Finding out what has been prescribed to a patient is one thing. The other is to find out what he’s actually taking. There might be a substantial difference. Of course sometimes I’d like to hack into some drug history database, to find out which brand the obscure little red pills might be.

From my point of view, health IT often is designed to satisfy administrators, not doctors. And huge collections of personal data offer greatest benefit for administrators and companies, not doctors. Not to mention patients.

What was the point in looking for data on John Doe who neither can remember his name, nor his 11-digit access code, again?

Behavioral Healthcare magazine had a special section on PHRs over the summer. See (it’s a long link): http://www.behavioral.net/ME2/dirmod.asp?sid=9B6FFC446FF7486981EA3C0C3CCE4943&nm=Archives&type=Publishing&mod=Publications%3A%3AArticle&mid=64D490AC6A7D4FE1AEB453627F1A4A32&tier=2&did=6F59AF9C1DD84FE691FE6DB7476CA209&dtxt=August+2008

I think that the key question is about the extent in which we will allow someone to do data-mining on those records.
In a few years we will get DNA testing for very low prices that allow us to have the DNA for a lot of people in those online records.
There is a huge interest for people who are searching which gene variations have which effects to get access to those big data sets which index millions of people.

The commercial interest to data-mine those records is too big to expect people to completely stay away from that attempting to data-mine.
One we have those big data sets it might become easy for some lobbyists in Washington to promise to be able to cure cancers if they can use those huge data sets to increase our knowledge about cancer.

We need to have a discussion about what privacy entails and the price that we are willing to pay for the privacy. We need to know both the monetary price and the number of deaths that we are willing to allow to occur by not doing more radical data-mining to increase our knowledge of the human body.

Christian-

The potential for research is definitely huge if we were to get all this health information online, but a simple solution would be to only allow data-mining to be done in aggregate, with individual personal identifying information stripped away. The same sort of database already exists for the spinal cord injured and traumatic brain injured populations in Europe, as well as in the United States with the Framingham database for the study of heart disease.

Data mining is often done for the purposes of aggregate reporting. All the private health information is depersonalized, and this information is often evaluated by managed care plans and other interested parties such as pharma/biotech interested in market research.

DNA is private information.
If you know height, weight, eyecolor, haircolor and hundreds of other factors about a person you might identify them without knowing their name.

In addition someone might run a DNA test against a person he knows in a 1000$ DNA test world to be able to access their medical records (you don’t even need to know the whole DNA).

You can’t really depersonalize DNA without losing valuable information.

There will be people who want to use every information available and use supercomputers with very complex algorithms to learn something from the data and compare how hundreds of variables influence each other.

As mentioned earlier, having information online available for MD’s caring for John/Jane Doe is not effective until a patient can tell you who they are (verbally or via ID), this of course depends on the information being accurate (not an alias).

Only when online personal medical information is held to the same standard of privacy as medical records in a hospital, and same security as bank accounts, would I ever subscribe to it. As mentioned by other comments, its important to examine whom this service is intended to serve.

I found this an excellent post on a very professional blog, and have selected it as an Editor’s Pick in the latest Carnival of Personal Development (Edition 3). Great job spreading awareness of PHRs and getting people to think about how far this should go.

PHR (Personal Health Record) is an invaluable tool for tracking vital records and creating a medical history of your general health over time. Maintaining good health is too important to ignore, and this personal health record is an easy to use portable health care supplement. Foods supplement Proleva controls my PHRs and maintain unwavering. I ordered online at http://www.proleva.com 10-day trial pack.