The Social Health Record
Written June 25th, 2008 by Seth YoungThere isn’t much in my wife’s Personal Health Record that hasn’t been shared on the Internet. When she became pregnant two years ago she decided to use the web to learn as much as possible about the wonderful and terrifying uncertainties of pregancy. She participated in the WebMD message boards with other women, candidly sharing her difficulties and observations in a very public forum. The women that made up her community on the boards were from all over the country. They had different ethnic, economic and social backgrounds. Their perspective differences ran the gamut. But pregnancy was their common ground.
There has been a lot of debate about the marriage of PHR and EMR. How much access? Who owns what? What’s the cost of Security and privacy. All the while Google and Microsoft are competing for our trust. But there’s another peculiar side to this equation: those of us who already entrust our personal health data to the public at large.
We have surrendered our privacy in exchange of membership in the Community of Care. Our gowns are open to the public eye.
Yes, we want to make our warts public. We gladly share our toe-nail fungus, bad breath and brain tumors with the world. Making personal health public seems ridiculous, exhibitionist and even dangerous at first. But the more I think about it the more it makes sense. And it’s exactly what many people have already done and want to do.
The culture of self-diagnosis that has grown up on the Internet has been shadowed by “Peer Diagnosis.” As many healthcare consumers seek to educate themselves online, they also use the web to share their personal health info to solicit opinions, share experiences and gain support from others. We see this in blogs, message boards on WebMD, CancerCompass etc. We also see this in the “CarePages” model, where users can record their health journey on a profile page to share with friends.
The question is why do so many people choose to publicly share their health story in light of all the hubbubb about protected health information?
One answer is: millions of dollars are spent on health IT security and that bill ultimately gets paid by the consumer. Privacy is a product that we pay for. Privacy is a product that is marketed, advertised and commoditized. The more precious it seems the more demand… the more demand the higher the asking price… you get the idea.
Another, less cynical, answer is: Our health care system is fragmented by different payer strategies and competing treatment options. It makes perfect sense that consumers would reach out to the community to help them discover the best options. In the process they may have to share some information that once was guarded, but in doing so they may find some connection, some feeling of care that is missing from our system. I see this very “Social Health Record” as a powerful tool in healthcare decision-making and support. Sadly, it is also the least likely space you will find a doctor or insurer offering to provide assistance.
Our waiting rooms are quiet places full of quiet people. Patients often come alone and seek a chair or two away from the next patient. They sit anxiously contemplating how they feel, nervously thumbing magazines, anxiously awaiting their name to be called, frustrated by a lack of control that their medical conditions impose upon them. They may feel like crying out, but they are quiet nonetheless. We are taught that the waiting room is a place to keep to yourself. We are taught that our health is a private matter, and this extends to public policy and corporate strategy.
By contrast the online community that my wife belongs to is anything but quiet. Her Social Health Network has been an ongoing source of advice, support and comeradery when she needed it. Through it she also offered her own practical experience and wisdom to others. The bonds she has formed are a very important social network for her. In a couple of weeks we are travelling across the country to meet in person some of the friends she made online.
I know that the value of the Social Health Record I am proposing springs from the principle of choice. We can decide what and how much to disclose. We can even author our identity to protect us when necessary. For many good reasons, our vaults of health data need to be protected.
But I wonder what cost this debate has for us as a society and industry. Are we so focused on security and privacy that we are reinforcing the sense of institutional sterility and isolation that Health 2.0 is supposed to cure?
