Patient power: From technology to treatments
How self-tracking systems can improve clinical trials
By on May 16, 2011An enhanced process of clinical trials is emerging.
Small, exclusive, formal data sets, limited experiments, and narrow questions requiring rigorous measurement can now evolve from large populations, able to quickly quantify themselves with what would have been an inordinate amount of data, and without the necessity of travel.
Collecting and measuring information from our body's ten organ systems is a new, inclusive frontier. Each of our lives offers a potential contribution to scientific insight. We go about our days, making choices, eating, taking medications, exercising and generating what has been called "data exhaust."
Health 2.0 and now mobile technology, which has been called Health 3.0, gives us the tools to explore the inner workings of our bodies while keeping us at the center of our own healthcare and allowing us to pass on our recordings to whomever we see fit. (For more on Health 2.0, see ‘Future pharma: Making games work for pharma'; for more on mobile tech, see ‘Pharma goes mobile: Making the most of the app opportunity' and ‘Future pharma: Making the most of the tablet takeover'.)
This ability to mine our personal health data is the ‘technium' at work.
Technium, the name coined by Kevin Kelly, the co-founder of Wired Magazine, includes "the generative impulses of our inventions to encourage more toolmaking, more technology invention and more self-enhancing connections."
Kevin is running Quantified Self 2011, a conference bringing together global users and toolmakers interested in self-tracking systems and ready to explore the potential effects of self-tracking on themselves and society.
The technium informed Sergey Brin, the co-founder of Google, that he has a gene for Parkinson's disease. His pro-active reaction could be compared to giving Jackson Pollack a bucket of paint. No one doubts Brin is now using the technium to research and develop a cure.
He began by contributing $4 million to fund an online Parkinson's Disease Genetics Initiative through 23andMe (his wife's company), calling for 10,000 people diagnosed with Parkinson's to pour personal information into the database.
This data can be quickly tracked and computed, allowing for meaningful associations. Designer infographics are coloring and clustering our information in new ways. Leave it to the choreographicers (new word) at Google to make our data dance.
At our cysticfibrosis.com site, we are set to use Google Globe to show the aggregation of important information, such as where our members are from, whether they are a patient or a relative, and their CF-causing genetic mutations.
According to Francis Collins, NIH director and genome expert, some 200 diseases have commercial therapies while 7,000 have little or no commercial development. Through the technium model, treatments for the 7,000 may be more easily facilitated.
Developers on the receiving end of this treasure trove may agree with the poet Mary Oliver, who wrote, "Do not walk by, without pausing to attend this rather ridiculous performance, it could mean something, it could mean everything."
Patient advocate Jeanne Barnett founded the e-patient community at cysticfibrosis.com in 1996. For more information, see Medrise.com. For more from Jeanne Barnett, see ‘Future pharma: The home as healthcare center' and ‘How Quick Response codes can help pharma engage with patients'.
For more on patient power, join the sector’s other key leaders at Customer Centric Marketing on June 27-28 in Philadelphia.
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