It seems inevitable that the future of medicine is also trending toward convenience and crowdsourcing. For several years now, individuals have been able to create and maintain online personal health records that are portable and sharable, as opposed to tied to a single doctor or location. Online resources such as Patients Like Me enable crowdsourced self-reported outcomes data. Websites like ShareCare.org crowdsource answers to users' health questions from qualified medical experts including representatives from Mayo Clinic and CDC. Companies like 23andMe rely on collaboration and sharing of individual genomes and medical history to highlight genome-phenome connections that may merit closer scientific investigation. When a critical mass of EMRs are networked, this will enable the sharing of thousands of records of real patient outcomes, and evidence-based medicine will have a brand new, very powerful tool; the ultimate in medical crowdsourcing.
No one can deny that "peer-to-peer healthcare" -- as Susannah Fox of the Pew Research Center calls it -- is a fundamental part of our health-seeking behavior in today's world. Pew reports that nearly 25% of US internet users with a chronic medical condition say they have gone online to find others who might have health concerns similar to theirs. They are primarily looking for education, information, and support from others who have "been there."
But what will the general public decide is the tipping point between the societal benefits of sharing medical data and personal concerns over privacy breaches of such data? Many people already keep a close eye on the privacy settings of their social networks, and most information shared on these platforms is not remotely sensitive in nature (only 9% of current social media users are willing to share health information on these sites). The general public is incredibly opinionated when it comes to online privacy, as Facebook (for one) learned first-hand during the Beacon http://en.wikipedia.org/wiki/Facebook_Beacon debacle and subsequent attempts to monetize user data. There is consistent uproar about the need to limit tracking of online behavior, even though analysis of such data could result in targeted ad-serving that's actually pertinent to a specific person in a given time and place, instead of the irrelevant distraction most ads are currently perceived to be. If we're this concerned about the privacy of our most banal information, anxiety over privacy of our medical data -- even when sharing clearly results in greater convenience to us personally and a significant benefit to greater society -- promises to be much greater.
What level of privacy and control will be the minimum the public can accept in order to keep their most intimate data safe? In a world where evidence of pre-existing conditions can lead to insurance coverage denial, and exposure of having a stigmatized disease has the power to ruin a career, how many people will trust the security of personal online health records, let alone those that are networked?
Which motivation will dominate the rising conflict? Our need to keep private information locked away, or our perpetual drive toward convenience and connectedness? Time will tell as technology improves, transitions to online health records become mandated and widespread, and individuals are forced to take sides.
Marketers will also need to change tack in response to the rising debate. This world of mass connectedness and aggregation of health information, while created to benefit the individual and the scientific community, also provides a new weapon in the arsenal of irresponsible marketers. Unethical uses of crowdsourced data and public dialog have the potential to further damage the reputation of the pharmaceutical industry. Once such abuse is uncovered -- and it always is -- it will spell not only backlash but also public humiliation of the offending instigator.
To be successful, responsible businesses must be respectful and support each individual's outcomes by supplying useful information. It's no longer about pushing a message, but providing support. It's about helping, not selling. The beauty of the new paradigm is that by helping your customers, you are providing a unique service and gaining business while also building goodwill.
As the ongoing debate about privacy versus relevance comes to a head, businesses will have an opportunity to show where their motivations really lie, and whose side they're on. It's up to each one to determine the right way to do that.
Now sit back, and watch the fireworks; it should be a good show.