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Patient Opinion

Author: Julie Caulier Grice
Published Date: 22 February 2008

Patient Opinion is a user generated website and non-profit company.

Patient Opinion was founded by Dr. Paul Hodgkin (a Sheffield GP and social entrepreneur who studied at the School of Social Entrepreneurs) in response to what he felt was a need for patients to be able to share opinions about their healthcare, both with the NHS and each other, for support. The initial phase of Patient Opinion was funded by the Department of Health and South Yorkshire Strategic Health Authority.

From 2006 Patient Opinion has been funded by selling data back to hospitals and Primary Care Trusts. It is a good example of a social innovation that responded to public demand at a time when official initiatives were not and one which made the best available use of technology to contribute to civil society. It is also an innovation which is yet to reach its full potential.

From conception to widespread acceptance
Early 2000: Use of waiting lists and hospital star ratings for patients to rate their hospitals

2001: Paul Hodgkin attempts to set up a social enterprise called Get Fresh to raise money for community groups by grinding fresh coffee from beans and selling it for profit. It failed but it fuelled Hodgkin’s desire to find an enterprise that worked

2001-3: Hodgkin attempts to set up a diabetic contact group to train lay people to inject each other. Again this was unsuccessful

December 2004: Hodgkin attends a course at the School of Social Entrepreneurs which he credits with helping him clarify his early ideas about Patient Opinion

End 2004: Rise of the ‘choice’ agenda in build up to the May 2005 general election

End 2005: Four month pilot of Patient Opinion website in South Yorkshire

January 2006: National website launch

June 2006: Version 2.0 of website launched to help direct feeds to individual managers and to make it easier for trusts to respond

July 2006: Achieved New Statesman New Media Award for Contribution to Civic Society

2007: Announcement of new Choice website by Patricia Hewitt (although Patient Opinion was not included in the tendering process)

The Origins of Patient Opinion
Paul Hodgkin started Patient Opinion. He was a Sheffield GP and social entrepreneur who had experience of setting up other social enterprises (e.g. with those with learning disabilities and diabetes). He identified a widening gap between the NHS approach to patient feedback and involvement, and the striking influence that web developments were having on feedback in service industries such as banking, retail, travel, telecoms and insurance. Instead of relying on the mainstream theories of exit (where people choose to leave a provider and this in turn creates pressure for improvement) and voice (where people suggest, complain or campaign for improvements directly with the provider), he was influenced by websites such as eBay which instead rely on a highly visible system of reputations. He felt it would be beneficial to apply this approach to the NHS and was keen to start it before the opportunity was taken by a profit making organisation.

Hodgkin was working in the context of an NHS that, over the last twenty years had begun to clarify its provision through National Service Frameworks, star ratings, Healthcare Standards and the National Institute for Clinical Excellence (NICE). Patients’ exit choices had been strengthened through creating markets e.g. fund-holding, choice and payment by results. There were also moves towards making patients’ voices heard: initially through Community Health Councils. These were then replaced with Patient Forums and latterly Local Information Networks (LINks). However, in Hodgkin’s view, strengthening patient voice was the weakest of these trends. What is particularly striking is that the move towards strengthening patient voice (something that some had argued has emerged from a decade of neo-liberal inspired public sector reform) has largely ignored simultaneous developments on the web that were turning most other service industries upside down.

The NHS made little attempt to harness the new technologies that were being used to great effect in banking, retail, travel, telecoms and so on. Patient Opinion came about soon after the creation of many other feedback and user generated websites. For example (the online hotel comparison site) was created in February 2000, eBay the user-based online marketplace was founded in October 1998 and Wikepedia the user-created encyclopaedia in 2001. Hodgkin could be seen as harnessing the new techniques and processes from other areas into the healthcare sector.

There was also a wider trend - the shift in the developed world from the industrial information economy of the past to a networked information economy of the present. Instead of having to rely on enormous capital to publish materials for the mass audience, materials such video clips and blogs in the new networked information economy could be uploaded onto the web cheaply and to cater for a minority audience (Chris Anderson, for example, describes how twenty per cent of Amazon’s profits now come from books with under a hundred sales per year ). Hodgkin saw the potential for the creation of a conversational space for patients to discuss the reputation of their hospitals online which could be broken down into ‘micro-conversations’ about specific hospitals.

