I sometimes feel like we take one step forward and two steps back as we embrace technology. Because with the advances in providing people with access to their own health care data (including mental health data), there seems to be inevitable stumbling blocks along the way.
Insert your data into Company A’s personal health record or electronic medical record and you’ll find no easy or accessible way to get it back out. Explore the health data kept by your hospital about you and you may find important pieces missing, or just plain wrong, with no accountability or record of who put that in there.
Want to get Doctor XYZ to see your health data? Be prepared to sign a release and then play the waiting game.
Better yet, want to get a copy of all of the health data kept in your records for yourself? Good luck trying.
You’d think people would already own the data about themselves. You’d especially think that would be true when it comes to data about your health — data that really only you would be interested in.
Introducing the Declaration of Health Data Rights, a simple statement of fundamental patient rights:
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
- 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.
I believe in the Declaration and wholeheartedly endorse these rights. I believe that every health (and mental health) care provider, organization, hospital, medical records company, and any one else having anything to do with our health care system should do the same. We have the fundamental right to our own health data, and nothing should stand in the way of that right.
Visit the site now: HealthDataRights.org
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Links to This Article
You Have the Right to Your Health Data | World of Psychology | health (6/23/2009)
echoblog: Declaration of Health Data Rights « Genes to brains to mental health (6/23/2009)
What are Your Rights to Your Health Data Information? « Chronic Illness & Pain Support (6/28/2009)
2 Comments to
“You Have the Right to Your Health Data”
This is a profound and compelling post. I’m certainly on board. At icyou.com, we really don’t have anything that represents the ideas you offer here. If you know of any video(s) that reflect and talk about your views, we would be interested in hearing about it. Again, great post. I’m eager to see these thoughts gain import and momentum in the politics of health care. Thanks, Kevin.
When you see a physician, are the files for your case his or hers, or are they yours? You would think that you would own them, given that they are about you, but they also contain intellectual property, the diagnosis and notes, that are the physician’s. It’s a good question. Individuals can create their own personal health records in HealthVault or Google Health, but they are somewhat incomplete without all of the histories from various doctors. I agree that we should have the right to copies of our health data, and at little or no charge. Heck, just to have my son’s immunization record “authenticated” by the doc’s office so that I could send him to camp cost me $5. Just to confirm that he was up to date on his shots. Silliness.
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Last reviewed: By John M. Grohol, Psy.D. on 22 Jun 2009
