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The Engaged Patient

10 things you can do to take charge of your medical care

The culture of medicine has changed: Gone are the days when doctors dispensed treatment with a paternalistic air. As medicine has advanced, patients have more choices about how they can approach their care. Combined with the vast amount of health information available on the Internet, patients are educating themselves and partnering with their physicians to make informed medical decisions.

Consider Rosemary Ireland Black's story. She's a tall, willowy woman, but her stomach suddenly started to bloat. She went to the doctor twice, and he said nothing was wrong. So she went back a third time and demanded a CT scan.

"He said, 'What for?'" Ireland Black said, recalling her doctor's skepticism. "And I looked at him and said, 'Because I want one.'"

The scan revealed a suspicious spot on her pancreas, so her doctor referred her to a surgeon in metro Detroit. During an appointment with the surgeon, Ireland Black's husband noticed the word "malignant" on one of his wife's medical reports. Until this moment, the couple hadn't realized they were dealing with pancreatic cancer.

The couple was in shock, but they knew this wasn't the right surgeon for Ireland Black. Ireland Black called a friend who is a doctor for advice. Her friend helped her research her condition and find a physician who is a leading expert on pancreatic cancer: Diane Simeone, M.D., a University of Michigan Comprehensive Cancer surgeon.

Simeone explained two surgical options to Ireland Black. After reading up on both procedures, Ireland Black said, she opted for a surgery that removed 45% of her pancreas as well as her spleen. Three years after facing one of the deadliest forms of cancer, no trace of the disease remains.

"Sometimes you just know when something isn't right. Do not let your doctors dismiss you," Ireland Black said. "I still go to my original doctor, but he's on the ball now. He actually thanks me for being my own advocate."

This shift toward becoming your own medical advocate has come to be known as the "e-patient movement," said Alexandra Sarkozy, the librarian who leads the U-M Cancer Center's Patient Education Resource Center. The term "e-patient" describes people who are "equipped, enabled, empowered and engaged in their health and health-care decisions, according to "E-patients: How They Can Help Us Heal Health Care," a white paper by Tom Ferguson, M.D., and the e-Patient Scholars Working Group that serves as a blueprint of sorts for the movement.

The web is teeming with resources for e-patients: online support groups, forums, blogs and non-profit foundations have posted massive amounts of information for people who would like to become more assertive medical consumers.

"Cancer treatment is often difficult and requires big lifestyle changes," Sarkozy said. "The e-patient movement is not only helping to empower patients to be more active partners in their care, but offering them emotional support as they connect with other patients who have similar experiences."

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This article first appeared in the Fall, 2011 issue of Thrive.

Print Thrive Magazine; Fall, 2011