I am one of 50 or so attendees on a one day course organised by the Point of Care Foundation learning how patients like myself can work as partners with doctors and nurses to co-design a better healthcare system.

It’s not a new idea. Don Berwick, author of the NHS Patient Safety Review, pointed out ten years ago that “healthcare workers and leaders can often best find the gaps that matter by listening very carefully to the people they serve, patients and families.” While the NHS has so far picked up on the idea of “listening” with initiatives such as the Friends and Family test becoming ubiquitous in GP practices and hospitals, it’s arguable how careful this listening is.

Glenn Robert, Professor of Healthcare Quality and Innovation at King’s College London and one of the tutors on the course, gives an example of why these surveys can have little impact: comparing an older lady’s response, firstly, to a satisfaction survey of her inpatient care and then, secondly, when asked to tell her story at greater length.

To the survey question: “Overall were you treated with respect?” she answers: “Yes always.” And “overall” she says, the care received was ‘‘Excellent.” Yet when given the time and space to talk about her feelings, the same lady describes repeated experiences of casual humiliation which “I should probably have mentioned but it’s so embarrassing.” Her main complaint: ‘It does annoy me intensely, the time you have to wait for a bedpan. They (the nurses) just say: ‘Oh well it can’t be helped when you’re ill. And I thought: if only you’d brought the bedpan you wouldn’t have had to strip the bed and I wouldn’t be so embarrassed.'”

It’s a no-brainer as she explains it: a top priority for improving the quality of care of an older—or indeed any—immobilised patient is for them to get a bedpan as soon as they need it, no doubt tricky in a busy ward, but surely not impossible. Yet it doesn’t happen—not because a decision has been made but because thousands of times every day no-one talks about it, including those who are most hurt. “People don’t complain about what really matters to them in healthcare often because by the time they’re asked, they’ve had to put it behind them,” explains Roberts. This course is intended to show how that can be changed.

Experience-Based Co-Design (EBCD) offers the opportunity to design the experience of healthcare at a profound level, building on what Jocelyn Cornwell, chief executive of the Point of Care Foundation, describes as “the long and illustrious history of professionals and users working together to design buildings and software.” Projects are time-consuming: the average journey for the 50 or so projects so far undertaken in the NHS, is between six months and a year. The first challenge, is to identify “touch points,” sometimes called the moments of truth of the patient experience: “experiences that resonate especially powerfully either positively or negatively,” explains Cornwell.

It’s carried out by a “core” team of EBCD-literate lay and professional people who interview, and sometimes film, patients and staff in a particular healthcare setting—and then use this “specialist form of knowledge” to underpin co-design, the process of collaborative change.

“Co-design involves enhancing the positive touch points and reducing or getting rid of negative touch points—and is achieved by bringing together the different but equally valid expertise of professional and user,” explains Professor Roberts. “Success,” he says, “depends on the extent to which staff and patients are able to work together to devise, test, and own the changes that are made. It should be judged by the impact on staff values and ways of thinking and doing as well as visible changes,” he says.

“Ultimately,” says Cornwell, hospital consultant appointments could be based on applicants’ plans to improve quality using projects like EBCD. In the meantime, she says, trusts should train their QI team in the methodology of co-design so they can use it where appropriate – bringing in patients as required.” One of several EBCD toolkits is available from the Kings Fund.

The idea that healthcare can be “designed” to be as consumer friendly as today’s computers is exciting and meaningful to everyone on the course: anyone can recognise interactions that have been designed (even a little bit) and those with the design flaws of an IBM computer circa 1985. We’re left with a question: will doctors, especially those in a position to lead in such matters, be prepared to welcome patients to interrogate and improve the way they work?

Jane Feinmann is a freelance medical journalist  with a particular interest in patient safety based in London. She belongs to Imperial College Health Partners’ Patient Safety Champion Network.

Competing interests: The author has no competing interests to declare.