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Archive for March, 2009

Personalized medicine is going through the usual cycle: from an “out-there” idea to a buzz word, to current band wagon everyone must get on. If we must, we must… but as it turns out, there are many wagons introduced as “personalized medicine” that are pulling into the station… Which is the real one?

A major obstacle is that personalized medicine means different things to different people. However, that should not be a deal breaker (yet) because nobody can claim to have the whole or the only correct picture of what it should look like. There are many considerations, including scientific, economic, political, and ethical, which had been intelligently discussed in other places. I only want to bring up one issue that seems basic, yet hopefully we all realize it’s a sine-qua non for realizing personalized medicine. This issue has everything to do with the common denominator of all the various visions of personalized medicine: YOU, the individual patient. The individual patient is emerging from being lost somewhere in the average value derived from the many participants in a humongous clinical study, to being the sole focus of attention in the development of an individualized health strategy. Each patient is about to become special (not only to his mother!).  Wow! Now what?!?

In developing a personalized therapy and a whole personalized health strategy for you as an individual, we are now going to need the complete medical picture of you. A big question becomes how could someone get all medical information that has already been collected about each of us? If you are like me, you have moved a few times and thus you’ve changed your primary and other specialist physicians; you had a few different jobs offering different health insurance plans. If you are like me, you might have seen these health care workers/places only once. You might have had specific medical tests done more than once, but chances are that many results were never looked at comparatively. However, an increasing number of experts are agreeing that we are indeed so different from each other, that the real value of various test emerges by comparing longitudinally the values collected at different time points for the same person/patient. The opportunity to harvest this value from my test has been certainly lost in the many shuffles of my paper medical files. I say this because I unsuccessfully tried to extract my own medical information from previous providers. I then checked on their obligation in terms of time for which the records needed to be kept. Did you know this is not officially specified? There goes all the time I have spent repeatedly filling in similar questionnaires, all the time and money spent on all those repeated tests. Unless one has been really obsessive about it, one’s medical picture (get an idea of what this might contain) is a puzzle with pieces scattered or even buried or lost all over the place. In my case, the only thing I’ve received were postcards simply stating that there was nothing special to note about my tests, no numbers for my own personal records. The inherited fragmentation of the health care system in the US is currently a major barrier to personalized medicine. Various types of medical information currently collected throughout one’s life, along with new genetic information (equated by some with personalized medicine) could be added up to create the overall medical picture of oneself. This IS the basis for any rational strategy to personalize prevention or therapy of one’s medical problems. 

Now we come to the other important part of this question: are we willing to let all this information about us be gathered and put to use? Economical and ethical considerations among others put aside, is the current mind set in the US itself undermining the patients’ willingness to let a complete medical picture be put together and “immortalized” in a personal electronic format?  Many personal topics are off limits even among good friends, a preference that applies of course to personal medical information. Since living here I learned that people place great value on “personal space”. People do not want to feel cramped in any way, spatially or physiologically. In addition, the individual’s uniqueness further fades away by the wide application of a great equalizer. When it comes to first names, one of our most personal and defining feature, many Americans prefer generic names. Foreigners are likely to have to accept one themselves, or maybe some short version of their name. I myself was re-baptized by associates “Dr. Z” (or even just “Z”). I had to accept it at some point (I like my first name!), figuring Dr. Z should be unique enough to represent me. Then one day, I was surprised to learn that my personal physician had voluntarily and officially changed his fist name to the initial Z and shortened his last name to the first few letters, exasperated by complains about needing to remember or pronounce his actual name.  Dr. Z here to see Dr. Z!”… It did not end there, a friend signaled that she had heard of another Dr. Z (this one of a “certain” fame). So, apparently I had managed to become one of the generic Drs. Z…

Does anybody still harbor the hope we could achieve personalized health care without comprehensive personal health records?  A lot of people will need to get comfortable soon with the idea of allowing the collection and use of the information that makes them unique from a medical point of view, or else there can be no personalized medicine.

Please comment here (constructively interfere) and/or join our discussion at BIO2009.

See more: articles on personal health records  from Medline Plus A service of the National Library of Medicine and National Institutes of Health (NIH) and FAQs about your health record

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