Patient Opinion

Using the power of the internet to give NHS users a voice

New technologies have been revolutionising banking, music and the media for some time, but now the changes are even reaching the National Health Service – from the new wealth of information available to both patients and doctors, to mobile phone video clips of hospital incidents on YouTube and unflattering pictures of NHS toilets on Flickr. The new capabilities of mobile technologies and web 2.0 are enabling people to respond, discuss and participate in their own health care. They allow patients’ voices to be heard.

In 2004, before these technologies were widely discussed in the press or public services, Dr Paul Hodgkin proposed an interactive website for patient opinions to the Department of Health. At that time the NHS was managed by macro-level targets. The idea of Patient Opinion was to create a space where patients and carers could rate the service they had received, and share their stories and experiences of the NHS.

“While some of the audience for my Patient Opinion proposal found the technology fascinating, 70% were sceptical. They asked why do people need or want it; will the results be any use?”

But Paul’s track record as a medical practitioner and social entrepreneur persuaded the panel to agree cautiously that he could explore the concept further. In January 2005, the Department of Health and his local Strategic Health Authority awarded a £230,000 contract to design and develop a website for gathering and processing patient feedback. The resulting service had to become self-financing within eighteen months.

Paul was joined by James Munro, also a public health doctor. The first nine months were focused on market analysis in preparation for technical development, and consultations revealed that NHS Trust Chief Executives could appreciate the potential value of the democratisation afforded by these new technologies.

Paul sees the web as driving down the cost of interaction to near zero, which makes it easier to engage directly with individuals. “Web 2.0 is citizen-centred and offers cheap tools ‘delivered to your home’. Patient Opinion is a place for expressing personal worries and micro aspects of care. It offers collective wisdom while, at the same time, it is very localised in terms of feedback and influence.”

Patient Opinion is a platform for conversations about issues. It is not solely about feedback or data or service improvement – even though all these are an outcome. Anyone can view the stories on Patient Opinion. Organisations that subscribe can post responses – as can Members of Parliament and health-related charities like Asthma UK.

Feedback is targeted to precisely the appropriate NHS manager. These managers can set RSS feeds so they receive only the postings relevant to their responsibilities, and Patient Opinion’s data analysis tools enable them to benchmark their service’s ratings against comparator sites.

As Paul points out “… the concerns of one hospital will differ from others. You want your conversation to hit the four or five relevant people and the Minister. And because each story is post-coded it will also reach your MP.”

Roll-out of the completed and tested website started in early 2006 and by the end of 2008 over 9,000 stories had been shared by patients. Today Paul has a team of five full-time equivalent staff supplemented with three NHS consultants who each give three days per week.

Money is not the main driver for the project and there is no advertising. But already, 55 NHS Acute and Primary Care Trusts each currently subscribe £8,000 per annum for the service. This allows the project to break even. “Patient Opinion is not dependent on big grants; 95% of income is from subscriptions … but cash flow is always an issue.”

A key realisation was that not every patient has ‘on demand’ access to the internet. Accordingly Patient Opinion also allows people to give their opinion by filling in a pre-paid postal form or by using an 0845 free-phone number. Submissions via these channels are transcribed by Paul’s office staff. In practice 30% of patients fill in a form, 5% use the 0845 number and 65% use the web.

“Web commerce is desire driven whereas classic health behaviour on the web is driven by anxiety or gratitude or the search for information or support.” And, contrary to the apprehensions of middle managers, over 50% of all submissions have been to express gratitude for the health care they or their loved ones have received. In fact, fewer than 20% have been critical and on very few occasions has offensive language had to be removed. “I’m glad to say that the majority of conversations on Patient Opinion are ‘us-driven’. And this is breaking down institutional inertia.”

Paul believes Patient Opinion has proved itself to be both innovative and valuable. “The NHS simply can’t innovate as fast … but we do see that PCTs are learning the conversational style of response. Using the new tools, we’ve achieved 80% of our goals. The remaining 20% is about scaling up. We do have a national profile with about 70% of the UK covered. But we are still working at it because some regions are better represented than others." The expected signing up of 70 mental health organisations will improve the geographical spread.

Paul’s vision is to build Patient Opinion into a national platform where hundreds of thousands of people can have a conversation about care. In 2007 the Department of Health decided to create its own version of have a conversation about care. In 2007 the Department of Health decided to create its own version of Patient Opinion. Paul has neither helped nor hindered. “Let them succeed; these wonderful tools allow for enough diversity.”