(worth reading) From P0 to P6 medicine, a model of highly participatory, narrative, interactive, and “augmented” medicine (patient/social media/cure)

Blogger's Note/Opinion: worth reading; not related specifically to ovarian cancer but to a patient's progressive social media action

open access
  
"... Involving patients in the health care process is an added value, as patients have a unique knowledge of their own health status:1 this is the so-called theory of the “expert patient,” that is to say a model of a patient that knows himself/herself better than a physician could, and one who has a tacit and implicit knowledge of his/her disease could more properly interact with the physician and take part in each step of the therapeutic process.2,3 In fact, shared medical decisions have been proven to result in better therapeutic compliance and clinical outcomes.2–4........However, mere consultation is often mistaken for negotiating and interactive partnership, and thus the patient still holds a passive role.8.......

"Salvatore Iaconesi is a talented computer scientist and a skilled and polyvalent artist who was abruptly diagnosed with a brain tumor, and from one day to another he found himself experiencing the tragic odyssey of cancer.16 Since “my tumor is also an opportunity” (as other oncology patients have said in their narrative stories),17,20 and since computers and art are all integral to his life, he surprisingly decided to share his medical records with everybody on his website.21 However, his clinical records were in a proprietary format file, so he had to crack them as a hacker. Like an open-source software that is easily available on the public domain, users can freely download, edit, or reuse these records; he thus wanted to make his cure an “open-source cure.” Not only doctors, but literally everybody, can consult his data, grab information on his disease, share his pain, and even find him a cure.....