Back in 2002, I learned a valuable lesson: The patient’s view is paramount.
Building user involvement in Motor Neurone Disease was a service improvement project at King’s College Hospital that included an in-person support group, newsletter, dedicated telephone group, and an online asynchronous message board or ‘forum’.
As the lead researcher wound down the project, the team found there were two young patients, diagnosed in their early 20s, still using the forum to communicate.
That’s when I offered to become a moderator so that patients would have a place to vent their frustration about services – a subject I will be discussing at this year’s Health Policy Summit – but also to connect with one another and provide tips on living well with illness.
Over the following years the membership built up to hundreds of patients and care-givers.
It was here I learned that for every written complaint that comes in through official channels, there are dozens of points of feedback that go unrecorded and unused in the improvement of services.
Today, the UK has a number of great patient feedback systems for many different types of patients including NHS Choices, Patient Opinion, and iWantGreatCare, which allow patients to provide feedback that travels right back to the decision makers that need it.
But is it meaningful? Can we address the criticisms leveled at patient feedback in order to improve quality?
Critics suggest that patient-reported feedback, particularly feedback online, is undermined by selection bias. In 2012, Greaves et al. analysed 24 months’ worth of NHS Choices patient-submitted ratings for 146 general acute hospitals and found they were significantly correlated with survey data collected in a more rigorous fashion.
Although the correlations were modest (r=0.3 to 0.5), feedback is freely available and potentially more democratic.
We also have the opportunity to slice and dice the big data all around us to create more personalised application.
The GP Ratings app mines over 11 million patient survey responses – about 8,344 GP ratings throughout England – and then uses GPS to tailor that data locally.
Many patients make decisions on which GP surgery to choose on the basis of local recommendations or where is most convenient for them. I personally used this tool to change my family GP and hope to learn more from open data shared by other patients.
The final example comes from my own work studying epilepsy in the United States. When the American Academy of Neurology published their proposed quality guidelines for the National Quality Forum, they had no idea how many of them were being adhered to already.
Using the online network, PatientsLikeMe were able to survey hundreds of epilepsy patients before the guidelines were even published. Through this study, we identified gaps in care, particularly for non-specialists, that have gone on to inform clinical training and have helped to define the most important quality measures that require systematic checking in epilepsy.
Ultimately, health care should be about outcomes, not opinions. And we should all be working towards better quantifiable outcome measurements for patients with long-term conditions.
So, together we can help patients share their data to become the driving force of a learning health care system.
Paul Wicks is Research and Development Director at PatientsLikeMe. Please note that the views expressed in guest blogs on the Nuffield Trust website are the authors’ own.