Think of any customer-facing business that has thrived in the online age and chances are they will have some form of feedback service; from Amazon’s well-used reviews to TripAdvisor’s revolution of the travel industry.

Healthcare has traditionally been something of a one-sided discourse, however, with doctors the authority on what is best for the patient.

The information revolution that transformed other industries is helping to turn that idea on its head, though, and tools are emerging to give patients the chance to comment on the care they receive; and on the doctors and other clinicians who deliver it.

My opinion counts

One of the earliest means for patients in the UK to get their voice heard was the Patient Opinion website, founded by GP Paul Hodgkin in 2005 as a way for patients and family members to share their stories of using a health service.

The website has since emerged as one of the most successful of its kind, with 119,610 patient stories – both positive and negative – available to read and 4,042 health and social care staff signed up to receive email alerts when stories are published that are relevant to them.

Patient Opinion is a respected site with some influence – the Care Quality Commission receives all published stories and uses them to improve services – but collating and analysing real-time data in order to influence a direct impact remains a challenge.

This was something that fellow early pioneer Dr Neil Bacon wanted to address with IWantGreatCare, a website launched in 2008 to let patients rate and review every clinician involved in their care, including a star rating.

At the time of its launch, the site was seen as something of a threat by some in the the healthcare profession, with the potential for clinicians to be exposed to malicious vendettas and the potential of libel actions over critical comments.

Bacon says that these concerns were mainly from a small number of mainly older doctors who fear transparency and competition and would be against any change in the NHS.

In the seven years since launch, Bacon says there have been fewer and fewer negative voices as the older generation retires; and a new generation comes through that accepts the need for transparency (and is used to using review sites itself).

 “I think in five years, nobody will go to a GP without first checking if there is a review somewhere,” says Bacon.

The site now has more than 2.2 million reviews for services in the UK, covering nearly 2,000 GP practices, while around 40% of feedback on hospital services comes via IWantGreatCare.

A European idea struggles in the UK

Negative feedback from healthcare professionals was something that Frederic Llordachs, head of global business development at Spanish company Doctoralia, expected with the launch of its healthcare directory tool.

This is available both in a browser and as an app and allows users to review more than 100,000 registered professionals across the world.

Discussing the introduction of a rating system for healthcare professionals, he says he expected doctors to be “calling us, yelling at us, event taking us to court.”

Yet these predictions didn’t come to pass. Llordachs suggests this is because clinicians know they have to provide suitable customer service, as people will talk about their experience on the internet regardless.

Doctoralia is now used by more than tens of millions of people worldwide, but uptake of the app in the UK has been a struggle, says Llordachs.

Expectations were high when the app was recommended on the NHS Choices’ app library, but this did not lead to any significant improvement. Also, the tool has been removed from the library after privacy campaigners raised concerns that it did not comply with the Data Protection Act.

Apps in the US

Doctoralia and other tools like it are seeing greater use in other countries, however. That’s particularly true of the US, where the private healthcare system ensures plenty of competition among different clinics.

Popular apps available in the country include BetterDoctor, which co-founder and CEO Ari Tulla says he started after moving to the US from Finland, and realising that finding a doctor was “too time intensive and complex”.

Since launching in 2011 more than 20 million patients have used either the service, which is available as a browser-based tool or an app. It uses an algorithm to assess a doctor's education, experience and referral network to help patients decide what doctor will benefit them the most.

A spokesperson for ZocDoc – a similar tool – explains the company’s story began in 2007 when founder and CEO Cyrus Massoumi burst his eardrum and had to wait four days to see a doctor.

The incident spurred Massoumi to begin working on a tool for online appointment booking, before developing the service to allow patients to “make informed choices with verified reviews” on the professionals they see, including star ratings. ZocDoc is now available in all 50 US states and serves millions of patients each month.

A localised approach

Such figures are yet to be matched by any app in the UK. Take a similar tool such as Wellnote, developed by Lord Ara Darzi and Imperial College London, to let users rate the quality and experience of a healthcare service.

Even though it also featured in the NHS app library, usage seems to be limited. A quick browse of GP practices close to the Digital Health office shows there are only two ratings for a total of 50 organisations in a two mile radius.

This may be a legacy of patients just registering with the practice nearest to them, in the belief that all NHS services do more or less the same thing, and operate to more or less the same standards (even if those working in them know this is not true).

Or it may be down to the belief that the health service will do little or nothing about feedback. After all, any number of reports on NHS complaints have found that one reason relatively few people complain is that they think nothing will be done.

A more suitable approach for the NHS may be one that takes into account the power of local influence, with trusts and clinical commissioning groups taking feedback into their own hands.

One trust making use of app technology to get real time patient feedback is Birmingham Children's Hospital NHS Foundation Trust, which was inspired to develop an anonymous feedback tool after noticing that people were using Twitter and Facebook to air frustrations.

Gaby Insley, head of communications at the trust, says the app gives people more confidence that their comments will be listened to than traditional feedback systems, such as cards. The trust also aims to act fast, with the patient experience team aiming to provide a response within 24 hours (a target it has met).

She adds that people aren’t using the app, which receives around three to five messages a day, to moan or complain, but rather to support improved service. “People want to have a good experience. And they want to help you make it better.”

The app was developed in partnership with local tech company Digital Life Sciences, which has used its fundamentals to develop that Talk To app, which allows patients to feedback on services in Birmingham’s GP super-practice the Vitality Partnership and NHS Tayside in Scotland.  

Melissa Nurcombe, head of sales and marketing, Digital Life Sciences, says: “It gives staff instant feedback, whether that's positive which has had the effect of raising morale or highlighting issues, which allow speedy resolution and may otherwise have gone unnoticed.”

Friends and family test

Some NHS organisations are also linking this local information back to NHS England via the Friends and Family Test, a system set up in 2013 to allow patients to feedback on NHS services based on whether they would recommend them to friends or family.

According to Tim Kelsey, NHS England’s national director for patients and information, around 7.5 million people have now used the test, the results of which are published on NHS Choices.

The Salisbury Hospital, which is recommended on the NHS Choices app library, allows patients at Salisbury District Hospital to give real time feedback using the Friends and Family Test.

And South West Commissioning Support Unit has developed separate apps for long-term conditions and maternity, working in partnership with MyOxygen. Both allow patients in Somerset to access the test.

IWantGreatCare is also the largest provider of the NHS Friends and Family Test, reporting feedback from thousands of patients every week.

More power on the way

The uptake of some tools may be limited at the moment, at least in the UK, but the vast numbers who have used the Friends and Family Test in some capacity shows that there is appetite for a voice to be heard.

 As such, it’s hard to believe that a ratings service or app won’t take off at some point; or that trusts and practices won’t find they have to be seen to respond. After all, who is better placed to determine what constitutes good care than those on the receiving end?

Tom Meek

Thomas Meek is a reporter at Digital Health News.

February 2015 after spending several years writing about the pharmaceutical industry and healthcare communications, where he developed his interest in using new technologies to support patient care and education. He has a degree in journalism from The University of Stirling.

Find him on Twitter at @DHTomMeek