HealthVault: Failing the seven generations test

(note: This is the first of my “week of HealthVault” articles.)

HealthVault, the new Personal Health Record (PHR) from Microsoft, along with Googles coming PHR offering, fail the seven generations test.

I did not come up with the idea of “seven generations”, pay attention the next time you go to the grocery store and you might notice a brand of laundry detergent called seventh generation. The company behind the product got their name from a suggestion by a Native American employee that they follow the principles that lead the Six Nations Iroquois Confederacy . The council of the Iroquois considered how any decision would impact the next seven generations. Lets see how the principles apply to health IT.

My mother died of ovarian cancer. My grandmother took a drug while my mother was in utero that increase the chances that my mother would get ovarian cancer. Any consideration given to my mothers genetic propensity to get cancer must take into account this environmental influence. My daughters and grand-daughters will inherit my genes, and perhaps some risks for ovarian cancer that my mother passed on to me. As my granddaughters make life choices based on their genetic propensities, they must take my grandmothers medical records into consideration. My grandmothers medical record will remain relevant for at least five generations.

Lets consider DNA. Our understanding of DNA is only relevant in the context that DNA causes health conditions in the real world. We will not be able to understand DNA sequences fully until we have compared them to medical records over the course of several generations. My great-great-grandchildren need copies of both my medical records and my DNA sequence. Until we can pass these kinds of insights to our progeny we will not have realized the potential for DNA research.

How long should we be keeping our electronic medical records? We should ensure that they are available for the next seven generations. Assuming one generation lasts for 100 years, that means 700 years of storing digital records. Many academics think that a “generation” should be defined as 20 years but this does not work here. If I develop arthritis in my 20’s that fact is medically relevant for my great-great-great-grandchildren in their 90’s. 100 years is a whole life-time and also makes for easy math. In any case, all of my points are still relevant if one counts a generation as 20 years or 50 years instead of 100.

A private, for-profit, corporation is an inappropriate storehouse for records that the next seven generations will need. Corporations do not last long enough. Consider the Dow Jones Industrial Average. Of the original 12 companies that made up the index, only one is still listed: GE. Some of these original companies were taken private, some were merged, some were destroyed. That is the course of the largest companies in the United States over the course of a little more than 100 years. The Honorable East India Company was founded in 1600 and dissolved in 1858. In 1700, however, it was one of the most trusted companies in the world, with a monopoly on par with Microsoft’s. Now the East India Company is no more. Someday Microsoft will go away too. Perhaps Google will buy it in 150 years, perhaps it will go bankrupt in 200 years. In any case Microsoft will not be in business in 700 years. If Google had released its PHR first, this article would have been about them. The Google “do-no-evil” motto is probably the best corporate motto I have ever heard of! Further it is obvious that Google takes this very seriously, as evidenced by their refusal to offer email service in China, a decision that will eventually cost them billions, but separates them from Microsoft and Yahoo. They still censor in China, but at least Google is thinking about the problem in the right way; from a moral perspective.

However, the Google motto is not “do no evil for the next 700 years”. This not about “which” company is acceptable for the stewardship of medical records. NO company is qualified. Even Google will not be around in 700 years.

But this is still Microsoft we are talking about, which all things being equal, is especially bad. Microsoft has a history of abusing standards, and using those abuses to enable and extend its monopolies. In short they have a history of “being evil” in exactly the sort of way that we cannot afford to have impact our healthcare records.

Making a big deal

Sometimes I wrestle with how to communicate my feelings on the medical licensing. I view medical licensing as a moral issue. Some proprietary vendors get really offended by this view. Others see my point as I intended it, to place medical licensing in the moral sphere instead of the practical sphere. I recently posted over on GPLMedicine.org comparing the use of GPL Medical software to living off the grid. Just because we cannot be perfect does not mean the issue is not a “moral” issue.

-FT

Meeting Dr. Winn at e-MDs

I just had a great meeting with Dr. Winn over at eMds this week. Dr. Winn and I have been in discussions for months regarding how e-MDs might be able to leverage Free and Open Source software. I cannot discuss much until the proverbial ducks are in the proverbial rows, however, I can tell you that Dr. Winn is planning some very very big things with regards to FOSS releases. Thats all I can say for now… but you can assume that I was there for a very good reason.

sign_handshake_fredtrotter_and_drwinn

Along with meeting the whos-who of e-MDs, I took a tour of the e-MDs facility. This place was huge! They had really cool training rooms and other resources to host clients. All in all, they are obviously a first-class software company. (admittedly proprietary, but then no one is perfect.)

The trip concluded with a visit to the best corporate toy I have ever seen. e-MDs has a working moving replica of Robby the Robot, from Forbidden Planet. The replica moves and is controlled via an MP3-player. They have a sound track of funny sayings about e-MDs recorded in a robotic voice that they have the Robot “say” as it moves around, blinks and chirps.

fred_robby_and_drwinnn

Medsphere so far

Medsphere could have been the “RedHat of Medical IT” that our community desperately needs. Instead they are the “Enron of Medical IT”. For those that are not aware, Medsphere sued their own founders, Scott Shreeve and Steve Shreeve for $50 Million Dollars. As it turns out evidence that at least some of Medsphere’s claims were false can be found in my inbox. After working for weeks with Eric Raymond to see if the community could negotiate a peaceful resolution, I was forced to out Medsphere for betraying the community. I was interviewed regarding Medsphere by Tony at Free Software Magazine.

Since that time, Kizer has announced that he is leaving Medsphere and Frank Pecaitis left for GE . For more Medsphere fun, you can read the entire “Medsphere” category on LinuxMedNews

You will be hearing more about Medsphere as time goes on. But I wanted to have a small blurb about what has happened so far.

Sum it all up

I have been running Postnuke as my blog engine for as long as I can remember. I have received complaints from a fellow blogger that it is difficult to track what I am doing via a single RSS feed. Now I need to blog something that requires a picture. To accomodate the new requirements I am moving to WordPress, which is better focused as a blog engine. Rather than “migrating” my old postnuke posts, I will sum them up here.

  • Please take a look at the Byrons Gallery which I think is really excellent.
  • I would also like to point to a most important post over at my cousins blog which honors my brother. Thanks, Angus, it meant alot to those of us in Texas who have not been able to see the stone yet.
  • I have been interviewed about FreeB and medical billing by LinuxMedNews.
  • I once had a trailer, but I managed to turn it over. Pics of my Home Wreck
  • Byron Trotters Memorial Page, probably more moving than anything is the Guestbook.

Thats it. Thats the relevant content from a blog that I have had for two years. I have been a bad blogger…

-FT