I have been following your story and the many comments that have been made in different blogs. First, I am not surprised, unfortunately, at your experience. I witnessed some of this, only on paper, working with my ill father who had records both with the local VA hospital and with private practice physicians. We had to be on top of irregularities and inconsistencies as to his current and past treatments as well as diagnoses so that all parties were properly informed. Had we tried to convert those over today on my HealthVault account, we would have probably experienced something similar to your story.

I agree that an informed patient is invaluable to the healthcare process. I have seen a couple of comments from physicians on other blogs who have figuratively “shuddered” at the thought of having their patients have complete access to their medical records. I am sure that there will be some patients who would prefer to defer to the doctors, not desire to have the responsibility of maintaining their records and leave it at that. I think that there are far more who would.

I also enjoyed Gilles’ recent post. There is a lot to be said about personal health records, and I’m glad the conversation is going. Keep it up!

Gilles Frydman (one of our bloggers and senior members here) led me today to a very informative post by Microsoft’s Peter Neupert, the guy at the top of the HealthVault project. It’s titled Tear Down the Walls and Liberate the Data.

Please join us in this initiative. Subscribe to our posts in the box at top right, if you wish.

I have to admit to you that I am shocked on several levels by what you have to say and by what has happened to you, for these reasons:

I have suffered from a complex facial pain condition for more than six years. During that time I obtained almost all of my records from each and every treating medical provider (at least 30) and I rad them in their paper format. I obtained all of my records so that I could pass them on to each new doctor and also so that I knew what was and what was not in them. Finally, I needed them to try and track down an effective treatment to what was considered an untreatable condition.

Secondly, the reported diagnosis codes were probably no more than six–but the writings in my records as with my conversations with my doctors–showed far more, and the most important diagnoses. Therefore, I would not expect–nor can I imagine that doctors would expect, that simply by sending DX codes that my health history would be covered.

Thirdly, my records not only show dates and who made what DX, they also show valuable information on treatments, meds, etc.

Fourthly, at best, my records were incomplete. I therefore, developed my own form that I wrote out to specify, in bulleted form under specific headings that grouped this info. for easy access by the doctor, my own data. This is part of my record, but it would never appear if my DXs were merely sent.

Finally, like you I also work with data in my day job, I’m also a writer and I have NO medical experience, but as someone who found a medical solution to what nearly 30 healthcare providers thought was an irreversible, degenerative pain condition, I relied heavily on my medical records–both those created by my heathcare providers and those that I created.

Finally, I’m unclear as to why it is so difficult to obtain information that is entered in a complete form, and transmit that information to a third party database. There are technological solutions that can take input electronic files and retrieve the information contained in these files, classify that information, and return results–such as a diagnosis with dates.

I’d appreciate your comments, obvioulsy I’m new to this discussion, but I’m an active member of several patient groups….

Pat