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Michael Seres, an influential patient who hacked together a 'smart' ostomy bag, dies at 51

Michael Seres, an entrepreneur, patient advocate, husband and father of three, died on Saturday in Orange County, California, of a sepsis infection. He was 51. 

Seres was widely considered to be one of the first and most prominent "e-patients," a term which has become popular to denote patients who are informed and engaged in their health, often sharing their experiences online. He is also one of a small number of patient inventors who helped design and build a medical device -- a digitally enhanced ostomy bag -- that got FDA clearance in 2014. His invention eased the suffering of millions of people with bowel injuries, chronic gut illnesses and cancer. 

Investor Michael Moritz of Sequoia Capital, who made a personal investment in his company, 11Health, praised Seres in a call with CNBC.

"You just don't meet too many people like Michael in life," he said. "I have never met anyone with that combination of buoyancy and bravery."

Seres, who grew up in London, experienced health issues throughout his life. Before his twelfth birthday, he was diagnosed with severe Crohn's disease, an incurable bowel condition. He spent much of his life in and out of the hospital, overcoming more than twenty surgeries, two transplants -- intestinal and bone marrow -- and five bouts of cancer.

In 2011, Seres became the 11th patient in the U.K. to receive a rare intestinal transplant Oxford University Hospitals. Five of the patients who had received the procedure before him never left the hospital, said longtime colleague Dr. Robert Fearn, so Seres knew the odds. But he made a strong recovery, and the experience led him down a path to entrepreneurship. 

After the transplant, Seres was fitted with an ostomy bag -- a small pouch attached to the outside of his body that collected waste from his intestinal tract. In an interview several years later, he referred to it as this "alien thing attached to my body." The experience frustrated him because the bag would spill over without warning. As Seres later learned, no one had innovated on the system much in decades. 

He turned to eBay to purchase some gear and hacked together a sensor that would alert him before the bag leaked. He expanded on that to build tools to measure the output, which he would share with his doctors.

"It struck me at the time that people were building all these solutions in health care...and giving it to you, rather than building it with you," he later said. "If I want to know how to solve the problem, I'll go to another patient." 

As he recovered, he blogged about his experiences and built a loyal following of more than 100,000 readers. He wrote about the importance of making collaborative decisions and having access to his own medical information. Alongside his growing social media presence, he kept in touch for years with his doctors via WhatsApp and Skype, and kept them updated on his progress. 

His own doctors told him they read the blog, and shared it with their medical students. He is widely considered to be one of the first "e-patients" -- the "e" stands for "equipped, enabled, empowered and engaged."

Seres was passionate about technology, but he believed that the doctor-patient relationship was the heart of health care. He recalled fondly how his nurses and doctors timed his blood tests around the few shows he had come to enjoy that were available on the hospital TV network, including "Strictly Come Dancing" and a talk show hosted by UK host Jeremy Kyle. He'd chat with them about his favorite football team, Queens Park Rangers FC, which he followed throughout his life. 

Once he left the hospital, Seres' business idea — the digital upgrade to the ostomy bag — quickly gained traction in the UK, where he successfully raised some seed funding. He called the company 11Health in honor of being the 11th patient who received the intestinal transplant.

Seres suspected that he could build a bigger business by relocating to California. But before making the move to Orange County, a hub of the medical device industry, he emailed one of Silicon Valley's most prominent venture capitalists, Michael Moritz.

Moritz, an investor in PayPal, Yahoo, Google, YouTube and Zappos, said Seres impressed him so much that he asked Sequoia for permission to make a rare personal investment in the company. 

Moritz said it's the hallmark of many of the best founders he's worked with to focus on a problem that they feel personally passionate about solving. "Michael's subject at hand happened to be this ghastly personal adventure with an ostomy bag," Moritz said. "He felt somehow that fate had forced him to embark on this journey."

Medical societies estimate that hundreds of thousands of people currently have an ostomy bag in the U.S., meaning there's a significant market opportunity. Moritz notes that in medicine, even "reasonably rare problems" can become big businesses.

In 2012, Seres met Dr. Larry Chu, a practicing anesthesiologist at Stanford, who became a close friend. Dr. Chu recruited him to join Stanford's medical-tech conference, Medicine X, as the first e-patient-in-residence. He frequently talked with the clinicians at Stanford to remind them that patients can play a role in helping design clinical trials, build companies, and that they should be active participants in their own care.

Two years later, 11Health's connected ostomy bag received an FDA clearance, marking one of the first times that the agency has worked closely with a patient-inventor to bring a new technology to market.

A 1999 portrait of Michael Seres, Licensing Manager of Copyright Promotions Group, at Football Expo 1999 in Cannes, France.

Nick Dawson, a Bay Area-based designer, met Seres through the Stanford network. Dawson said that Seres became one of the most influential voices in an important and growing movement.

"Patients were literally knocking on doors and demanding to be a part of the conversation," he wrote in a letter to Seres' family that he shared with CNBC. "It was part of a necessary upheaval."

A colleague at 11Health, Paul Gordon, said Seres an effective speaker at medical conferences because would regularly crack jokes, using with his typically British self-deprecating humor. Because he was color blind, he sometimes showed up at events in mismatched attire, which Gordon said added to his charm.

Gordon referred to Seres, who was slight in stature, as the "smallest giant I've ever met in my life." 

When the coronavirus was declared a pandemic this spring, Seres knew that his friend Chu would be swamped. Seres' health had taken a turn for the worse, but he still sent texts featuring his personal bitmoji to say hello or to give him a virtual hug.

"Every friend teaches you something," said Dr Chu. "Michael taught me to treasure people and let them know you care every day."

Seres is survived by his wife Justine Seres and his three children Aaron, Nathan and Lauren.