I Dream of Applying the Growing Web Analytics to Medicine Someday
(Originally published on Aug 17, 2010 by Kristin Bennett on Associated Content/Yahoo)
After reading through the current issue of WIRED I have been fantasizing about what could be if we were able to collect and analyze data the way that Flickr, Google, and now Hunch has, for use in researching medicine.
Where is this coming from?
Some context from which I am writing this article is I am 29 years old, a mother of two, diagnosed with multiple sclerosis, and have experience working on the development of SaaS (Software as a Service) Application Development.
If I were writing this article a few months ago I would be explaining to you that multiple sclerosis (MS) is one of the many autoimmune conditions affecting one in five people. Recently though there has been a wealth of controversy about what is really happening since Zamboni has joined the scene. Also there has been some discoveries about how there can now be tests taken to indicate what kind of treatment a person will or will not respond to. That last sentence is humorous to me in it’s use of whether a patient will or will not “respond”, it is funny because what these medicines are aiming for is to not induce any kind of response, if anything they abort any attack that may be occurring internally based on the definition of MS a few months ago.
Because of these recent developments I think there are a lot of websites that at this point seriously need to be updated.
I mentioned it has been nine years since I was diagnosed with MS, my medical journey really startedtwo years before that point when I was 18 years old in my first semester at Parsons School of Design(now called Parsons The New School of Design) being told I had a stroke. At that point my situation was a quandry, I was a gym rat, walked miles each day when trekking from my apartment in Brooklyn to school each day and ate a healthy diet with much more Kashi and less pizza than a typical college diet.
It was at this point, when I was 18 that I learned an important lesson, which is that doctors are human and they absolutely do not have all the answers, even the ones like House that think they do (of course maybe he has access to the kind of database I’m dreaming of and has all the random correlations programmed into his brain).
What This Fantasy Consists Of
My fantasy is that everyone has the results of quizzes, medical treatments, skincare products they use, foods they eat, things they are allergic to and much more all collected from different sources most likely and ideally some kind of journal of symptoms they have ever experienced that is all cross referenced, compared, and potentially giving some sort of preliminary diagnosis for the person to bring to their specialty focused doctor who can provide treatment. Likewise people would be able to see what kinds of treatment others in similar situations pursued and how happy or successful this treatment was for them.
All Methods Of Treatment
As I touched on, this database would include information from all different kinds of medicine, from ancient herbal chinese medicine, chiropractic, naturopathic, homeopathic, and of course all kinds of western medicine. There would be no limit at all to the kinds of treatments being compared when all this data comes together.
All Sources of Cause
One of the most frustrating moments that I had when I was learning about treating MS and why there were such amazing discoveries made regarding diet (Swank) so many years ago yet the experts I had interacted with, mostly neurologists, refused to even admit that diet could possibly be affecting the course of my MS! Eventually I learned, eight years post diagnosis, that the reason they couldn’t acknowledge these things was because of the scientific method they were using to guide them which required the use of “double blind placebo study” which is impossible with food!
Learning this also led to my thinking about everything else we expose ourselves to, recently the FDA being sued for not regulating antibacterial products that are hurting people, parabens in almost every drugstore product being recognized as estrogen in our body…who knows what that will or has led to but hasn’t been proven because it is dependent on the full history of product usage in a persons life and quantity of parabens and other ingredients within the products they use. I have to wonder honestly how many of the germophobe doctors who have the antibacterial lotions in their office are actually passing these things into the blood stream of their staff and patients via the skin on their hands.
How many little boys need to be born with genital birth defects before we start researching what the ingredients in our products do to our bodies? How many stylists babies were born with these defects before they discovered it was the hairspray?
Currently there is some research that is focused on things like ingredients in the products we use, the scary part is that it is being done in studies focused first on disease and then on product, for example one disease that has gotten a lot of attention is breast cancer, and we can see the effects parabens have relating to that problem, but if I want to know how it relates to MS, there is no data!
If we could pool the data that all the cancer, heart, brain, and skin disease research projects what would we learn? I can give you one example…I just googled “environmental causes of heart disease” to find some relevant links to what I’m writing here and I found a link that mentions the higher risk of stroke in areas of high pollution. This makes me wonder if moving from the west coast to a polluted NYC was a factor in my stroke? What else would I learn if I could just find the right terms to search for?
Beyond Physical Products and Food
In the same issue of WIRED I read about a man named Robert Sapolsky who is has studied stress and effects of it, particularly related to hierarchy. I also have heard a man named Gabor Mate speaking of how addiction and child abuse are related. What if we could also take this kind of psychological and personal history information taken from places like facebook and other sites that ask these kinds of questions and study the effects of things like being adopted, sent to brat camp, being abused or even just coming from a military family had in areas outside of those currently being studied?
More Examples of How This Could Help
When I had a breech baby, or a muscle spasm, I didn’t know who to call, and after pursuing many different experts for help I discovered alternative medicine. If the resource in my dreams existed I could type ‘breech baby’ into a google like search box and have access to actual numbers that had true meaning related to collected data about ways that other people dealt with this and how well it worked for them. When I called my primary care doctor, all they told me was to take a tylenol and wait, but in the case of the muscle spasm, I simply didn’t have the time as was due to have a baby!
I can’t imagine the breakthroughs that would emerge if we could merge databases of things like personal care ingredients, marketing information from popular magazines advertising for such products taking in who uses what, other online quizzes from medical websites where people go to research their symptoms all being cross checked with the latest medical research and findings?
I hope that you found this article interesting and that you are one of the lucky 4 in 5 people who hasn’t been diagnosed with one of the mysterious autoimmune conditions affecting so many of us. I hope that your family isn’t affected either, but if you or your friends, family, co-workers are affected, I am sure that you can see the potential in this idea. More than anything I hope that someone who is in it to help the world uses what I have written here and makes something of it, of course I’d love to do it myself or be involved as well but more than anything I hope someone makes it happen as soon as possible so that less people suffer from these mysterious ailments and can find the appropriate treatment or even better avoid anything that will likely cause a condition before it happens.
I have not mentioned things like the logging of supplements, food, cosmetics and much more but I see all of this as being included as well.
This was recently rescued from the WayBackMachine and I plan to go back asap to collect all the links in the original article as well. Please comment if this topic is of interest to you and also donate to the Way Back Machine because they deserve it!!