These exchanges would be between patients, and also between patients and the NHS. Hodgkin aimed to move individual patient comments into a space where they could be built up into public, transparent hospital reputations. By collecting a number of comments in one place, subjectivity and bias would be removed. This could also help to drive quality. He intended this feedback to be used alongside the systematic data generated by such means as the Healthcare Commission and National Patient Surveys. Patient Opinion was launched as a four month pilot across South Yorkshire in September 2005 and was initially funded by the Department of Health and South Yorkshire Strategic Health Authority with the aim of eventually becoming a national social enterprise funded by Primary Care Trusts and hospitals (with any surplus being directed back to the NHS and not to shareholders or the Government).

Hodgkin credits his ability to secure funding from these bodies to the contacts that he had built up during his career (he had worked in the Strategic Health Authority and had a strong record as a local GP in the area with the business experience that that entailed). The partnership with Mike Farrar in the Strategic Health Authority was an important one. Farrar claims that Hodgkin’s success was down to a number of factors. Not only did he come to the Authority with a good idea, but he also had a clear model for delivery, which appeared viable, which, from Farrar’s experience, was unusual. This coupled with the fact that Hodgkin’s idea had relevance for the policy agenda of the time (i.e. the rise of the choice agenda and empowering patients as consumers), meant that it was something the Strategic Health Authority felt was worth pursuing. Farrar claims it was a risk, but one that was worth taking given the strong delivery plan that Hodgkin was presenting. The procurement process was lengthy (often a feature of social enterprises’ relationship with funding bodies) and it meant that the team had to put their Intellectual Property at risk. When they originally put their idea forward Patient Opinion had not been aware that they would have to be part of a tendering process at all and so when they discovered it would be they were protective of their intellectual property in case other organisations were able to access it.

Farrar claims the tendering process was an important as it mitigated some of the risks associated with awarding public money i.e. ensuring that others were not able to provide a similar service for less and ensuring that the money was being used in the interests of the people of South Yorkshire. The Health Authority created a specification that fit with what Hodgkin was able to deliver and put it out to tender. In this case no other organisation tendered, but in hindsight Hodgkin believes that the process meant that when they did win it, it strengthened their business case as they were contracted to provide services, not just fund them. This meant that they could apply VAT from the start allowing the cash flow to be as like a business as possible. It also meant that the amount awarded was significant enough to get the service up and running robustly from the start rather than having to divert time and energy to raising funding from many different funding bodies.

Patient Opinion was set up as an online service which offered patients the opportunity to report their experiences and rate the hospital where they had been treated on everything from the standard of medical care and nursing care to punctuality, cleanliness and parking. Patients are also asked for ‘stories’ of their experiences. The website and many of the innovative features of Patient Opinion were created in collaboration with the software developers Headshift ( who had a background in developing sites in health and social care, education and the public sector. There was a strong emphasis placed on not just creating another token patient website. Instead they worked along the ‘smarter, simpler, social’ approach using a range of social software tools and techniques to create user generated reputations for individual departments and organisations.

Hodgkin himself identified the importance of choosing Headshift in preference to some of the other developers. The close fit of ideas was crucial to their success. They are both, in their own words '…passionate about empowering people to tell their own stories; we both believe in technology as an enabler, rather than a 'solution' in search of a problem; and we both share a genuine commitment to online community building and finding alternative business and communication models'. After the initial pilot Primary Care Trusts and hospitals were approached to subscribe to and fund the site to make it a not-for-profit social enterprise. This was demanded by users, who insisted that they would not trust any site funded by the NHS and who did not want a profit made from their input. There was a deliberate effort not to accept a few large grants, but instead to seek subscriptions to ensure financial independence. Originally they had planned to provide reports but moved to a subscription model, which meant that money was paid up front – improving cash flow. Subscribers are able to direct comments about any particular service to the relevant manager in an email. Those who subscribe are also allowed to respond to any comments posted and patients can post a hundred word response to any comment posted by a Primary Care Trust or hospital.

