Your Health Data Rights

This morning, I read an email from Regina Holliday. It sent chills down my spine. I wrote a post a few weeks ago about her husband’s inaccessible personal health data. I barely touched the surface of the story in that post. I hesitated to write more because Regina, in addition to being a talented artist, is a powerful writer and poet. No one can tell her story like she can.

And she has officially spoken.

At the same time, thought leaders across health care have spoken through the launch of HealthDataRights.org, which goes live at 9pm EST on June 22, 2009. The premise of the site and following declaration is that people have a right to take responsibility for their own health information and care. The Declaration of Health Data Rights reads as follows:

In an era when technology is allowing 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 in the record
• Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if records 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.

Regina’s announcement and the timing of the Declaration of Health Data Rights is a coincidence. Or is it? Have things really come to a point where so many people are thinking and saying the same thing at the same time? This is a historical moment in health care. June 22, 2009.

Regina Holliday is a DC-based medical rights advocate. She is currently at work on a series of murals depicting the need for clarity and transparency in medical records.