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UK patient uses online doctor ratings to choose brain surgeon

February 23, 2014

“I’m afraid I’ve got bad news for you, the results of the scan shows there’s a tumour growing in your brain Richard, and you need surgery to try to remove it”

Most of us cannot even imagine what it must be like to be given such news, or how it feels to cope with the avalanche of fears, worries, questions and uncertainty that such news immediately triggers.

 

Richard is a 38 year old self-confessed, “sports-nut“, who just two weeks earlier had been charging around the 5-a-side football field as he did every Thursday evening with his friends – all trying to keep their “middle-aged spread” at bay. His thoughts were on the plans that he and his fiancee were making for their wedding day, and how to ensure he looked good in his suit. His biggest concern was keeping fit, he never thought that he’d be facing his own mortality – cancer was not something that was meant to happen to a healthy, fit person like him, let alone a brain tumour.

As the risks of surgery were explained – death, permanent disability, personality change – Richard and his fiancee struggled to take it all in. What did it mean for his job, for their life together? What was it actually like to go through the surgery, what would life be like afterwards? How could they prepare their family for what the future might hold?

At times it seemed just too difficult to comprehend, just unreal. But now it was all too real for Richard.

He was sitting in front of a man he’d never met before, who was telling him that he needed to open his skull, and put his hands inside his brain.

The surgeon seemed caring, knowledgeable and confident, but then he’d never met a neurosurgeon before and how could he really know whether this one was any good, whether he could literally trust him with his life? Did he have any other choice?

Just as these thoughts raced around his mind, the surgeon said, “I expect you have many questions about the surgery, and about myself and the team on the unit here.” This was exactly what Richard had been thinking – thoughts shared by most other patients and their families finding themselves in a similar position, whether for a brain tumour or any other cancer or complex, dangerous treatment.

So far, so normal – a difficult, emotional conversation, but one that is “standard”, and takes place in clinics and hospitals across the UK (indeed, across the world) every day of the week.

But what happened next was anything but normal – although it very soon will be across the whole of the NHS.

Most doctors in such situations tell patients not to read too much on the Internet, knowing that the extreme, dramatic cases that too often swamp the more typical – but less dramatic – clinical accounts can frighten families unnecessarily. Richard’s surgeon did the very opposite.

“I’d like you to look me up online. When you get home just Google my name.”

He went on to explain how he routinely asks all his patients to “rate and review” the care that he and his team provide, directing them to what the UK media call the nation’s “TripAdvisor of Health”, the independent website, iWantGreatCare.

After a long, emotionally charged consultation Richard and his fiancee were given the usual “information for patients” and made their way home still grappling with all they’d been told. The leaflets they’d been given described what might happen to them, about the operation and lots of detail about possible side-effects, but it didn’t tell them one of the most important things that they both wanted to know. How could they tell whether to trust the surgeon they’d only met for the first time that day? Did he and his team deliver great care, or should they go elsewhere, or maybe it would be best not to have the surgery at all? After all, it had been explained to him that it came with no guarantee of a cure for his cancer. So he went online and did as the surgeon had suggested, typing his surgeon’s name into Google.

Right at the top of the Google results, position number one, was the review page for Richard’s surgeon. Google rankings favour independent, crowd-sourced reviews, especially when the content is added to and updated as frequently as is the case for his surgeon. Any clinician with a few dozen patient reviews will find this page is the top result when they, or their patients, Google their name.

Clicking through, Richard and his fiancee were immediately able to read detailed reviews from patients and families just like them, those who had been in their position and had made the decision to have surgery. And these were not just two or three word “thank-yous”, rather they were frequently long, detailed, personal and emotional accounts of incredible care provided time and time again to patients who had put their total confidence in the whole team (ward-clerks, nurses, physios, theatre-staff, anaesthetists and surgeons).

“The website was very useful in helping us decide to go for the operation (which in hindsight was essential to my life!) and gave us great confidence in the team performing my surgery.”

Reading the honest, open, unedited accounts, Richard recognised kindred spirits. The words and emotion in the accounts resonated with the challenges, fears and hopes he now had – in a way that reading information leaflets could not. Talking with the kind nurse-specialist had provided support, but it could never provide the insight from reading dozens and dozens of accounts of what he was about to undergo, the same ward, the same surgeon – as seen through the eyes of people just like himself.

As Richard and his fiancee read the words of others they found them more than useful. In fact, the reviews played such an important role in supporting them, helping them come to terms with what lay ahead, and ultimately helping them “decide to go for the operation”, that as he lay in the hospital bed recovering from his surgery he phoned the iWantGreatCare office to say thank you for making the words of others available in this way – not just for him, but for the thousands of other patients and families facing a similar situation every week. Over and above helping them make the decision to go ahead with his brain-surgery, the words of others gave them deep confidence in those dedicated, professionals who would be caring for him. Having read stories from “people just like me”, Richard realised that he was lucky enough to live near a world-class neurosurgery centre, one where everybody would give him truly great care.

When he called, Richard wasn’t just thanking the small, dedicated team at iWantGreatCare – although everyone in the office found his words moving, motivating and emotional. Rather, by thanking iWantGreatCare he was also indirectly expressing his gratitude to all those patients who each day give their time to add a review of their care, now over 750,000 of them in the UK alone. Every piece of feedback is an anonymous, altruistic gift from one patient to the next: the reviewer gets no personal benefit, knows not who their story will help, or how their words will benefit, yet makes the effort to thank those who’ve cared for them, and by doing so helps whoever might be in similar need.