There are plans for local MPs in the North West to be able to post comments. The sites content is freely available in order to promote the widest possible use by patients. Subscribers pay for added search and convenience services not the data itself. Patient Opinion was intended to put pressure on Primary Care Trusts and Practice Based Commissioning consortia to use Patient Opinion data to inform commissioning discussions and service redesign. There was significant anxiety amongst trusts about this change in Patient Opinion’s role, as it meant their reputations would shift into the public, visible domain. As one Director of Nursing said: 'Why should we pay Patient Opinion to provide people with a site where they can publicly slag off our services?' This is a challenge that Patient Opinion anticipated, given the difference between the relationship the NHS had historically with its users and the relationship commercial organisations had i.e. an understanding of the need to interact with negative feedback online.

This was an intended challenge, however, and one that gave impetus to the process of innovation both to encourage organisations to respond and to make improvements. The organisations had to respond to the feedback as it was visible for all to see. They also had to respond in a manner that was relevant and conversational enough to engage web users. Hodgkin claimed that in time this was something that those trusts who subscribed came to value. One Manager at a subscribing trust after six months observed: 'The positive comments are nice to get. But it’s the critical ones that are really useful because they are the ones that make staff sit up and take notice because they know that everyone can see them. That’s how Patient Opinion drives change for us and why it is more useful that most of the patient-derived data that we hold already'.

What were the incentives, mechanisms and processes through which the innovation was taken-up, replicated, scaled up? How was the revised original idea changed and adapted in the process as it became more widely accepted? It was difficult to know at the start of the pilot how many posts were going to be uploaded. Like most web-based businesses, Patient Opinion was designed to scale and a target was set to have several thousand opinions posted per week by 2009. The number of posts are important; without them the ‘micro-conversations’ would not take place and the detail required by subscribers would not be available.

Increasing the number of posts and scaling the website up has, by Hodgkin’s own admission, been a steep learning curve and not straightforward. To drive more postings Patient Opinion have been working directly with general practices. By recruiting a few practices in each area they were able to generate twenty five to thirty postings per week from patients who have just had care at hospital. This in turn meant that postings were much more focused. As Hodgkin says on one of his blogs: '1,000 postings per year about one hospital is much more use to everybody (patients, GPs and hospitals) than three postings about each of the three hundred hospitals in England. Less glamorous than an article in the Mirror but just as effective'.

Use of the site is increasing - currently more than 2000 people have posted comments or ranked a service and in June 2006, 65,000 pages were viewed on Patient Opinion. A series of regional and national publicity campaigns have also been organised to raise awareness for example including articles in health magazines such as Heart UK Digest. This raises a question about how easy or difficult it is to engage patients in enterprises such as this. Is it merely catering for and reaching those with internet skills and the time and motivation to express themselves? Can it be said to be truly inclusive? The nature of the postings is also important. It was difficult to anticipate the nature of the comments that would be posted. The website does not attempt to be representative, rather to stimulate change and typically around fifty per cent of postings are positive, twenty five per cent are critical and the rest are mixed. It would seem that users need to be at the extremes of patient care to be motivated to post an opinion. There have been processes put in place to address negative postings which identify specific members of staff. These are verified with the poster, they are directed to make a formal complaint if they wish to and the complaint is forwarded to the trust but not published. Users are also encouraged to reformulate their opinion in a constructive way i.e. ‘what could have gone better?'

One of Hodgkin’s aims in establishing the business model of Patient Opinion was to deliberately subject it to market signals (i.e. the reality of whether trusts will subscribe) to ensure that services represented value for money and to be in touch with what customers want. This was based on Hodgkin’s own experiences of witnessing social innovations fail because they had not planned funding sufficiently beyond the first year or two and from his own direct experience of running a charity. Patient Opinion only succeeds if Trusts are willing to buy its services.

