Tuesday, March 30, 2010

Tips for Being an Empowered Patient from Trisha Torrey


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Patient advocate and empowerment enthusiast Trisha Torrey recently participated in a fantastic WEGO Health webinar on the topic of patient empowerment. She shared some great tips on how to become an empowered patient and a partner in your own care. As is so often the case, Trisha developed her passion for patient empowerment after experiencing a health crisis herself and learning what it's really like for people trying to navigate the intricacies of an intimidating health system.

Trisha was diagnosed with a rare, fatal form of cancer. After waiting three weeks for an appointment with an oncologist, the initial tests indicated no sign of the cancer she'd been diagnosed with. When her oncologist wanted to push forward as though she had the cancer and start her on chemotherapy, her intuition told her to ask for a second opinion.

"At that point I became very empowered because I was so ticked off," Trisha said. "I got a hold of my medical records and started Googling the living daylights out of all those words I didn't understand and by the time I got to the second doctor I said 'I don't think I even have cancer.' "

Her second oncologist submitted her records to the National Institutes of Health for review to determine whether or not she had cancer. The response was good news: she didn't have cancer. But she experienced a mixed set of emotions upon receiving this information.

"Those who knew I'd had the diagnosis said 'You must be so relieved', and I was," she said. "But more than that I was angry. Here was this health care system I was so sure was out to make me well that had failed me. It was not only the doctor, but two labs who misdiagnosed me. I don't think they were intentionally giving me bad information. The system just wasn't set up to bring them to the right answer."

Trisha's Tips for Patient Empowerment:
  • On becoming an empowered patient: Learn to manage your doctor's expectations by letting her know you intend to be an engaged patient from the beginning of the relationship. Explain that if you work together you'll be able to be a more adherent, compliant patient. Try not to be intimidated. Most doctors don't want to be treated like gods. Instead, take charge of the relationship with your doctor. Be better prepared and ask questions.
  • On avoiding being perceived as a pain in the butt patient: "Any patient who asks questions is considered a pain in the butt patient. It's not because they don't want to answer our questions but because it takes more time than they've allotted for us in the appointment book. Tell the doctor you know time is limited, but you have three questions today. Or realize the doctor is never going to get it and go looking for someone else."
  • Recognize why the doctor / patient relationship has changed: It's all about the connection between money and care. Jerome Groopman, author of How Doctors Think, says we're interrupted an average of 18 seconds into telling a doctor what's wrong with us. Trisha calls this drive-by-doctoring.
  • Use the Internet as a resource and a tool, but do so wisely. To do this verify the information you discover by finding at least one independent, confirming source.
  • Some people say docs are intimidated by the Internet. Some are, especially those who haven't kept up with the latest & greatest, but they are mainly worried about the time it takes to discuss the information patients find. This is where managing your doctor's expectations comes into play.
  • Online support groups are fabulous resources, but don't just take another patient's word for it. Do your own research. By getting into discussions with patients who have already have good & bad experiences, you will feel more comfortable once you get to your doctor.
  • Use your intuition. If something seems too good to be true, it probably is.
  • Build your confidence. The more confident someone becomes, from the relationship they're establishing with providers to confidence they've chosen best treatment option and are staying up with the latest research on treatments, the better the situation will be.
  • But there will be times when you don't feel especially confident. "If you start feeling fearful or your intuition tells you something seems askew, that is the time to do more research and ask more questions. Just don't stop asking questions. The more info you gain, the more confident you'll feel."

Learn more about Trisha's work by visiting:

Every Patient's Advocate
Patient Empowerment at About.com
AdvoConnection
DiagKNOWsis

Kudos to Six Until Me's Kerri Morrone Sparling for her great work hosting this webinar.

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DISCLAIMER: Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing my experiences and news about migraines, pain and depression. Please consult your own health care providers for advice on your unique situation.