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The Engaged Patient

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

The Engaged Patient:  Rosemary Ireland Black
Rosemary Ireland Black insisted on a CT scan that ultimately led to an early, lifesaving diagnosis of pancreatic cancer.

Connect with resources to help you become an engaged patient.

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 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.

-- Alexandra Sarkozy, Patient Education Resource Center librarian

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."

We've offered a few tips here to help you start thinking like an e-patient.

1. Assume responsibility.

Think about the last car you bought. You didn't hand that decision over to the salesman, did you? Only you know what medical choices are right for you. It's up to you to get the information you need so that you can get the care you need.

2. Communicate with your health care team.

Your doctor may be the expert on treating cancer, but you're the expert on how you feel. Speak up and be honest if things aren't feeling right. Become comfortable with asking questions. Consider taking notes so you can go over them again later.

3. Don't be afraid to ask for second opinions.

All too often, people are worried about offending their doctors. Don't be. This is a routine part of medical care, and you have every right to get the information you need before making a medical decision.

4. Educate yourself.

Learning about your condition can help you have better discussions with your doctors. Sifting through the vast amount of information online can be difficult -- particularly since some online information isn't credible -- so consider visiting the Cancer Center's Patient Education Resource Center. The staff can help you find the information you need.

5. Learn about clinical trials.

Participating in a research study may be the right choice for some people with cancer. The U-M Cancer Center offers many opportunities. Talk to your doctor or visit to find out more

Seek support.

Patients often learn from other patients. Consider joining an online support group or forum, such as those hosted by the Association of Cancer Online Resources, to glean information from others with similar experiences. Keep in mind that every person is not the same, though, and that any recommendations should be vetted by your health-care team before you pursue them.

7. Be prepared.

Make lists of questions before your appointments. If you read about a particular study that you think is relevant to your care, print it out and bring it with you.

8. Keep a patient tool kit.

Keep all medical records and notes in a single, organized folder. The U-M Cancer Center provides every new patient with a filing box that features helpful information for navigating your care. In addition, consider keeping a diary to track how you are feeling.

9. Find your inner mama lion.

Many of the best patient advocates are mothers. They will find a way to do what needs to be done for their children. Adopt a similar attitude about your own care.

10. Enlist help.

As much as you may want to be your own advocate, it can be difficult -- particularly if you're just not feeling up to it. Ask a trusted family member or friend to attend appointments with you and help you fill this role.

Connect with resources to help you become an engaged patient

Patient Education Resource Center at U-M Comprehensive Cancer Center
The web is teeming with resources for patients who would like to take control of their health care. A good place to start your research is with the University of Michigan Comprehensive Cancer Center's Patient Education Center. Our librarian, Alexandra Sarkozy, can help you find the right information for you. Also, visit the PERC to receive a Patient Tool Kit to help you stay organized.

E-patient Dave
Listen to a leader in the engaged patient movement. When Dave deBronkart learned he had a rare and terminal cancer, he turned to fellow patients online to get the information he needed. Find out why he thinks engaged patients are the key to improving health care-for individual patients as well as the nation.


Association of Cancer Online Resources (ACOR)
Find an online support group.

Center for Advancing Health

Foundation for Informed Medical Decision Making

Health News Review
Visit this website to read experts' reviews of news stories about medicine and science.

Journal of Participatory Medicine

Continue reading the Fall, 2011 issue of Thrive.

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Thrive Issue: 
Fall, 2011