Evaluation and success.
In many ways Patient Opinion can be seen as what Clayton Christensen would call a catalytic innovation. He adds to the classic models of innovation,sustaining innovations (for example, a better way to make widgets) and disruptive innovations (something that makes widgets obsolete) by introducing the theory of catalytic innovations (innovations that put widgets to completely new uses in order to meet a social need).

Catalytic innovations create social change through scaling and replication and have the mechanisms and resources to solve problems as an intrinsic part of them. In Patient Opinion’s case the web-based structure and funding arrangements means that it has the potential to increase in size and become a UK wide organisation, albeit with the risks that that would involve (not least in ensuring there are enough patients posting to make it viable).

Innovations that Christensen terms catalytic also meet a need that is either over served (because the service offered is more complex that people want) or that is not served at all. In comparison to current forms of feedback, Patient Opinion is less complex and some might argue more effective in its ability to effect improvements to services. Catalytic innovations also offer ‘good enough’ services that may be of lower quality but that are more accessible than other means. Patient Opinion certainly offers cheaper, more universal and quicker feedback access than more traditional feedback mechanisms, although by its very nature it is less objective. This could be argued to be ‘good enough’ for what it aims to achieve. Catalytic innovations also generate resources in ways that are unavailable or unattractive to incumbents and are often ignored or disparaged by existing players. For profit companies (such as Dr Foster’s intelligence) are certainly sceptical about the freedom that the posted comments give to patients and the inherent risks that this poses i.e. being sued. Patient Opinion does make its core customers uncomfortable but because of its funding arrangements has more freedom than for-profits. Largely due to the not for profit nature of the way Patient Opinion is funded, it has been able to use income and opportunities that might be unattractive to those from the commercial or public sectors and create a new solution to a social need, albeit with the considerable risks and challenges that this involves.

Influence and effects
It would be difficult to see how the new Choice website recently announced by Health Secretary Patricia Hewitt was not influenced at least in part by the innovation of Patient Opinion. The new Choice website aims to centralise all information on all hospitals and treatment centres to empower patients to make more informed choices on their healthcare. The website is expected to be up and running in summer 2007 and will help people assess their own health risks, enable them to join discussion groups with people with the same condition and share information on services. It will also provide comparative information on dentists and GPs and allow people to see what patient survey and data has been collected locally. The site will also link with sites such as NHS Direct online. Interestingly Patient Opinion was not asked to tender. It is, in many ways, too early to say why this might have been but time will tell whether this could have been something that could have been integrated effectively within the website as a good example of public services and social enterprise working together to empower patients.

The website raises questions about other innovations along the same lines for the public sector. Could there be a similar innovation for transport, schools or care homes for example? A recent similar innovation in the online world that connects public services with consumers and citizens is Neighbourhood Fix It, a site that allows users to report a problem (such as flytipping, broken paving stones etc.) in their local area and email the relevant council. Once the issue has been dealt with the site is updated, allowing councils to have a real-time record of a council’s environmental performance. Could this be the beginning of a trend towards public services opting into the digital revolution?

The involvement of government
The four month trial phase was funded by the Department of Health and South Yorkshire Strategic Health Authority and this, as with most social innovations, was an important enabler to launching the site. The site fits well into the government’s stated aim at the time for ‘wider patient involvement...[for a] better quality of care’. It was inherent in Patient Opinion’s stated aims that it remains independent and not for profit, therefore, after its establishment it did not require government assistance.

Patient Opinion has leant that:

• Having independent funding i.e. in this case non NHS funding, can allow innovations the chance to have a dialogue with the public sector that would otherwise be tempered by the funding relationship

• Funding or backing an innovation in the early stages is a risk, but considering the policy agenda in which the innovation is working can be beneficial in making the decision to support it

• There are inherent challenges in scaling up a social innovation which need to be considered e.g. ensuring there is a mechanism in place for increasing and sustaining the number of users posting opinions

• It is too early to judge the implication of the new ‘Choice’ website on innovations such as Patient Opinion, but there is a need to consider how existing innovations can be integrated into public services

• Might it have benefited from an alliance with other, larger organisations e.g. the Citizens Advice Bureau?