by Craig Klugman, Ph.D.
According to the British Library, “Cabinets of curiosities, also known as ‘wonder rooms’, were small collections of extraordinary objects which, like today’s museums, attempted to categorise and tell stories about the wonders and oddities of the natural world.” Two television shows open the cabinet to give the world a glimpse of medical oddities—the unusual cases that are hard to diagnose. Diagnosis landed on Netflix and extends Dr. Lisa Sanders longstanding New York Times “Diagnosis” column (she was also technical consultant for the television show House MD). The second show is on TNT/TBS, Chasing the Cure, and features longtime anchor Ann Curry. On both productions, a person’s mysterious case is presented and social media is used to crowdsource differential diagnoses. The idea is that if a patient and their doctor do not know, perhaps more people need to be consulted to find a diagnosis.
These are stories of desperation, of people who do not have diagnoses and have chronic illnesses that have overtaken their lives, of people who lack health insurance and struggle financially. These are also stories that buy into the current zeitgeist that eschews the very idea of expertise. In this case, we are told that amateur medical detectives (MDs) and Dr. Google are just as effective as your local physician. In a Wired interview, Jared Heyman, the founder of a medical crowdsource website, said “no single individual, even a doctor, can keep track of thousands of unique medical disorders, with hundreds of new ones discovered each year“.
On Diagnosis, the segments were pre-recorded and the entire season was released at once. Thus, when available, the episodes and the stories are complete. Dr. Sanders talks with the patients via Skype about the crowdsourced suggestions (which are posted as videos), but the patient is left to decide which suggestions are worth following up on. Most episodes present a single case. The episodes are slow and presented like a true crime procedural.
On Chasing the Cure, several cases are presented on each episode. Some segments are pre-recorded but much of the show is broadcast live in weekly episodes. At the bottom of the screen is a telephone number and website address along with a scroll of viewer posts on social media. Viewers can visit the website, view cases, and offer suggestions that are then reviewed by a panel of physicians. Because parts of the broadcast are live, some patients do not walk away with an answer. Others are seen by an expert and receive tests and a diagnosis (usually revealed to the patient for the first time on-air). Curry talks to the patients and the doctors’ panel reviews the crowdsourced suggestions. This show is presented like a telethon where the patients are the entertainers and the doctors are taking the pledge calls.
ONLINE MEDICAL CROWDSOURCING
While this may be a novel approach to many of us, the crowdsourced method to diagnosing disease is not new. Besides Sanders’ New York Times column, medical crowdsourcing is used for diagnosis and disease surveillance. For example, Sermo (founded 2005) is a social media platform for licensed doctors to help each other diagnose their patients. Another website is CrowdMed where the general public can post cases and medical detectives suggest possible diagnoses. On that website, patients pay a monthly fee ($150-$750) and the detectives who identify what turns out to be the correct diagnosis share in cash prizes. The money may incentivize people to participate but the cost means that being helped depends on your ability to pay. Detectives may be more motivated to work on cases that have a higher monetary award.
MEDICAL ETHICS CONCERNS
Chasing the Cure has an “ethics team” comprised of a medical ethicist, social worker, psychologist, producer, and legal representative. I reached out to the show and asked to speak with their medical ethicist to learn more about their process and the issues they identify. I also thought that readers here might be interested in what it is like to be a television ethics consultant. After making it clear to the press officer that I had time available and this was not a rush request, I received this note: “Unfortunately I don’t have our medical ethicist available at this time.”
Nancy Berlinger of The Hastings Center said in the LA Times that she is concerned with issues of privacy, with wrong suggestions delaying diagnosis and treatment, and that information might be withheld from a patient to meet production schedules. For example, in one case on each show, a patient receives the results of their DNA testing. Since Diagnosis is pre-recorded, the subject presumably consented to having her information shared and might have been able to object if that information put her in a bad light. But on Chasing the Cure, since the show is live, consenting to having the information revealed means there is no taking it back.
On both shows, the patients have signed releases and consent forms. We cannot necessarily protect people from themselves, but I do have to wonder if these people, desperate for answers, understand what publicly revealing such information may mean for their future health insurability (if pre-existing conditions regulations are struck down), qualifying for life insurance (not protected under law), employability, or even for their future children’s’ lives.
Chasing the Cure makes it clear that people should not be using the show to diagnose and treat their own disease by showing messages after commercials that the show is “not intended as medical advice for the viewing audience. Do not use this information to diagnose a health problem without first consulting a qualified health care provider. No physician-patient relationship is created by watching this program.” Clearly the production staff and ethics team were concerned that people might self-diagnose and treat based off the show’s content. They want to be sure that patients have no expectation that they are seeing Dr. ChasingTheCure.
HIGHLIGHTING HEALTH SYSTEM DISPARITIES
Some episodes end up highlighting the divide in medicine across countries. When a young woman from Las Vegas has her disease diagnosed by a team in Italy, she questions whether she can afford the tests they recommend. We learn quickly that she is in financial straits for her frequent hospitalizations and doctor’s visits. The team in Italy explains that the costs for rare disease testing are covered by taxes in their country. The patient is shocked that medical care might not put someone into near bankruptcy. In most cases on both shows, the viewer sees the financial burden of illness including debt, fighting insurance companies for coverage, job loss, and attempts to qualify for disability and veterans benefits.
People come to the show when their local doctors “have failed” them. Thus, these physicians come across as lacking competence and patience: Challenges in diagnosis and dismissing patients who they cannot help (or who require more time, unusual thinking, or lack financial resources). The heroes end up being the medical detectives (many of whom have medical backgrounds) from more prestigious medical centers and research institutes. The shows buy into the idea that good medicine is not available to everyone, and thus the average doc is no more than an expert than Dr. Google.
BUT DOES IT WORK?
One of the problems with this approach is that while it may help a few people, the concept is not necessarily scalable to helping a larger population. The concept remains a product and has not yet been adopted by a medical system as the normal way of doing business. One modest study (13 subjects) suggests that patients who use CrowdMed use fewer medical resources after receiving their diagnosis.
Given that these shows arise to help patients who lack access to medical resources and who face financial hardship because of their disease, are these productions a uniquely American phenomena? Are we poverty tourists glancing into the curiosity cabinet of people our system has failed? The U.S. is the only high-income country without a universal-type health care system. With our profit-driven health care, patients get only the care that they or their insurance (if they have it) are able to pay for. If you lack the means to pay for diagnostic tests and doctor visits, then you do not get them. While there are some rare diseases (unicorns) where only a handful of physicians may have ever seen the disease in real life, many of the stories on Diagnosis and Chasing the Cure are about zebras (rare but not unheard of), not unicorns. Actually, these are tales where people could not get diagnosed because they could not afford the tests and price of advanced care.
These shows make a spectacle of health problems brought about by economic inequality for the purpose of making money for the producers and staff. Even if participating patients walk away with a diagnosis, the patients are still in debt and still suffering at the hands of a system that views medicine as a commodity. The shows are one more predator preying upon these people in pain.