Patient Empowerment through Social Media: How Long COVID Sufferers Identified an Urgent New Need

By The SHSMD Team posted 06-29-2021 10:44 AM


“The business of healthcare today involves listening as much as it involves medical science, as only listening lets you be relevant in the audience's mind.” 


Wise words from cancer survivor and thought leader in the medical and patient communities, Dave deBronkart, who was a keynote speaker at the 2021 Advanced Healthcare, Social Media, and Digital Marketing virtual conference, hosted by the Mayo Clinic Social Media Network and the Society for Healthcare Strategy & Market Development (SHSMD). 

e-Patient Dave’s Story 

deBronkart, also known as “e-Patient Dave,” was diagnosed in January 2007 with kidney cancer at a very late stage—where the cancer had already spread. At diagnosis, his expected survival window was only 24 weeks. But, instead of just “accepting” this prediction, Dave want all in on his treatment and eventual remission.  


Part of this process was not just being open to exploring the digital medical universe, but being an active participant within it. Such a patient is now termed a “citizen scientist,” a moniker Dave first saw in Wired Magazine. 


“The citizen scientist is someone without medical training. But, the key thing here is if you are at the edge of medical knowledge and the doctors have no more answers, what other alternatives are possible? These are what I call ‘super patients.’ They're not just engaged patients. They actually extend science,” he explains. “When they can pull together knowledge that extends what already exists in the hospital building, that's a wonderful thing.” 


To be clear, Dave cautions being a citizen scientist is not about “going rogue.” Rather, the modern model is for the patient and clinicians to be partners in extending the range of possible outcomes of the patient’s case. 

Long COVID Patients Unite 


Dave’s focus for his keynote speech encompasses a real-time example of citizen scientists: long COVID patients. Being such an unprecedented disease, doctors and scientists were initially scrambling to uncover everything they could about the virus. However, much of that research was on acute—but severe—manifestations of COVID-19 and how to keep people alive. 


What was unknown at the time was that certain patients, while not in “dire straits,” were experiencing persistent symptoms long past their initial infection. These individuals eventually became diagnosed as long COVID sufferers—much in part to their own collective investigation. In fact, their work has been recognized and published by the National Institutes of Health (NIH). 


“There was this batch of patients who weren't recognized yet, who, after they were released from the hospital didn't actually get better. It was on them to document what was happening. What did they do? They Googled. They found each other and started forming clusters. And, they discovered some of them know how to [look at] data and conduct studies,” notes Dave. “Before the year was out, the NIH had recognized and published what the patients had identified.” 


Why Are Citizen Scientists So Critical to the Advancement of Medicine? 


As co-founder and chair emeritus of the Society for Participatory Medicine and keynote speaker at more than 600 events in 26 countries, Dave is adamant about spreading a critical message. 


“The pathways by which information travels to the point of need are vastly different than they were a generation ago,” he shares. “You've got to learn. You've got to figure out how we interact with the market differently than just putting a megaphone to our mouth and shouting.”  


“When I went to college, the only dependable source for lifesaving medical information was through the medical establishment. There was no feasible chance you'd get that information anywhere else,” Dave continues. “I still get lifesaving medical information from the medical establishment, but it's no longer the only place, the only pathway. This is what has changed. I'd be dead if I hadn't done this.” 


To learn more about the virtual conference, including Dave’s keynote address, visit the conference page HERE. Registration includes full access to the conference, virtual networking events, free one-year SHSMD membership for new members (and early renewal for existing members), and a free one-year Mayo Clinic Social Media Network premium membership.

Learning More 

COVID-19 and Vaccine Uptake 

  • Resources from the American Hospital Association that can provide SHSMD members with additional inspiration and ideas for expanding community outreach, education and vaccination efforts. 
  • VacciNATION:Stories of how hospitals and health systems are vaccinating a nation through creativity, collaboration and compassion.