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'Nobody has a stronger incentive for high-quality care than the patient'

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Patient experiences can lead to positive change that is not costly to implement

Every health system in the world is under pressure to improve effectiveness and efficiency. In the UK, we have seen repeated and costly “re-disorganisations” of the health service as a result, with limited evidence of benefit.

But what if there was another way to improve care? Top-down change has been costly, disruptive and, ultimately, disappointing. So, instead of just bottom-up change, what about outside-in change, too?

For the past 10 years, that’s what we’ve been pursuing at Patient Opinion, a non-profit social enterprise that provides a public, online feedback service for patients and carers in the UK, Ireland and Australia. We start from two premises: nobody has a stronger incentive for high-quality care than the patient, and no one else knows some important things that patients know.

Some years ago, a man recovering from hip surgery wrote on Patient Opinion: “What needs improvement are the toilet seats. Those on wheelchairs and fitted to the home toilet… are useless.

“They are only made for women… With a knee/hip replacement operation it becomes like mission impossible. I spoke to eight other men who agreed.”

And recently a mother wrote: “During my daughter’s admission not one person introduced themselves to me of their own accord.”

“Patients and carers know a surprising amount about healthcare”

Patients and carers know a surprising amount about healthcare. They know how it feels, whether interventions and systems work, and whether care is joined up. Who knows whether a toilet seat is fit for purpose? Only the patient who has had hip surgery. Who knows whether care is “integrated” or “patient centred”? Only the patient.

Most people who share their stories on the site do so to encourage and support staff, and help make care better for the next patient. But can their stories really make a difference? Yes, they can.

One user of a drug and alcohol service in the North West found that, when his methadone prescription ran out on a Friday, he did not always get it refilled before the weekend. He asked a simple question: “Why do we end prescriptions on Fridays?”

After some deliberation on and offline, the trust updated its policy: “Our doctors will no longer write prescriptions that end on a Friday. This will mean no one else will have the difficulties you did.”

This change, prompted by a simple question, improved life for users and reduced Monday morning service demand.

On the Isle of Wight, a woman posted about the upset of being contacted by community midwives who knew nothing of her recent miscarriage. In response, the trust made practical changes to communication between sonographers and midwives.

In these examples, services are being improved in small but significant ways. They are also usually inexpensive to implement. But how does this unstructured, unpredictable and very public process feel for the staff involved? Can this kind of outside-in change fit with clinical priorities and organisational processes?

A podiatrist using Patient Opinion in her service admits: “It was a bit nerve wracking to reply publicly to start with, but a lot of us have gained confidence. Users and carers now have trust in us to know we do want to hear it, warts and all.”

“Staff are often fearful that online feedback will increase the “burden of complaints” and lead to blame”

Staff are often fearful that online feedback will increase the “burden of complaints” and lead to blame. But a hospital clinical director told us: “It helps to reduce complaints. We can contact a user straight away and avoid a lengthy complaint response. It’s better for us and it’s better for the patient.”

When feedback and responses are public, the impact can spread beyond the original issue, changing relationships and even cultures.

Surprisingly to some, at least half of the stories posted are positive, praising staff who went above and beyond, and saying “thank you” for great care. These can be equally powerful.

This kind of healthcare change is far from being top down or policy driven. It is change that emerges from the ever-developing relationships between people who must rely on services, and those whose vocation is to provide them.

It is a small, human scale - meaningful yet scalable right across the system.

And it reminds us that empowering patients does not mean disempowering staff.

James Munro, chief executive, Patient Opinion

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