Healthdame Empowering Patients in the New Health 2.0 Era

New Movement Tries to Give Patients Back Their Medical Records

An impressive list of health geeks and supporters of patient empowerment have launched HealthDataRights.org, a new blog that seeks to ensure that patients regain control of their data.  Most people don’t realize it, until they try to get a copy of their medical records, but patients have no inherent right to the information that providers keep about them.  The growing “patient-centered care” or “participatory medicine” movement is hoping to change that.  You’d not only get easier access to your own medical record, but you’d able to check the sources of the information in it and use it to find your own answers to your medical problems.

Some of the more famous names promoting the just announced Declaration of Patient Health Data Rights are Adam Bosworth, Esther Dyson, Dr. Alan Green, Peter Neupert, and Tim O’Reilly.  Organizations backing the movement include Microsoft, GoogleHealth, 23andMe, Patients Like Me, and Faster Cures.

The idea that patients are wrenching their records back from the hospital and doctors’ office vaults where they are so well protected has some people wringing their hands.  “I’m sure you know that as soon as we have access to our health records, they will no longer be secure,” one M.D. has already commented on the HealthDataRights.org blog home page.

Security is obviously a huge issue, but most experts feel that the majority of our medical data is already extremely vulnerable.  Remember the Express Scripts Data Breach that occured last November?  And, as I just wrote, poor Farrah Fawcett had to endure the indignity of having her medical record regularly perused by a UCLA Medical Center staffer who then sold choice bits of information to the National Enquirer.

I think that for most people who are ill, getting ready access to their own medical record is actually much more important than protecting their privacy.  You can’t shop around for a new doctor, do your own research, or get a second opinion without your record.  Patients and caregivers spend inordinate amounts of time waiting for copies of records and then shuffling them around.  And how often do you get to that appointment and they say “Sorry, we didn’t get the record yet.”  Even worse, what if there’s misinformation in your file?  It happens, and the consequences can be dire. The whole medical record process, as it stands now, really seems Medieval.

So, HealthDame salutes the Declaration of Health Data Rights, and the following patients’ rights that it endorses:

1. Have the right to our own health data
2. Have the right to know the source of each health data element
3. 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
4. Have the right to share our health data with others as we see fit

This is a key cornerstone in a completely new paradigm for health care, where patients can stop feeling powerless and start taking both more control and more responsibility.  Bring it on.