There’s some confusion out there in the media that “Patient Power” is only about patients “holding hands” and providing emotional support to one another. It’s the warm and fuzzy side of medicine, like sitting at someone’s bedside. That support is terrific. But these days the leadership role of a well intentioned and well informed patient doesn’t stop there. The role includes gathering and disseminating leading-edge, accurate medical information to help others make decisions.
Many would argue that is the doctor’s role. And it is. But not exclusively. Today smarter patients are becoming full partners in discussions about their diagnosis, treatment plan, and aftercare. And the best of the lot are becoming citizen-reporters where and when medical news breaks. Because I grew up in journalism and THEN became a leukemia patient, it has been natural for me to fall into this role. What’s exciting to me now is that others are joining me.
At the big American Society of Hematology (ASH) meeting beginning later this week in Orlando (yay, sunshine for this Seattlelite!) I’ll have help from a number of “patient-reporters” who will be attending. Some have been treated for leukemia, others for multiple myeloma or lymphoma. And of them are very well-informed. They know who the leading doctors are, they know how to interpret scientific studies, and they will help me be on the lookout for what’s a big deal for patients. Our reports will be posted everyday at www.patientpower.info/ash .
Maybe sooner or later the general media will begin to understand that while these patient-reporters may not be the best source for general medical news, they are to be respected content producers for others with the same health concern. The bottom line is you don’t have to be an M.D. to be an “expert.” My friends later this week are truly the “Anderson Coopers” and “Katie Courics” of blood-related cancers.
On a related note: as you know I have interviewed, hundreds, maybe even thousands of patients. But often it’s over the phone. I feel like I know them, and I never forget these folks and their inspiring stories. On my most recent trip to a medical convention, The American Heart Association meeting in Chicago a couple of weeks ago, I had the chance to meet in person two great women we had featured on Patient Power. We popped out our little camera and videotaped the reunion. One was with Jennifer Ambrose, her “miracle baby” and her husband. Jennifer was featured in a podcast and then later a Powerful Patient video. She had been diagnosed with a rare abdominal cancer, went looking for a specialist, took her whole family from Chicago to San Diego as she got successful treatment. And then got pregnant two months later. Meet the baby in our reunion video! It was thrilling for me.
The other Chicago reunion was with Holly Trandel. Meet her in our second reunion video. Holly is featured in our latest program on oncofertility. This is the story of a teenager who was treated for cancer, then had another cancer as a young woman. She worked with experts to preserve her fertility before toxic drugs were administered. Now Holly is doing well, headed for her honeymoon, will have embryos implanted before long with hopes of having a baby or two. But beyond that Holly’s job is to educate patients at Northwestern Memorial Hospital. Her health journey and a lot of education have helped her be an expert to help inform others.
Jennifer does this too as a queen on Facebook.
Patient-reporters, patient experts. This is the new age of medical communications, don’t you agree?
Look for my reports from sunny Florida. After an unusual November snow here in Seattle I am ready!
Wishing you and your family the best of health!