"Patient-centered medicine" is one of the buzzwords in health these days, so it was refreshing to hear from patients who actually had a voice in finding that center. Four spoke at a panel this spring sponsored by the Institute for Healthcare Improvement. Four patients. Four very different experiences. All had some success in creating a more responsive health care system. And when we at New America talk about reforming health care, we don't just mean insuring people. We want everyone to be covered so they can be part of a system that delivers high-quality, cost-effective, patient-responsive care.

(If you are interested in the difference between "patient-centered health care" which involves how we deliver care that patients need, and "consumer-directed medicine" which is a market-oriented approach to financing health care, read this Healthbeat post. They are not necessarily mutually exclusive, but they aren't synonymous.)

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Twenty years ago, when Richard Scholtz, was not quite 40, he needed surgery to replace a defective heart valve. Grateful for excellent care, he showed his appreciation by coming in every Friday to play music in the doctors' waiting room. Twenty minutes into his first "performance," one of the physicians came out and declared: "Everybody's blood pressure is lower!" It became a steady gig. They offered him a job, but he declined payment, although he later accepted a barter arrangement. He serenaded. They kept his heart ticking.

The experience did propel Scholtz, who is from Bellingham, Washington, into more activism about patients and health care, and he was able to help his aging mom learn to take care of her heart disease in a community that was part of a Robert Wood Johnson Foundation-funded "Pursuing Perfection" initiative. Among other things, the program helped patients create secure electronic medical records that they controlled. They could monitor their own chronic diseases, and share information at their own discretion with doctors, pharmacists and other practitioners, as well as family or friends who were part of their care team.

At the time his mother was already a bit confused—not suffering from dementia but having trouble dealing with a complicated medical condition. "Self-managing for congestive heart failure was tricky," he recalled. "But the care specialist spent time listening to her, understanding how she learned. So she was able to self-manage." The personal health record "has become a place where the patient has to make sense of their own situation," he said. The record contains both treatment instructions as well as the patient's own goals, how he or she stays well. Now that his mother is well into her 90s, he is less of a health-sidekick for her, and more her health navigator. He has also gotten deeper into "health mapping," which is both a literal map and a metaphor for understanding the context of good health in the life of an individual or a community (More on that later this week).

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Patient two was Ashley Peterson of Minnesota. Actually Ashley is the mom; the patient was her seven-year-old daughter, Camerynn, who has cerebral palsy, developmental delays and a rare brain disorder. Camerynn now has a "medical home"—another new term in health which basically means she is treated by a primary care practice that coordinates all her care, that knows how to manage chronic disease and cares about doing it right. "Our experience before the medical home," Ashley recalled "was we were really rushed at our appointments. And with a complicated child, you need time to talk to the doctor." Ashley was invited by Camerynn's pediatrician to help create the medical home to serve special needs children and their families.

Camerynn no longer has to wait more than an hour for her frequent appointments. Her complex condition is flagged in her electronic medical record, so when Ashley calls, the schedulers automatically book Camerynn for a longer appointment—20 to 40 minutes instead of the standard 10. The clinic doors finally were adapted to handle wheelchairs; special scales can accommodate disabled children.

Ashley doesn't have to give her daughter's complicated medical history over and over and over again to 13 different specialists; they have her record on the computer "and they know what's normal for that child." The electronic medical record is even accessible at the emergency room if Camerynn or other children in the program end up there (and even in a medical home model, where complex conditions are well-managed, E.R. visits may be reduced but not completely eliminated). And the doctors now use "picture boards" so young children or those like Camerynn who can't speak well can point to images to communicate—what hurts, and how much.

Three parent representatives regularly meet with the medical staff and care coordinator—and the care coordinator actually coordinates. "It's a huge improvement. She'll make appointments for all the specialists. And instead of a three or four week wait, it's a quick turnaround," said Peterson, who now serves on all sorts of boards, councils and volunteer groups—in addition to going to school to become a special education teacher.

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Jean Klein, who is in her 80s, played Mrs. Santa Claus for 25 years for her local business association in Colorado. She and her husband were in real estate, and they had a good life. When Al had a heart attack, he got good care. Klein always found that if she hugged the doctor, Al would get even better care. Then she got sick. She woke up on life support with double-pneumonia. She survived. "They brought me back twice." Her young doctor ("I'm old enough to be her grandmother," Klein said.) saw something special in the elderly woman and invited her to join a patient advisory group where patients could help the doctors see the treatment from the patients' perspective. Klein had a few simple suggestions that made a big difference.

"The doctor looks at the computer, he talks to you, you say yeah, sure, and then you go out. Your cell phone rings. You drive off. You remember you forgot to go to the lab. You have to call the office... We came up with the idea of letting him (the doctor) put everything he wants you to do in that computer. Then he pushes ‘Print,' and by the time you get out to the desk, you can see it for yourself." The "After Visit Summary" helps patients keep better track of tests, appointments, referrals and their medications, and if they are elderly it make it easier for them to share it with family members too.

"Think of all the old wimpy people who aren't going to be calling back," Klein told the doctor (whom she also hugged). "This will save you a lot of time."

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Margaret Murphy, from Cork, Ireland, lost her son Kevin in 1999. He was 21. He didn't need to die. "Every aspect of his point of contact (with the care system) failed him," she told the IHI conference. His care in both Ireland and the United States was a comedy of errors—except that it was a tragedy not a comedy. His "patient journey," as she calls it, of misdiagnosis, mistreatment and miscommunication (potentially life-saving information slapped on a sticky note instead of in his chart) turned her into a dedicated international patient safety advocate, part of an international movement. The goal: to make sure there are no more deaths like Kevin's.

Stay tuned for more on Richard Scholtz and mapping.