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The Birth of 'Patient Power'

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By Guest Blogger, Andrew Schorr

AndrewSchorr.jpgOne evening in August 2000 - on the night of the finale episode of the first season of "Survivor" - I began my participation in a clinical trial for chronic lymphocytic leukemia (CLL) at M. D. Anderson. Watching the TV show helped pass the time and the great nursing I received gave me confidence.

Some terrific things came out of that. First, the trial "worked" and I have had no sign of the disease since 2001. And second, while in Houston I began a dialogue with M. D. Anderson staff about creating a new support channel for patients and family members where I would host webcasts featuring M. D. Anderson faculty and inspiring patients.

Those discussions by day, while I was undergoing therapy at night, led to the birth of "M. D. Anderson Presents Patient Power." A light bulb in my head had popped on for me, while receiving chemo and experimental medicine, that my experience as a reporter and now as a patient could be used in a new way to help others and this great institution. I will forever be indebted to M. D. Anderson for its lifesaving research and care and in supporting these programs.

The concept of our programs is simple: I, as an M. D. Anderson cancer survivor, bring my experience and perspective as a patient to radio talk show-style interviews that are posted online. The guests are leading M. D. Anderson doctors, researchers, nurses, counselors and nutritionists. But that's not all. The Patient Power programs typically feature the real-life story of a patient who has faced a cancer diagnosis and received care at M. D. Anderson.

I have found after interviewing these folks that - as I often say - they are my new "best friend." The patients touch your heart with their stories and the medical team members touch you with their dedication to saving lives, making the lives of cancer patients better, and - if at all possible - Making Cancer History®. That comes through on each program.


Now something like 200,000 people have listened to our vast library of cancer discussions. I am so honored to be part of it. It's so satisfying to know that we can reach people on the Internet around the world with potentially life-changing information - specific information that, unfortunately, might never be available in depth in your local newspaper or on radio or TV. It's also been very gratifying to hear from people who have benefited from these programs. There are many. It just makes me want to do more.

Of course, my closest connection to someone at M. D. Anderson remains my own doctor, Michael Keating, a world-renowned specialist in CLL, and now my everlasting friend. I first met him in 1996 soon after I was diagnosed. I thought I "wasn't long for this world." He brought me back to reality, told me he'd soon have a suitable clinical trial to offer - the one I later chose. And he gave my wife, Esther, and me the confidence to have a third child, Eitan, now a star 12-year-old basketball player!

Dr. Keating has now been on several of our programs, just like his peers at M. D. Anderson, leaders in other fields of cancer care and research.

I urge you to listen to the program(s) that are most relevant for you and please tell others about Patient Power. I am convinced there is no resource like this anywhere to help you get oriented about a cancer concern with leading-edge, highly credible information you can use. This information - the perspective of experts and patients who have preceded you -- can truly arm you as a "powerful patient."

Wishing you success in your cancer journey as I have had in mine - thanks to M. D. Anderson.

Listen to Patient Power Podcasts
 

3 Comments

I first learned of Andrew Schorr's work to empower patients through a post to an online group about his reports from a national hematology meeting. His reports covered topics that were completely ignored by the mainstream media and covered in technical jargon by the medical media. For me, who at the time was newly diagnosed with leukemia, hearing the information in a manner that allowed me to use the data to support my own treatment was invaluable. I have since taken advantage of additional information on the patientpower.info site and have recommended it to many others. I have truly found that it's made a difference in my own recovery to partner with my medical care team by being an informed, active and powerful patient. Thank you Andrew and M.D. Anderson.

Patient power needs to start at the local level in all the smaller hospitals around the nation.
Each patient should have an advocate that directs prospective patients to facilities like MD Anderson.
I can tell you first hand that this does not happen.
Unless you have a clear thinking advocate in the consultation room with you in these "other" hospitals, many surgeons and doctors will direct you towards the limits of their own networks.
They may be aware of what a patient needs and where they need to go, but are limited to keeping the "business" within their own network.
Powerful patients start with powerful patient advocates and the needs for this are urgent and it starts where the initial diagnosis is given at the hundreds and thousands of local hospitals where the best efforts are initiated and the advice for follow up is limited.

First of all, a big thank you to M.D. Anderson Presents Patient Power. After listening to a few of the Patient Power Podcasts, it is evident that the guests are clearly knowledgeable about medical information concerning cancer treatment. However, it does not feel detached and insensitive, like reading a term paper. Instead, the integration of the patient stories allows people to feel a connection with the guests. Too many times cancer patients feel alone in their emotions, as though nobody truly understands what they're going through. And honestly, you really can't understand it fully unless you've gone through it yourself. That's why these podcasts are so important. They are providing medical information that people need, along with the emotional comfort to endure and push through such a heartbreaking disease.

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