With the world fighting a deadly pandemic and adjusting to ’a new normal’, we have witnessed patient engagement reaching levels far beyond traditional healthcare settings. Michael Seres’ legacy of why partnerships with patients should be everyone’s priority is now more important than ever.

In commemoration of Michael Seres’ inspirational legacy, we look back at the rousing keynotes, anecdotes, and advice that Michael was always more than willing to share. We also celebrate his insatiable appetite to connect, innovate, and improve the lives of many, especially those who had to live with a chronic condition.     

Michael, born in the UK and diagnosed when he was twelve years old with Crohn’s disease, an incurable bowel condition, embodied all the qualities of a Changemaker – he was tireless in his pursuit to move mountains in healthcare. 

He was a visionary. In his world, every health system revolved around the patient, the patient’s needs, and the patient relationship with those who provided the treatment – be that the specialist, the family doctor, or the nurse. Michael was also an ardent believer in the power of data and advocated its use for the benefit of patients and their families.  

He was brave. Michael was the paragon of bravery and inspired those he met. For significant healthcare change to occur, it needs both parties – the service provider and the service user – to be ready for bold actions, even if this requires going beyond the established conventions in the medical world. Michael spoke effusively of his doctors and their bravery to work together with him, to put the patient lenses on, and look for a solution together.

He was an innovator. Michael did not sit around and wait for an invention to help manage his condition. As the eleventh patient with a small bowel transplantation in the UK, he had to be in a constant mode of innovation, not only for coping with his personal condition, but also for improving the quality of life of all other patients with his condition around the world.

He was an entrepreneur. Michael was determined to look for investors in his innovation, even if that involved travelling thousands of miles and eventually moving to the US. He was strident in his belief that a digitally enhanced ostomy bag would ease the lives of millions of people with bowel injuries, chronic gut illnesses, and cancer. His journey led him to establishing 11 Health – a thriving startup that would soon achieve FDA clearance for its innovation and inspire other patients to follow his lead and dive into the entrepreneurial world.

He was a leader. Michael knew that change wouldn’t happen without empowerment. Irrespective of the challenges presented by his condition, Michael made use of every opportunity to elevate the voice of the patient. He took advantage of every HIMSS conference, community meeting, and even the HIMSS boardroom to encourage captivated listeners to understand illnesses better and emphasise the need for innovation in the field. Furthermore, he also placed emphasis on the need to take leadership and ownership in the research and discovery of novel solutions that would result in better patient outcomes for all. In his own words, “I would never be a surgeon, but this does not mean I don’t have a role to play” – a sentiment which resonated with many people.

For HIMSS, Michael was our friend. Our colleagues are remembering the passionate leader of the HIMSS Future50 Class of 2019, the HIMSS UK Advisory Board Member, the patient with the superpower of advocacy, and a true visionary in transforming healthcare through information and technology.  

Anne Cooper, non-executive director at Yorkshire Ambulance Service NHS trust, commented: "Michael Seres was a very special man. He believed that patients had something more to contribute to the system than as passive recipients of care. He believed that peer support is a magic offering between people who have similar health challenges. 

"But more than that he practised what he preached and went on to use his considerable skills to try to make things better for people like him, who had an enduring and complex long-term condition. He was an innovator and a champion of the patient community.  If we believe in what he told us, we all need to step up to the plate and follow where he was leading us. I will do my best to respect his legacy."

Bruce Steinberg, managing director and EVP, HIMSS international, said: "Michael was an inspirational leader, innovator and strong patient voice who was tireless in his mission to improve patients’ lives. He never hesitated to support key patient and innovation initiatives despite his own travails and did so with thoughtfulness and a smile. 

"We will ensure that the beacons of motivation he lit with his grit and determination will be continued through the generations, where every patient, everywhere will be helping to reform health through the power of information and technology." 

Marie Ennis O'Connor, Future50 Patient Leader, Class of 2019, said: “Words cannot do justice to the enormous influence Michael had on the digital patient world. He was a trailblazer in the world of patient experience, challenging leaders to see the true value that patients bring to healthcare as persons with lived experience. He encouraged patients to step out of the shadows to claim their place proudly and confidently as partners in healthcare."

Pascal Lardier, VP, HIMSS International, concluded: “The number of in-memoriam messages published since Michael’s passing is a testament in itself to the many lives he touched with his kindness and engagement as a patient. He was an advocate when “patient empowerment” was still a very new expression. He was an expert voice on data access, proved that users could also be innovation drivers, and inspired so many other patients around the world to become active agents of change.” 

Michael Seres was a member of the HIMSS Advisory Board UK between 2018 – 2020 and a Patient Leader on the HIMSS Future50 Class of 2019. He was a frequent keynote speaker at HIMSS Conferences in Europe and the US, and was one of the leading Health 2.0 advocates for grassroots innovation. HIMSS and Health 2.0 will continue the legacy of Michael Seres through a global patient initiative to promote innovation by patients and support patient entrepreneurs around the world. More information will be coming soon on himss.org.