Is There a Doctor in the House?

The medical profession has long been home to some of the most trusted members of society.  Some may believe that the trust and respect for doctors derives from the Hippocratic oath which they make when upon entering the profession.  That oath states that they will “do no harm” and will “keep secret” certain patient’s information.  This oath, while noble, does not fully explain the dominance of the physician in the healthcare industry.  What does explain this dominance is the doctor’s access and possession of information and data.  As Jody Ranck told us in class, “data is care.”  Doctors have never been necessarily more noble than the public, nor inherently wiser than the public.  However, they have maintained a monopoly on medical information for centuries.  Yet, their grasp on this monopoly is slipping away from them.  Actually, it is not slipping, but rather, running away as every day, new m-health technologies are developed which bring the possibility of a more democratized distribution of medical knowledge.

Are doctors anything other than
monopolizers of health information?

            One primary example of this new wave of medical knowledge is PatientsLikeMe.com.  Developed initially for sufferers of ALS, PatientsLikeMe now has no restrictions on diseases/conditions of its members.  Site members input their own symptoms, diseases, and treatments (both successes and failures) so that other members facing the same conditions can better understand what treatments may or may not work.  The more members that join the site, the more data the site can build.  And of course, the data, is what makes the site so powerful.

            This New York Times Article explains that todd Smalls, a patient suffering from M.S. found PatientsLikeMe to be something better than the average health blog that he might usually see.  The site does not only seek patient’s anecdotes or provide the opinion of one publication (like WebMD might), instead the site quantifies the information of symptoms and treatments that members supply in order to deliver graphs and analysis back to the members that need information.  Todd Smalls was able to decide for himself that he needed a higher dosage of his medication, based on the experiences of other similar patients.  He then went to his neurologist who agreed to prescribe the higher dosage, and the severity of his symptoms were decreased.

            While this system shows much promise (and according to Wikipedia over 100,000 members have joined the site as of 2011), some of the information may still seem a bit odd.  That is because, the data all boils down to the self-reports of people who, unlike doctors, may not have the training to discern what is the most pertinent information to include on their profile.  For example, I was perusing the site and typed in fatigue as my symptom.  One of the treatments was “naps.”  I then clicked on naps and found that 3 of the nappers listed the side-effect of “waking up feeling just as tired as before” as a “severe” side effect of napping.  Of course, as the data grows, these outliers should generally fade away, making the data more reliable.  But for the time being, a site member may have to be wary of the effectiveness of such controversial treatments as naptime.

Look out!  You might still be tired when you wake up!

            HIPAA regulations also present an interesting status for the site.  That is, the site, since it is not a health-care provider, is not subject to the same privacy regulations as doctors and pharmacists (among others).  Therefore, the site allows patients to divulge personal information about themselves, while also including their locations and pictures of themselves (if they wish to give out this information).  This information can then be accessed by essentially anyone.  There may be some inherent danger with giving out this much access to information, but the data is completely voluntary.  Nobody has to join the site or divulge information.  Additionally, this extra information can be beneficial to those in the medical field.  Doctors, researchers, and drug companies, who are often slowed in their understanding of medicine due to HIPAA regulations, can access the site to gain a better understanding of medicine.  So, the site may not really replace doctors, but instead, make them better and ensure that those of us who still use doctors (anyone who needs a prescription) will have access to doctors whose monopoly of health data is at least a more accurate monopoly.

            Also, PatientsLikeMe is a private corporation.   This means that they make money of selling their data to researchers and drug companies for their use in developing new treatments.  Again, this seems to clash greatly with the ideals of the Hippocratic oath of keeping secrets.  Yet, once again, this is an opt-in service.  If members are aware that their information is being sent to private companies for monetary gain, then should we accept that?  Or, should these patients be compensated for the data that they are contributing that is leading to someone else’s financial gain?

Don't worry, it's an opt-in service!

           Before, doctors held a monopoly on information, and thus they were the ones who made money in health care.  If democratized information is leading to the development of healthcare, I believe that these people should similarly be making money.  However, this too leads to a series of perverse incentives (or a moral hazard), where people could essentially attempt many medical treatments to earn a profit.  In the best case scenario, PatientsLikeMe can be saving lives.  As founder Jamie Heywood says "People who use [PatientsLikeMe] will live longer; people who don’t won’t."  Some medical professionals are more cautious.  One doctor says in the same NY Times article as before, “Sometimes patients misunderstand what a doctor says to them,” he says, “so by the time it gets to the third or fourth party it’s like a game of telephone. It’s not as reliable as coming from the horse’s mouth.”  For now, doctors may still be the best option for reliable treatment and ensuring of patient's privacy and safety.  They still take their oath and maintain a level of respect.  Perhaps m-health options will never be able to replace doctors in this sense, but in the very least, they will provide more options for patients and doctors seeking medical information.