Picture it… 10 years ago, 5AM was a startup and the genome had just been mapped. Anyone who was paying attention knew -- just knew! -- that as surely as Mercator revolutionized the way the West saw the world, the newly mapped genome would usher in the next age of science and medicine. Software developers were thrilled at the prospect of wrangling all of that free-floating, wild genomic data into useful, meaningful information. A thing of beauty, to be sure!
10 Years Later...
We didn’t exactly get the new dawn that we were hoping for. Over the past ten years, the data have grown and become even more unruly. The sheer amount of it spread across countless media in far-flung locations is mind-boggling.
Of course we’re optimists, and with good reason. In 2013, we participated in Pfizer’s Blue Button Plus initiative. That project is a tremendous step toward facilitating conversations among Pharma, doctors, and patients that can lead to better health outcomes for all of us. Blue Button puts the data from clinical trials into participating patients’ hands and does so electronically. Here are five things that we’ll be striving for this year with regard to dynamic consent.
1. Patients = Participants
Smartphone technology had made all kinds of information using all kinds of media available right in people’s pockets. We’re looking forward to seeing that technology used to decrease administrative time and improve protocol accuracy and understanding.
2. People ♥ Science
Just as people are motivated to donate blood to the Red Cross, increased understanding, awareness, security, trust, control, and infrastructure will make people comfortable sharing their information with science.
3. Science ♥ Medicine
[In my best Ron Burgundy voice] “Science is a thirsty beast!” To quench the beast, science will have to do a better job of harnessing information and applying it to individuals. Dynamic Consent gets the dialogues between people and researchers started … directly… for really the first time systematically.
4. Medicine ♥ Participants
The right treatment, for the right person, for the right reason, at the right time requires the right data (yay!). The bench to bedside and back concept popularized when we began can be distilled into “decision support” for many parties –what drugs to make, what drugs to market, what drugs to prescribe and what drugs to take.
5. Ongoing Conversation
Dynamic consent applies to more than data. Blood given, biopsies taken, samples of all kinds will be granted to the control of the person. This interconnectivity will allow for researchers to actually ask questions they hold back on because it’s to hard to “re-consent”. That consent can be sustained and, in our view, should be simple enough to be passed along to whatever provider the owner chooses.