medical record trapped
Control your own medical data? Try it!

May 5, 2010 -- I am one of those "empowered" patients. I labor under the illusion that I retain some control of my medical data.

Try it yourself -- run this little experiment:

  1. Next time you get an order from your doctor for a routine lab test, have him or her write the following instruction on the order: "Send results directly and only to patient."
  2. Make sure your mailing address and fax number are included.
  3. Then find a lab that will perform as ordered. Good luck!

Here in San Francisco I went to three different retail clinical labs before I found one that was willing. And even so it took some arm-twisting and remonstrating to convince them that yes, they should do exactly as the order said... no, they should not send the results to the doctor... yes, they should send them (only) to me... yes, it's legal... yes, my insurance (Blue Cross) would reimburse as usual... no, it's not a violation of anything, and... it shouldn't even be unusual. Yet it is.

Get with it, people! Take possession of your own data! Insist on it! Of course you should share it with your doctor. But it should be yours to share, in your control. Our being empowered patients shouldn't be unusual. It's time for the labs (and everyone else) to get used to us!

Postscript (two weeks later): Surprise. The lab completely ignored the instructions and sent the test results to the MD. I have filed a HIPAA violation complaint. Here are the instructions and forms on the web site of the U.S. Department of Health & Human Services in case you, too, need to do this. Stay tuned... I'll record any progress right here on this page.

 
Post-postscript (two months later): The Dep't of Health and Human Services replied to my complaint. They pointed out that the law says that clinical lab test results must be provided only to the licensed health care provider who ordered them. So the lab, in defying my instructions was "right"... it's the law that's wrong! Not only does the patient not own the data, he/she doesn't even have the right to see it unless the MD assents. Disempowerment gets no worse than that. Broken laws? Let's fix them!

Table of Contents