Patients need not be patient anymore. As medicine’s doctor-knows-best culture of paternalism gives way, patients are participating in ways both personal and public — whether it’s an individual taking part in treatment decisions or groups of patients working to improve care for all.

Articolo di Suzanne Allard Levingston su The Washington Post

Samantha Kennedy, for example, helped lead a medical conference session to make doctors aware of the subtle difficulties that teenagers with chronic conditions may face in taking their medications. When she was 14, Kennedy developed ulcerative colitis, which inflames the colon. A flare-up requires taking several different but similar-looking pills at various hours of the day.

The Berkeley Heights, N.J., native never told her doctor that she was concerned about organizing her pills. But she feared being embarrassed if her friends saw her giant pill container, which looked as if it belonged to her grandma. She’d hide it in a drawer at home or in her dorm when she went off to college — making her likely to forget to take the drugs.

“It’s a minor thing, but it’s a major thing when you think about the implications” for her health, she said.

Three years ago, at age 19, Kennedy began participating in a patient advisory council organized by ImproveCareNow, a national network founded in 2007 to devise the best care for kids with digestive diseases. The network has a registry of 24,000 patients at 84 care centers.

With funds from multiple federal agencies and the endorsement of the American Board of Pediatrics, the network has become a prototype for sharing information and ideas and setting care standards. Patient data regarding treatment, medication and outcomes are entered into the registry and can be analyzed in an effort to improve care. Some patients, like Kennedy, participate in community conferences to discuss their experiences. Parents share insights and strategies about coping with the disease.

“The expertise that patients bring to the table is understanding what happens between doctor’s appointments,” said Kennedy, now 22 and a first-year medical student at the Cooper Medical School of Rowan University in Camden, N.J. continua a leggere