Patient power is far from reality in an NHS that has no chief patient officer, where lived experience is not embraced, and where patient entrepreneurs lack opportunity, says Michael Seres. The veteran patient advocate talks to Matthew D’Arcy.
Michael Seres has lived patient engagement more than most. Diagnosed with incurable Crohn’s disease at 12 years old, he became the 11th person in the UK to undergo a small bowel transplant at The Churchill Hospital in Oxford, after more than 20 operations and suffering intestinal failure.
Through the ensuing decades, which have included being a two-time cancer patient, he has taken an active role in managing his health. He became one of the first patients to engage doctors through Skype and Twitter, and eventually built technology to improve his life and the lives of patients with similar conditions.
Yet, despite his own positive examples of engagement, and the opportunities he has had to spread the message – which have included addressing President Obama’s White House – Seres thinks the value the NHS puts on patient experience is still very much wanting.
“Why is there no chief patient officer in the NHS? Why at every single trust, or at NHS England’s board is there no such position? We have medical directors, clinical leads, clinical innovation hubs, an NHS innovation tariff helping clinical entrepreneurs,” he says. “We have absolutely nothing around the patient, where their contribution is judged and valued on a par with everybody else.”
Disconnect to Jeremy Hunt’s decade of patient power
Health secretary Jeremy Hunt has said the UK will witness a decade of “patient power” over the next 10 years. New online services and better control of information will play a big part. Yet realising patient power means more than providing patient apps to control preferences, or even appointing patients to “another lay committee”, Seres believes.
“I have a huge admiration for the desire to achieve patient power, but there is a massive disconnect between aspirational goal and reality,” he says. “The NHS saved my life. I get treated amazingly by the NHS. It is a phenomenal institution. But it is so focussed on healthcare professionals.
“Despite the odd exemplar, it doesn’t listen, co-design, collaborate or fully engage with its end users with a culture of mutual empathy, respect and trust. In no other sector would the end user be outside the decision-making process. But in healthcare the patient is excluded, especially if you want to go down the entrepreneurial route.”
A different story in the US
Seres speaks from experience. The founder and CEO of 11 Health, he has innovated to allow fellow stoma patients to live better lives by making “dumb bags smart”.
Initially equipping stoma bags with sensors to prevent spills and leaks for patients who have had their bowel brought to the outside of their body and “go to the toilet in a bag attached to their abdomen,” Seres’ work has evolved.
Now, a connected sensor platform captures real-time volumetric data and bio markers, allowing patients to use their smartphone to better manage their condition.
Information is shared directly with doctors on measurements such as hydration, allowing them to make necessary adjustments remotely. And analysis can now be conducted on the content of bags without a hospital visit.
“I have a business thriving in the US and doing very poorly in the UK,” says Seres. “We are being used in 20 major centres in the US, running clinical trials across the country, and we are expanding.
“In the UK, I was turned down 43 times for funding. Why? Because I’m seen as a patient who has had high risk surgery and the likelihood is that I will be dead before the product comes out.”
Other obstacles have included a three-year delay for ethics approval to conduct a clinical trial in the UK, and being turned down twice for NHS England’s innovation and technology tariff.
“It is a different mindset. In the US, the question is: ‘How are we going to build technology that will change the paradigm?’ ‘how do we grow that and embed it?’ It is understood that the technology will reduce costs and improve quality of life.
“The role of the patient is also very different. In the US, when hospitals are operating on patients that could use our technology, doctors and nurses call us to make use of our patient champion programme. We connect patients who are just going through surgery with patients that have experienced this. It means peer to peer support and advice. In the UK, that just doesn’t happen.”
The White House values patient experience – why not the NHS?
Seres believes his “lived experience” as a patient is treated far more valuably in the US – and not just in the context of his business. “I don’t replace my medical team. But my knowledge and insight of what it is like to live my condition, and therefore my ability to make my decisions on what is right for me, is treated in equal proportions.”
As a patient, Seres was also appointed as the first e-patient in residence and executive board member at the Stanford Medicine X initiative, where he was part of a White House co-hosted workshop that is changing the patient’s role in clinical trials. He has also presented to the US Food and Drug Administration on medical technology regulation.
Taking patients as seriously in the UK is something Seres would like to see. “If Jeremy Hunt’s team included people who have lived it for 35 years, we would have the right conversations. But currently I don’t see any representation other than another lay committee. And I don’t see any innovation by a patient scaled across the system.
“The health secretary is right – the next decade is the decade to unleash patient power. But I don’t see any moves at the moment to make it happen.”