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Paul Wicks: Patients take centre stage at the 4th NHS Expo

14 Mar, 14 | by BMJ

paul_wicksThis year’s NHS Health and Care Innovation Expo was held at the sympathetically converted former train station Manchester Central and felt more like a festival than a trade show. Volunteers from health and social care offered hands-on training sessions at the lunar domes of Camp Expo, which drew on the traditions of the tech industry’s “unconference” format to allow people to sign up spontaneously to host sessions and for delegates to vote with their feet.

Lessons learned from previous years meant free Wi-Fi, a more interactive format, and a greater density of coffee shops to facilitate conversations. Due in part to this improved technical infrastructure this was also the year in which social media took increasing precedence, particularly Twitter, with the #expo14nhs hashtag yielding nearly 14,000 tweets from over 3,000 contributors, according to Eventify.

As for the ingredients there appear to have been major changes here too—where once this was a meeting dominated by, how can I put this delicately, old white guys in suits—this year felt younger, more diverse, and importantly there were patients on the platform, leading workshops, and throughout the meeting as engaged participants.

The meeting saw the launch of NHS Citizen, a project designed to bring more democratic principles to decision making in the NHS, and hold NHS England accountable to service users. As with Camp Expo, elements of this draw upon software programming traditions such as Agile Programming, which emphasizes shorter targeted “sprints” of work which iterate and adapt as they go along, rather than the more traditional “waterfall” planning process in which chunks of work are planned out years in advance, before anything has been learned. This often leads to projects which scramble to catch up with impossible deadlines or fail to take onboard new information.

Although pains had obviously been taken to maximize the representativeness of the NHS Citizens on stage, questions from the audience highlighted that true balance is hard to achieve—why weren’t there more older people? Was anyone on the panel transgender? Where was someone with a learning disability? These will be important challenges for the group to overcome but so far their open approach and humility inspires confidence.

The most fascinating talk for me was at the cosy, “Living Room” stage where former Tomorrow’s World presenter Vivienne Parry adroitly hosted a panel of Bruce Keogh, Don Redding, and Giles Wilmore responding to a presentation from boiler engineer and Marfan syndrome patient Tal Golesworthy.

In an updated re-run of his TED talk (which has garnered nearly a million views) Tal recounted being informed of the treatment options for his aortic dilation, a feature of Marfan syndrome. When offered the risks and benefits of composite aortic root graft surgery and the lifelong Warfarin therapy that came with it, he didn’t just make an informed decision, he proposed an alternative solution. With the right help he thought he could do better. With no medical training he sought to design and manufacture a personalised external aortic root support (PEARS) that would negate the need for surgery. Tellingly he had to go far outside traditional NHS innovation channels, drawing upon philanthropic fundraising and the experience of his medical team, as well as other patients who donated their data and took part in trials for the new intervention. So far the procedure has been piloted on 40 patients (including Tal as the first recipient) with results presented in cardiology conference proceedings and peer reviewed journals. NICE’s guidance on PEARS recommends special arrangements for audit given the small number of participants and short follow-up, but it remains an engaging case study.

For me this session encapsulated much about our current understanding of innovation. Yes, there were gizmos involved—Tal’s team benefitted immensely from MRI imaging, computer aided design software, and rapid 3D prototyping of his device (he likes to carry one in his pocket). But what feels far more exciting is the change in human behavior that technology enables—that a motivated patient with no medical training can rally a team, identify new resources, and introduce an idea that can stand on its own two feet and be assessed in the traditional way. It’s not a listening exercise, or tokenism, or a seat at the table, it’s patients owning the problem and leading on finding a solution.

One audience member asked if there was a risk that the patient voice in such initiatives risked being overly biased by unrepresentative patients like Tal, who are clearly articulate and engaged, but I felt like the questioner missed the point. The status quo prior has traditionally involved very little in the way of harnessing solutions from any patient, articulate or not, and although Tal was the leader on this project, many more patients were involved in other ways. More to the point, it is the invention of PEARS itself that is being tested not the inventor, and within clinical research we hardly hold ourselves to such arbitrary standards.

Also raised were serious issues concerning trust, no more so than the care.data debate which spanned newspapers, Parliamentary select committees, and the ever-present Twitter. The six month “pause” on the roll out and proposed legislation around making it illegal to sell the data to insurance companies was a welcome move, and the mood of the conference appeared to be that although mistakes had been made and further public input was needed, the value inherent in NHS data was too important to risk squandering, so the right path forward would be found.

Despite tough issues and the reflexive skepticism of those who have worked in healthcare for any period of time, it was impossible to ignore the exuberant force for positive change of “NHS Change Day” activists who invited simple, actionable changes from staff across the service. These ranged from a doctor volunteering to lie on a spinal board for an hour, to a pediatrician being given a taste of his own (patients’) medicine, and the inimitable Kate Granger and her “hello my name is” pledge. The message to me from this event was clear—the nature of “innovation” in healthcare is changing, from expensive top-down technocentric whizzbangs with uncertain outputs, to the continual application of cheaper grassroots-led changes in practice which emphasize compassion over technology and that will benefit patients (and staff) much sooner than we think.

Competing interests: Paul Wicks is an employee of PatientsLikeMe and receives research funding from pharmaceutical companies. He has previously been an invited speaker at the Expo and TED.

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  • http://walkingforheartkids.blogspot.co.uk/ Paul Willgoss

    Hi,
    There is much of merit in the NHS Citizen model, however I agree with the question about unrepresentative patients. I couldn’t attend both days – due to work commitments, the Monday I attended was annual leave. There is a real risk that the NHS Citizen project will become a case of those who can attend have a voice. Relying on twitter/social media is not the full answer either…

    It’s a challenge I have constantly given to the NHS England team, and one I have never heard an answer too – just that its an “ongoing conversation”.

    Paul
    NHS trained Expert Patient
    Impairment Specific Charity Trustee
    Patient Leader
    Apparently an NHS Citizen and Patient Ambassador…

  • http://walkingforheartkids.blogspot.co.uk/ Paul Willgoss

    Hi,
    Although there is much of merit in the NHS Citizen project there is a real risk of leaving people out in the cold. For example – I work full time and could only attend on the first day by taking Annual Leave – my holiday. Social Media is not the full answer either. I’ve given this challenge to NHS England’s team on a number of occasions and never gained a full response – saying that the conversation is “ongoing” is worrying when a group of people have been formed as an “assembly” and are giving their views to the NHS Board… I don’t know if they are representative, I genuinely don’t – but please make sure that someone does…

    Paul

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