Feature

Virtually organised

With the demise of the public meeting, where can health activists get their political debate now? Head for an online forum instead, says Martin Rathfelder

These days, fewer people seem prepared to join organisations or come to public meetings, so many organisations are attempting to use the Internet as a means of organisation. But how effective are they?

The conventional website is like a magazine, typically with a front page, links to layers of other pages, and little interactivity. The only person who can add material is the webmaster, who has to produce pages in HTML (not terribly difficult, as modern software takes much of the drudgery out of the process). The main practical difference from printed material is that links can take the browser directly to information provided by other organisations.

More ambitious sites permit users to add their own comments, either directly or via a moderator. This idea is as old as the Internet. Newsgroups were very important in the early days of the web, but they declined as the number of users increased, because the useful content was overwhelmed by a tide of pornography, spam and obsession. Many sites now insist on users registering themselves in some way and normally have a moderator to remove unwanted postings. This does mean that you have to remember a lot of passwords, but offers some protection from rubbish.

Perhaps the most widely used interactive health website in the UK is that of the British Medical Journal (www.bmj.com). This esteemed journal is unusual in being available free to all on the web, and in fact there is quite a lot more to read on the website than in the printed version. ‘Rapid responses’ to articles are encouraged, although moderated.

healthmatters has its own online forum for debate on a range of topical health policy issues (www.healthmatters.org.uk/debate), but despite efforts by the editor, the author, and one or two keen correspondents, the debate has not really taken off. Perhaps not enough readers know about it. And, of course, most people are not so confident (or big headed) that they want to post their views for all to see.

The website of the Health Voice Network (www.healthvoice-uk.net) aims ‘to enable more people to have more of a say in planning and improving services that affect their health’. Most of the 1,200 registered users are staff who work in health and other services, and its main use is for mutual support and sharing of ideas about how things can be done. The users are mostly from grass roots projects, and the site permits them to enter details under various headings. Once registered you can get regular emails telling you what has been added to the site which corresponds with your keywords – including details of people in your area or with similar interests.

The Commission for Public and Patient Involvement in Health is being even more ambitious. Their ‘knowledge management system’ is intended to support the work of the 562 patient and public involvement forums and is supported by a substantial organisation. Because of CPPIH’s obsession with secrecy, their staff have names like Media Relations Officer 1 and users are allocated names like Central Manchester PCT PPI Forum Member 1 (which I admit is me), lending an aura of Newspeak to the whole site. It is intended to have collections of resources on all sorts of topics – diseases, treatments, health service structures and so on. At present there are few users, because CPPIH is very cautious about letting people loose on it, but it is intended to be open to the public eventually. I will be surprised if it does not collapse if 5000 people start using it.

Information overload

Even if the technology does not physically collapse, the development of a big site brings with it problems of information overload. Health is a complex business and it is difficult to organise information in a way which ensures that only relevant material is presented. We already have the same kind of problem with email. Even when I have deleted all the offers to enlarge my vital organs and make me rich I am still left with more messages, which someone else thinks I should be interested in, than I can possibly cope with.

Health activists tend to be crusaders. Some of their crusades are lonely and some misguided. Some of the crusaders are clearly mad, whether they know it or not. A system open to the public must somehow devise a way to filter information, so that which is wrong is removed and that which is important becomes prominent.

But, equally importantly, it must be possible to challenge orthodoxy. An idea which is commonly accepted may not be right. There has to be debate. It is not clear, for example, whether the CPPIH website will be able to tolerate people who dissent either from scientific orthodoxy or from government policy.We may need to permit people to post messages we are uncomfortable with (like the woman who told me this week that asylum seekers were given preferential treatment at the family planning clinic because they had an appointment with an interpreter, while she just had to wait her turn). An official system, where someone is responsible and accountable, is subject to pressure to be politically correct.

A very effective way to evaluate information sources is actually public opinion. Google is the most effective way to organise information I have yet seen, because it ranks web sites according to the links they attract. I suspect that encouraging every patient forum and self-help group for every rare disease to construct their own website would actually be a very efficient way to use the Internet to share information and experience.