Derived from, and created in conjunction with the popular New York Times column Diagnosis, Netflix recently released a docuseries that chronicles the diagnostic journeys of patients with unusual medical ailments. This column is written by Dr. Lisa Sanders, a renowned physician and associate professor of internal medicine and education at Yale. She was also a consultant for the popular show House, so this was not her first stint in entertainment. That may explain why this show took such a radical approach by using social media and the “collective mind of the Internet” to solve these medical mysteries.
Being a social media professional, I was intrigued by the concept. I know that we joke all the time that “everyone is a doctor” now that we have the world’s collective knowledge at our fingertips, plus the ability to get opinions from all over the world all at once makes any effort available to collaboration, but…can social media outreach cure people? It is important to keep in mind that these people within the series are not just any people. Like I said before, their ailments are unusual, but they have typically also seen a number of doctors and specialists in an attempt to reach a clear diagnosis and course of treatment to no avail.
From watching the docuseries, it is surmised that this experiment was successful. Why did it work, and what does it mean for the future of medicine?
The Science Behind Social
Social media is an extension of our world, but it’s also a caricature of it. Think about it; your friends post their best selfies, their vacation pictures, and you only want to exude your best self. This is a brand, and this brand represents an image of yourself that you may fail to produce in your everyday life. So, for example, while you may produce confident essays online, you may actually be a poor public speaker. However, as I said, it is also an extension in the way that you can see what is going on in the world around you. From your friends’ everyday happenings to events in your area, the benefits of citizen journalism are available to anyone active on social media.
The availability of billions of people around the world with the Internet to contribute to a given platform also takes advantage of crowdsourcing possibilities, a popular fundraising tactic that has both exploded and come under fire in recent years. What’s interesting is that the crowd is not giving out money for a doctor or treatment, they are contributing their minds and ideas like a forum, but it is all a pointed attempt to reach a specific external goal.
Ties to Social
In the Diagnosis scenario, people are both willing to put themselves out there and respond due to this disparity in the everyday world. Not only does social eliminate the geographical disparities, but it also topples the social barriers that could prevent communication otherwise. For reference, one case was solved by a medical team in Turin, Italy where the patient, Angel Parker, was subsequently delivered a diagnosis of carnitine palmitoyltransferase deficiency II (CPT2). The treatment? A simple change in diet, according to the doctors. It is reasonable to assume that, without social media, it would have been statistically impossible for Angel Parker or her family to have heard of this particular medical team across the sea, thus she would have continued to suffer without it.
Even without this experiment, it seems that there needs to be more public spaces open for medical communication. This opens up an entire ethical dilemma localized around the fact that the people reaching out are not always trained doctors. There is also the fact that these people are basically playing ‘House’ and diagnosing the patients based solely on the limited information available to them. They cannot run tests, confirm anything, or even ask the patient questions. It is like WebMD, except the data comes directly from individual knowledge and experience instead of a static database.
Another boundary-breaking case was that of Kamiyah, a young child with an unprecedented genetic disorder. After her case was accidentally abandoned by the National Institute of Health who had only sprung to action once they were contacted by Dr. Sanders, Kamiyah’s mother Breteni was able to leverage the power of social media, not only for a diagnosis but for a community. After being told that her daughter was the only child diagnosed with her specific illness so far, Breteni felt incredibly alone, but she found groups online full of children with similar mutations and even began communicating with one family in particular whose child had sporadic episodes of losing consciousness like Kamiyah. Like Angel Parker, this family’s experience takes them abroad for their personal solution, even though their solutions were different in the end.
On the flip side, we also saw that some of these factors that played to the success of the show also proved to be destructive. In Lashay’s episode, we saw that the online community disregarded her symptoms in the way that she and her mother had described previous doctors doing. Many people pointed to eating disorders and psychological possibilities, and this is a result of the cognitive dissonance people are experiencing when they see this beautiful, otherwise healthy-looking teenager claiming that her illness presents in a bulimic fashion. Of course, since she was not outwardly suffering or appearing as an ill person, she was not treated as one, and people felt freer to express this since their online identities would not clash with her real-life one.
It is like when someone sees a person park in a handicap-accessible parking spot. One of the first things most people do is examine the car to check for the blue decal. If the decal is there, the expect to see someone in need of some sort of mechanical assistance; however, it is also true that handicap ability is presented in different ways, so someone with that decal could walk out of that vehicle appearing fine. The person viewing the situation would automatically perceive that person, who does not represent their image of a disabled person, negatively.
Promises and Consequences
However, this type of connectivity will change the way medicine works forever. Clearly, people with fewer resources (such as close-by quality healthcare and money) and difficult journeys will benefit from the revolution that is online diagnostics. However, there are potential harms to this practice as well, such as the inclination of people to over-diagnose. For example, WebMD may say you have a chance of having either stomach cancer or an ulcer; there are people predisposed to believe in and act on the worst. Furthermore, it can give people irresponsible diagnoses and can put people through expensive and unnecessary testing, expended resources, or even death. Not everyone has Dr. Lisa Sanders over their shoulder to double-check their work.
The Bottom Line
Without the interconnectedness that we experience today, there is no practical way that this experiment could have worked. Thinking about the possibility of this type of correspondence and networking working via snail mail is laughable at best, but that is because the idea is so impressive and exciting. I spent the whole time that I watched the series in amazement, and I feel like other media professionals will as well. The questions posed during the show of morality and responsibility are enough to occupy your mind whenever things get a little slow plot-wise. You will not get lost in the medical jargon and will genuinely enjoy seeing a whole new way to practice expose itself. Hopefully, shows like this will increase the speed in which we see more regulation on social media practices in both government and medicine.