If you've ever had to work through even a slightly complicated encounter with our health care system - you know what it's like. You become a combination archaeologist, file cabinet and pack mule, begging providers for copies of your own images, lab results, medication lists, and encounter notes, then trying to make sure they're in front of the right people when decisions are made. Really, it's just nuts.
Tools like HealthVault help solve part of this problem - we are working hard to build connections to all of those places where your data lives, making it easier to create a comprehensive data asset and share it with all the members of your extended care team: providers, family members and, increasingly, innovative consumer services that use the power of software and social networks to create insight.
But in order for software to matter, our culture and attitudes need to change too. As I travel around the country working to help organizations share data with individuals, I consistently hear objections that reflect that challenge, even though HIPAA already says they are required to share on demand:
- People won't know what to do with this information; they need providers to filter it for them.
- If people see the raw data, they'll overwhelm providers with irrelevant questions.
- Sharing information could increase liability risk.
- Misuse of "their" information could damage a provider's brand.
- Sharing information gives away a competitive advantage to a provider's business.
- ... and more.
Right now, there are tons of policy "concrete" being poured into our healthcare system, thanks to ARRA and President Obama's push for healthcare reform. Before that concrete hardens, it is critical that we firmly establish complete access to one's own health data as an unassailable ethical and moral human right.
This is why I was so excited when I was invited to join the group of thought leaders across healthcare working to establish a Declaration of Health Data Rights at http://www.healthdatarights.org/. The text of the declaration is clear, appropriate and extraordinarily important to the advancement of effective care in our country and beyond:
In an era when technology allows personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:
- Have the right to our own health data
- Have the right to know the source of each health data element
- Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; If data exist in computable form, they must be made available in that form
- Have the right to share our health data with others as we see fit
These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.
Microsoft and I wholeheartedly endorse this declaration and are proud to be part of a growing community that recognizes its importance. If you would like to add your voice to ours, you can get started by visiting http://www.healthdatarights.org/.