As the November 2010 HIMSS Virtual Conference closing keynote, John Halamka recently posted on his blog, “30 years ago, publicity was expensive and privacy was cheap. 30 years later, the opposite is true”( http://geekdoctor.blogspot.com/2010/12/publicity-is-cheap-privacy-is-expensive.html).
In today’s world, we all have sliding scales of concern about keeping our online lives and our digital data private. For instance, I am happy to pass along links to the HIT news items I read by tweeting them (@AdamBazer_HIMSS), but I would be less than pleased if my latest cholesterol stats from my most recent physical made it into the cyber sphere, if for no other reason than it would make it harder for me to post about the great bacon cheeseburger I just had for lunch.
- So how do we keep our digital selves healthy?
- What are the limits of data we are comfortable with making public?
- When do our individual concerns for privacy outweigh the benefits of including our information in aggregate public resources?
For patients on sites like PatientsLikeMe, the tradeoff seems simple upfront: give up personal information on their chronic diseases and gain a support network of patients with the same disease. Beneath that simple transaction is one less noticed, where the de-identified aggregated data that is collected by PatientsLikeMe is sold to drug, device, equipment, insurance, and medical service vendors. (http://www.patientslikeme.com/help/faq/Corporate#m_money).
Does the value of the patient support network equal the value of including your individual data in an aggregated data product? Are individual breakthroughs by patients finding out about a treatment someone else received that provided them relief to their condition equal in value to the breakthroughs gained by the vendors who utilize the data product the company sells? Is this an individual’s call or should there be laws enacted to make these decisions for everyone?
I personally see value on both sides of the equation a site like PatientsLikeMe proposes; there is no guarantee everyone else will.
As Amy Cueva mentions during her November 2010 HIMSS Virtual Conference presentation, “Communities of Care: Promoting Healthy Change through Social Media”(http:www.himssvirtual.org), it is easy to imagine the health data that can be collected through a technology like the smart toilet (http://www.oprah.com/health/Life-Extension-Technology-and-Tissue-Regeneration/7). But how do we all ensure that this data is protected? Having this data out there in the digital ether may give one pause. Imagine what a Facebook status update would look like: “Bob is currently eating too much dairy”…
We live in a time of more questions than answers. An organization like PatientsLikeMe has only been around since 2004. Facebook, where so many of us share personal data, health-related or otherwise, was founded in the same year. HIPAA, with its goal of protecting patient data, wasn’t fully implemented until 2003.
If these technologies were people, they would only be in first grade at this point. Six or seven years later, we are still only learning to integrate these technologies and rules into our daily interactions (I still have a hard time updating my profile pic on Facebook…), let alone having an understanding about how our digital health data should and can be integrated into social media networks.
As a HIT professional, I spend each day helping to educate other HIT professionals on the latest technologies, processes, and efforts to migrate the nation’s health data from a paper based world to a digital one. I overwhelmingly believe in the benefits to a fully digital, fully integrated healthcare environment. But I believe that all HIT professionals need to spend a moment to check in with themselves, to “take their temperature,” on their own comfort with sharing their health data online.
Until we ask and answer that question for ourselves, how do we expect non-professionals to answer those questions for their own data?