CONNECTED HEALTH CONFERENCE • SAVE THE DATE • October 16-18, 2019 • Boston, MA
By John Sharp, Director, Thought Advisory, HIMSS
Dr. Lisa Sanders, MD, FACP from Yale New Haven Hospital is known for diagnosing rare conditions and sharing her experiences in New York Times Magazine. As of late, she has taken some of these patient stories to new levels in a Netflix series titled "Diagnosis." Dr. Sanders has said that in order to find the diagnosis, she has depended on other doctors in the room, but with the help of the New York Times social media team and the Internet, she expanded that group of doctors to worldwide communities. Now, this is not crowdsourcing like a GoFundMe campaign for medical costs, this is powerful crowdsourcing of medical knowledge from around the world. Throughout this series, many forms of digital health technology are highlighted. Below I've outlined just a few.
Electronic Medical Records
"Diagnosis" is the story of technology-enabled care for rare conditions and central to the investigation is the availability of electronic medical records (EMRs). At least one doctor in the series is seen typing, but her back is to the patient and family which forces her to constantly turn back and forth to talk. Although EMRs are not mentioned specifically, the capability of sharing data, with the patient’s permission, is there. When it comes to Dr. Sanders's goal of diagnosing rare conditions, especially with a complex set of symptoms and test results, the consolidation of data into an EMR system is essential. Access to medical records by patients was also key but some only had records on paper.
Real-time Video Calls
A recurring technology shown throughout the series is video calling services. Dr. Sanders talks to each patient along the steps of their journey and crowdsourced responses from around the world are collected either through recorded videos or direct video calls. Throughout the show, Dr. Sanders remarkably even does video consults with specialists; one consult is even with a group of doctors from Italy doing whole-genome sequencing.
As Susannah Fox has researched for years, peer-to-peer support is key to managing one’s condition, whether it's common or rare. In one episode, Gulf War Syndrome is identified as a possible diagnosis. Through a Facebook group, the patient connects with others who have similar symptoms and one veteran even comes to meet with him at home.
“There is the medicine that comes through books and then there is the medicine you experience.” - Dr. Sanders.
At one point Dr. Sanders says, "Because the amount we know is so much greater now than it has ever been in the past, and growing exponentially every day, there's not a single brain that can hold all this. When people talk about AI in medicine, what they're really asking for is a brain we can all access. The crowd really functions as that artificial intelligence. Just like AI, not all possibilities are reasonable in each case. Instead, they give us a broad palette to expand our thinking."
A TV critic's review on NPR talked about "Diagnosis" like a true crime novel – looking for clues to solve each case. Yet it is significant to examine the enabling technologies which make a “crowdsourced” diagnosis possible. It involves not just having the latest journals and textbooks at your fingertips, but also an international network of those with experience in the symptoms of rare conditions, both providers and patients themselves. And how much relief an answer can bring? One of the patients said, "The collaboration of all the people who have come forward, and the fact that we're not all alone in this anymore, it adds a little bit more color where there was once a whole lot of gray."