than we thought we were going to get. It brings up the whole question of what do they think health is, and where does it come from. And what the medical system thinks it is. It thinks it IS the health system." But the maps the people drew showed not just the places doctors have offices, but a glimpse into how patients live their life, how "medicine" and health intersect.

Map as life? As he spoke, I began to think differently about my own map. I began to visualize the swimming pool, the allergist, the acupuncturist, the pharmacy near the supermarket, the pharmacy on the carpool route, the pharmacy near the hardware store, the pharmacy near my husband's office, the night-time pediatrics place I rushed to when my kid had pneumonia, the eye doctor, the kids' dentist, the emergency room (is there any mother of two boys who hasn't ended up in an ER with a child in need of stitches?), the playground, the trail I sometimes walk early Sunday morning with my friends, as well as the spiritual cornerstones of our lives.

This doesn't mean that we are thinking any differently about the need to insure all Americans—we don't think vague ideas of "wellness" will go very far when someone else's kid needs those stitches, someone else's mom's heart begins to fail. But we want more than insurance. We want a good health care system. One in which doctors understand patients' needs. One which pays doctors and patients to communicate those needs, not just rush past each other into avoidable errors or missed opportunities. One that takes our national map—that $2.2 trillion map with 47 million uninsured people, unnecessary procedures, lack of prevention, avoidable errors—and turns it into someplace healthy we all want to live.