With the gradual demystification and developing transparency of the medical profession, and doctors’ loss of their once absolute, priest-like authority in their opinions, the 20th century witnessed a change in the assertiveness of patients. Reflecting the freedom of discerning consumers born from capitalism’s rise, healthcare service users began to exercise their option to their physician’s decision, opting for second or third opinions without having to turn to chewing roots and massaging Chakras as an alternative.
Salvatore Iaconesi, robotics engineer, open source artist and TED fellow, when informed that he had an inoperable brain tumour by his neurologist earlier this year decided not only to get a second or third opinion but dozens, potentially millions. He brought his clinical records with him, and achieved the impressive feat of converting the data from its heavily-encrypted state to a form legible to the world, and published them on a dedicated website, ‘La Cura’ or the ‘The Cure’, inviting the viewers to browse them and contribute their opinions, share their experience or reflect on the project.
Using the freedom granted to us by Iaconesi, even we could peruse the intimate details of his medical records with an unsettling ease akin to peeking at a Facebook profile, granting a rare opportunity to access the thoughts and terminology of a pathologist, demystifying the diagnostic process with the aid of a medical (and an Italian) dictionary. The tumour currently residing in his brain is known as a low-grade glioma, a term describing the proliferations of the various lineages of supporting or non-neuronal cells of the brain.
Such a diagnosis is often damning, with such tumours being impossible to remove entirely by nature, however the low-grade classification here indicates a hope for surgery. In his mission to share this experience, and find alternatives to surgery, or even the best method for resection of the tumour, the site garnered an unprecedented response. Over 15,000 testimonies have since arrived from past and present sufferers of the same brain disease sharing their experiences, 60 doctors have made contact with Iaconesi, 40 of which were soon accompanied by accounts from previous patients vouching for the their ability, 600 poems have been composed for Iaconesi or about his condition, an electronic ensemble have performed a concert against a backdrop of his projected MRI images, a model of his glioma has made it Second Life and anyone with a 3D printer can obtain their own physical replica of the neoplasm from Thingiverse. Already this has roused the Italian government to rethink the current obstacles patients are faced with when they attempt to view their own medical records .
Crowd sourcing in the medical world pre-dates Iaconesi’s site however. Curetogther.org was established in 2008 and has since accrued over 25,000 member, sharing their data on 576 medical conditions allowing such information as prevalence of certain features of a disease, methods of alleviating chronic pain and possible treatments and their associated hazards, thus not forcing patients to take their doctor’s for it while 23andMe is another company based in California that is acts a resource for sharing medical data that might normally reside in hospital databases and presents it for public consideration. This time they are focusing on the human genome and attempting to make it fully searchable; granting you, for a fee, the power to ‘Be Your Own Advcate’ as the homepage states. It grants insight into users’ genetic code and risk of inherited disease with a single saliva sample, while documenting and consolidating information regarding the conditions they already suffer, their lifestyle, and other details, providing a potential powerful resource for research, something that the site encourage the public to carry out.
They recently obtained the first patent for determining user’s risk of Parkinson’s disease, and its recent acquisition of the aforementioned CureTogether will surely yield information concerning the relationship between the genetics of person and the conditions they may or may not afflicted by a consequence. While to be used for data, the verity and accuracy of this data must be regulated, and is an issue which has yet to be addressed.
Regardless of the efficacy of these routes taken by patients, their very existence, like the malevolent black lesion on Iaconesi’s MRI and his reports of focal seizures, point towards a significant malfunction: the conventions of the medical profession in general. What is it about the normal avenues of medical care that deter some? In his recent TED talk, Iaconesi explains that he felt that he lost a degree of his humanity through being processed by the health service. “When you become diagnosed your life changes, it becomes a procedure. You are replaced by your clinical records and while [these records] are talking about you, they are not talking about you. You disappear as a human being.”
By contrast in this project Iaconesi says, not without pride, that in the dialogue between past patient, poet or physician that “Everyone is feeling part of a human society, not just dealing with a patient”. These developments need not be seen as the alternative to following the normal procedures of obtaining medical care however, but rather tools with which the medical science community can perhaps restructure their methods of obtaining and delivering data and alienating less in the process.