More Than a Patient

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There is a story that’s circulating online. And if you’ve ever been frustrated with the way the health care system has handled things, it’s really worth the read.

Salvatore Iaconesi, a 39-year old TED Fellow, was diagnosed with brain cancer. While it was big news to hear, to him it didn’t say nearly enough:

“I felt incomplete about the way that the medical system was handling my situation.”

“Being “diseased” is like a state of suspended life. Can I work? Have fun? Be creative? Not really.”

“When you are declared “diseased,” you become a set of medical records, therapy, dosages, exam dates. It’s as if you disappear, replaced by your disease.”

“I immediately asked for my clinical records in digital format, and left the hospital.”

Salvatore Iaconesi

He then used his own skills as a software engineer to “hack” his data, turn them into different formats, and publish them as openly available spreadsheets, notes, databases, videos, images and more online. Over 200,000 responses from doctors, patients, gamers, hackers, designers and researchers responded. Based on these responses, Salvatore began an “unconventional regimen” of therapies as far-reaching as diet and lifestyle changes, homeopathic and other alternative and traditional medicines. And his cancer growth has stopped.

To be sure, he is not out of the woods quite yet. But he’s not wandering around alone.  He has been working with two of the doctors who responded online to select a surgical procedure that meets his needs and preferences. And while navigating his own journey, he’s used his insight as an artist to paint a picture for the rest of us – a vision of something that’s more than just one guy’s website:

“I see a cure as a dynamic process, in which multiple doctors, professionals, artists, scientists and others join as a society — to converse, support each other, be open to various contributions and shape solutions that merge humanity, technology, technique, philosophy and art. Creativity and “normal life” become part of the process and bring “diseased” people back to life.

To me, a true cure is complete, is human, and has dignity. And it never ends.”

It comes down to empowerment. When Salvatore became a patient, he refused to stop being a human being. When his health turned into a process, he refused to be simplified down to a few charts. He turned his medical data into a personalized website that told his story. He refused to let go of what makes us all human – our place in society, our yearning for interaction and connection.  He’s invited the whole world into his life with the goal of kicking cancer out of it. And in doing so, he may be singlehandedly changing the possibilities for all of us.
Note: You can offer Salvatore your support, advice, recommendations and more right on his website.

2 thoughts on “More Than a Patient”

  1. Lulabell1 says:

    Wow, brilliant! I think he can be the pioneer of this concept and even start a foundation based on this where all people with their expertise come together to heal, discover, nurture and create! It’s actually the way we are meant to live! May God restore his health completely!

  2. Laureen Taylor says:

    I am truly inspired by Salvatore’s story. Thirteen years ago my son was diagnosed with stage 4 Myoblastic Lymphoma T Cell , Non-Hodgkins Lymphoma. Although the doctors at Childrens Hospital told me to keep his life as normal as possible they fought me when i insisted on doing exactly that..David’s counts were taken weekly and he played basketball. I encouraged him to reach out with strength and he did become unruly at times. They questioned my decisions at every corner in every move. David is 23 yrs. now and I am proud to say he is quite fearless. I wish i could say I still have that fight. I look back and wonder what gave me the strength to fight the doctors. To follow my instinct. To create a plan. At the end of his treatment, his doctor asked if he could use David in a journal as an experimental example. Of course..

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