Is This Really Research 2.0?

I will assume many of you are familiar with the spit parties of 2008.  23andMe basically provides reports from DNA analysis of your spit.  That's all fine and dandy, I suppose.  I'm not sure about the validity or reliability or accuracy of the reports, so at this point in time, there may be issues in customers believing the reports to be 100% accurate.  23andMe has moved into being more than just an "informational" kind of company to a company that stores the genetic information for internal research AND to share with other companies.  I couldn't find any information anywhere as to the "other companies," so I have no clue the focus of the "research 2.0" occurring.  If the profiles are being used to assist in recruiting subjects, then a potentially helpful relationship for this endeavor has been created.  If individual profiles begin to have data dumped into third party payer systems to determine premium rates for subscribers, this would be problematic.

Another company, PatientsLikeMe maintains a database currently consisting of 40,996 individuals who have subscribed to the free service.  In June, UCB (a Belgian pharmaceutical company) partnered with PatientsLikeMe.  UCB will obviously have access to the database.  The supposed goal was for UCB to enhance the ability to learn how drugs affect patients.  Now, I don't know about anyone else, but I could easily envision instead targeted information being provided to the individuals in the database - kind of like how Amazon knows the kind of books I read and sends me frequent emails on what it thinks I will like.

Since nonmembers could look through PatientsLikeMe, being the curious person that I am, I did a quick assessment.  Not all patients reported within all the categories.  This leads me to wonder... did a particular treatment not happen OR did the person just skip filling in information?  I also don't know how the information was provided as to whether there could be reduncancy in information.

What if... What if various medical professionals used the information (instead of private companies)?  For example... take fibromyalgia.  When I did this search there were 5,467 patients with this condition with recent updates.  Of those patients, you can see for "physical therapy" there are a lot of problems... maybe the patients didn't know what physical therapy was??  (How did chiropractic fall under physical therapy?)  Putting that aside, the main intervention reported by patients was "massage therapy."  Only 2 reported physical therapy for endurance, resistance and strength, 5 reported dumbells, 2 reported theraband and 1 reported kettleball (under the physical therapy treatment category).  Hmmm... from my opinion, our profession has issues in how patients are being treated because massage therapy is not evidence based for this particular type of patient.  Okay, I know maybe patients get confused, so I looked further and browsed the treatments and saw there was a category for exercise.  Exercises reported were mainly stretching and walking and stretching. 

Reality is the biggest glaring issue I saw was that we have research supporting the role of physical therapists for this condition.  For 5,367 patients, a huge, huge majority are not receiving adequate care!  Every single one of them should have reported some form of exercise.  

I wonder... if Pfizer entered into a partnership with PatientsLikeMe focusing on patients with fibromyalgia... I wonder if after 12 months of partnership if there would be a substantial increase in patients reporting Lyrica as a prescription drug?

Can we use "Research 2.0" to improve the care for patients?  Could we set specific goals to see an increase in utilization of physical therapists for appropriate patients?

~Selena

photo by keepthebyte via Flickr