Text: Béatrice Schaad, chief editor
Photo: Patrick Dutoit

Are digitised patients being exploited?

Slogans such as “Our experience fuels innovation” and “Together, let’s change medicine” are now emblazoned on websites that allow patients to share their experiences.

These catchphrases certainly have an activist ring to them, seemingly indicating a shift from political engagement to a new form of medical citizenship. “Time for Outrage” was the title of Stephane Hessel’s million-copy bestselling tract. But the new battle cry among those who willingly divulge details about their treatment or DNA to millions of readers might be “Time for Telling All”. These digitised patients are creating what could be dubbed a true “scientific participative democracy”.

One thing is certain: though this online activity does benefit patients by offering them a support network as they struggle with their illness and the complexity of the health system, it radically alters the doctor-patient relationship. The physician in Tolstoy’s “The Death of Ivan Ilyich” was an omnipotent figure, but doctors now deal with patients who are experts in their own health and who can check diagnoses by consulting with hundreds of thousands of other sufferers. What’s more, today’s homo scientificus monitors his health continuously, measuring his heart rate, the proportion of fat in his blood cells and even timing his sleep to the nanosecond. Last but not least, this new take on medicine inevitably impacts confidentiality, the Holy Grail of clinical practice. The Millennial generation, which grew up with the Internet, has no qualms about publishing the most intimate details of their life. Naturally, this includes information about their health.

But patients aren’t the only ones revealing their data to the public. Scientists are doing the same thing.

But patients aren’t the only ones revealing their data to the public. Scientists are doing the same thing. By sharing knowledge, instead of keeping it separated between laboratories, unexpected progress could be made in research and clinical practice. That’s the hope of the teams involved in the Human Brain Project, which aims to simulate the functioning of the brain on a supercomputer.

But with greater transparency comes new requirements. Data must be managed with the utmost care and, above all, it must actually benefit the patient. A lot is at stake right now, with financial and confidentiality issues being the most important. The PatientsLikeMe network, with 250,000 contributors, has established partnerships, under the guise of research, with pharmaceutical companies such as UCB, Novartis and 23andMe, which markets genetic profiling kits. One of the potential dangers is allowing this data to become just another consumer good, as patients benefiting from this experience-sharing would have to disclose vital information about their own health in return. Big Data needs a framework, and it needs one quickly, so that digitised patients don’t end up as exploited patients. ⁄