Declaration of Health Data Rights

Posted on June 22, 2009 I Written By

John Lynn is the Founder of the HealthcareScene.com blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of InfluentialNetworks.com and Physia.com. John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

Today I came across an interesting site which is calling for people to support a “Declaration of Health Data Rights.”  Here’s the basic declaration they’d like people to support:

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.

Pretty interesting stuff they’re trying to accomplish. I think this concept is really great. I just hope that their zeal doesn’t overstep and make releasing a patient’s information an enormous burden on a doctor’s office. Seems like you could do so without too much trouble, but it can get out of hand if people aren’t careful. Luckily, those who have an EMR or EHR in their office should be at a big advantage in this regard.