In some ways rating and reviewing your care is the online, digital equivalent of donating blood – but without the needle or the tea and biscuits afterwards.

Whether the reviews are totally positive and incredibly reassuring (as over 92% of are), or highlight areas for improvement where patients and their families want care to be better for the next person – each and every word provides unique benefits to both patients and hard-working NHS staff.

Richard and his family know this in a deeply personal way and that is why he offered to help in any way that might benefit other patients, kindly giving his permission for me to tell his story in  this blog and national media. But as he recovered from his surgery he wasn’t the only one thinking selflessly about how such patient feedback could help the next patient.

In a subsequent email he described to me how, when he asked his surgeon what he could ever do to show his thanks for the operation and great care he was receiving. His surgeon replied simply, “why don’t you help the next patient by adding your review, telling your story – that would be the best way you could thank me and the team here.”

These words not only highlight just what a remarkable man his surgeon is, and how lucky we are to have an NHS full of such people, but make clear a point of much wider importance for every clinician in the NHS, indeed for every Chief Executive running NHS Trusts.

Why does this neurosurgeon ask all his patients for feedback on a site where he cannot edit or change a single word written about him and his team – good or bad? Why does he take the risk that a single, unhappy patient could write something horrendously critical? Or worse, that a grieving, angry family could blame him and his team in such a public arena?

Richard’s surgeon, like many thousands of other doctors, specialists and GPs across the UK, thinks in a far bigger way than that. He knows that medicine is not a career for someone who is more concerned with their own reputation than the well-being of their patients. He knows that neither are these two things mutually exclusive: that professional reputation should be founded on what your patients think of you, how you change their lives, how you help them in the darkest moments of their lives. He knows that asking every single patient and their family to provide feedback provides an incredibly powerful source of real-time information which, alongside clinical and safety data, enables him to continuously judge the quality of care provided by him, his team and the unit he leads. But – and this is where he is a true, visionary pioneer – he knows that far more important than what ratings and reviews from his patients tell him about the quality of care he delivers, is what these personal stories can do for the patients he hasn’t met yet, the people who don’t even know that they will need his help in the future, the people cycling to work today, playing 5-a-side football tonight with no idea that they will be faced with what Richard and his family have gone through. People like you, reading this article.

However the only way such accounts can have this transformative impact – not just for individuals, but indeed for the NHS as it changes to meet the challenges ahead – is when all patient feedback is shared, openly and transparently in a way that is easy, clear, familiar and trusted by the public. This is not about providers or their regulators producing dense spreadsheets or pdfs, nor is it about hospitals running their own websites which remove the most critical comments about hospitals and doctors. Rather, it is about a truly, open and independent environment in which every word of every patient is made available for the next family. When people want to know about the Hilton they do not go Hilton.com, rather they go to TripAdvisor where they know they will read the honest, unbiased, independent truth.

It is fundamental that everyone working in, leading or managing healthcare makes it incredibly easy for those they care for to provide such feedback, it should be as easy as rating and reviewing a book on Amazon, or a seller on eBay. Just as Richard’s surgeon does, and indeed as thousands of doctors and dentists now do every day,

having made the immediate, real-time voice of the patient a fundamental part of their clinical practice, their professional development and of how they build trust, understanding and confidence with those they have the honour of caring for.

 

At the same time the public and patients have an even more powerful role – if you or someone you love has been cared for recently you must take the opportunity to provide feedback, and if you are not offered that chance, then you should demand it. You have the power to help the next patient like you, and acting together the voice of patients will is transforming healthcare.

The final word should (always) be the voice of the patient. In Richard’s own words:

“I sit here writing this review 10 days after a 12 hour brain surgery operation with a grade 2 verdict on the tumour itself. Incredibly yesterday, he phoned me personally to deliver this news, expectation was that it would have been a grade one, I suspect lesser people may have chosen to allow their staff to deliver less positive news. This experience has inspired me to want to give something back, incredible people doing an incredible job, in a very humble manner. I will act on this in various ways as soon as I’m able.”

 

If you are a patient, a friend, family-member or carer, and like Richard, you wish to help the next patient. Add a review of your care.

Do you run a health charity and would like to join those charities which have partnered with iWGC, helping their patients and raising money for your charity at the same time?

Are you a doctor who wants to deliver the same benefits to your patients as does Richard’s surgeon?

Are you the CEO or Chairman of a hospital and want to see why other Chief Executives say this is a “game-changer”?

——————-

Declaration of interest. As the author of this article, and a doctor, I am profoundly biased and non-independent. I believe that the voice, opinion, experience and interests of our patients should always be at the very centre of healthcare, that every patient should be heard and that doing so will lead to continuous and profound improvements for both patients and those who look after them. That is why I founded iWantGreatCare in 2008.

 

Publications and back-ground material

 

 

[Footnote: iWantGreatCare.org is not just for those having neurosurgery or diagnosed with cancer, but rather is available to – and already used by all sorts of patients, to rate and review all care – whether that be your GP, hospital specialists, surgeons or dentists. Similarly, all types of clinicians use the free service, asking their patients to “rate and review” them in a totally open, transparent, shared way.]

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