Consumers are well ahead of the health service in using the web, with patient opinion leaders emerging in many disease areas. Should the NHS engage the public in online dialogue, asks Daloni Carlisle

NHS London has a polyclinic on Second Life; NHS Connecting for Health and NHS Choices have their videos on YouTube. The online creativity and user collaboration that comprise “web 2.0” are not passing the NHS by - but do people really look to institutions such as the NHS for information on web 2.0?

There’s a line of thought that says very definitely no. Web 2.0 as applied to health and healthcare - sometimes called health 2.0 - is all about users. It is user generated content, networks, avatars in virtual realities, blogs, patient-held electronic records, simple syndication, wikis and the like. It is antipathetic to institutional presence.

The other line of thought says equally definitely yes. The NHS is a trusted brand that should be providing information in the arenas and the formats people like and use. Adding NHS knowledge and expertise - whether clinical or in data presentation - can only strengthen health 2.0 offerings.

The argument is more than academic. There is influence and professional territory at stake. “The impact of web 2.0 on the balance of power and knowledge between patient and professional is enormously significant,” said the NHS Confederation in its report on disruptive technologies last month. Consumers of healthcare can now access, discuss, validate, share and exchange knowledge and use it not only to support one another but also to lobby for change.

“Consumers are well ahead of other health stakeholders in adopting social media in health,” says Jane Sarasohn-Kahn of the think tank THINK-Health and author of a report on health 2.0. “People with chronic conditions are sharing their stories with each other, not just for emotional support, but for the clinical knowledge they gain in an online community.”

The£80m question

While doctors and researchers are using social networking, it is consumers who are ahead of the curve, Ms Sarasohn-Kahn says. “Patient opinion leaders have emerged in many disease areas. They will become a key influence on other consumers and, increasingly, the organisations that serve them.”

The NHS Confederation agrees and suggests the idea of “prosumers”: consumers who are so expert that companies use them as a resource for innovative product development. The concept has not yet taken off in health but has potential, particularly for commissioners.

And then there is money. Yesterday the Department of Health was expected to announce the preferred bidder for the£80m NHS Choices website contract. It is a plum project, even more important now health minister Lord Darzi has made clear in his review of the NHS that he sees the website as the natural home for public-facing information on quality that supports choice. It is the NHS’s biggest presence on the internet.

NHS Choices is currently run by Dr Foster Intelligence, a joint NHS/private venture that has set out strategic plans that put NHS Choices clearly into web 2.0 territory.

It provides the information people need to make choices - infection rates, opening hours, car parking charges and, as of last week, mortality rates for some treatments - supplemented by a useful but traditional online information resource. In future, says its April 2008 strategy, it will offer a personalised service, tailored to individual needs. It is already beginning to dip its toe into the social networking world by offering patient forums and is launching some blogs.

“Going forward it is all about having conversations, making sure we take feedback and getting user generated content on there,” says NHS Choices programme director Gary Ashby. “Although we are a source of core information, we want people to contribute to it: the public, clinicians, GPs.”

Mr Ashby is in the “NHS equals trust” camp. “Despite everything that’s said about it, people are quite happy to be part of the NHS,” he says.

He recognises that NHS Choices is not top of the health web pops, pulling in just over two million people a month. Boots the Chemist is the most used healthcare website in the UK, but its site is linked to retail.

The NHS link can bring something extra, he argues. “We can offer something else because we are part of the NHS. Should we at times have a discussion with an NHS clinician as moderator? We have to be really careful here. It is not about us interfering in that conversation [between users], but being there to guide it.”

Matter of trust

James Munro of patientopinion.co.uk could not disagree more. This small site (there are only six people on the staff compared with more than 100 at NHS Choices) draws more than half a million people a month, who compare their hospital experiences.

People write about their real-life experiences in a way that can be searched. It is paid for by subscriptions from hospitals, primary care trusts and MPs who in return get emails alerting them to new and relevant content about their organisation, area or specialty. NHS organisations can post replies.

Dr Munro explains his objections to NHS Choices expanding into health 2.0. “We feel that where the government is the right organisation to do something is in providing information about services, such as post-operative infection rates,” he says. “But where it comes to citizen generated data, there are a few things that should make us pause.”

Chief among these is trust and independence: who is handling the feedback from user generated content? Dr Munro says: “When it comes to professionals, the government has a tendency to use this data for performance management and even for financial reward. There is a risk that information people have donated freely becomes management information that is used to discipline the workforce.”

Sean Riddell, managing director of GP clinical systems provider EMIS, is also uneasy. EMIS is a company that runs patient.co.uk (four million users a month) and which allows patients to link into medical references used by their clinicians, starting with a basic patient information leaflet but going into as much depth as a patient likes. Within the site is a patient experience section, a social network site that alone is getting 500,000 visits a month.

“Web 2.0 is a label,” says Mr Riddell. “What underlies it is world views according to patients.” And that’s where centralised NHS-led initiatives will come a cropper.

“Political masters tend to view these things in terms of their website being the one for every healthcare need. That’s wrong. It should be generating new knowledge on a ‘do once and use many [times]’ basis.”

In other words, syndicating and sharing freely and using the NHS brand as a kitemark. Gary Ashby agrees and indicates that NHS Choices is indeed pursuing this idea.

But he points out that the inherent nature of web developments is their unpredictability. “Ultimately, if we think we are going to be able to plan and scheme how people are going to use NHS Choices, we will be wrong. It will not happen that way. We will try a number of things and find out what works and be flexible.”

For the NHS not to have a presence is not an option, however. “We have to be there offering an option,” he insists. And it will be up to consumers whether they take this up.