(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.