According to an article in The Economist the phenomenon of user generated content has infected healthcare with millions of people contributing information about healthcare topics ranging from avian flu to acupuncture and infertility.
According to market research firm Jupiter over 20% of American internet users have created some sort of health-related content.
The Economist argues that this explosion is driven in part by the broader internet trend of more people with broadband access and easier to use software that makes content creation much simpler. But it also argues, and our experience of running the Kidney Patient Guide supports this, that for those people with chronic or rare conditions it can be a fantastic way of getting information and support from other people in similar situations.
In some ways The Economist believes this boom in health care information is strange given that our health is generally regarded as a private matter and often not even discussed with other families and friends. This is one reason why the web is such an excellent forum - the user can decide how much or how little of their life and condition they want to reveal, and it is often easier to talk to strangers than it is to those we are close to. However, as the article points out it is important that users realise how permanent information can be online.
Another concern raised in the article is the issue of accuracy.
The article alleges that a lot of the user generated content is accurate and that according to a study in the British Medical Journal in 2004, a panel of neurology specialists judged that only 6% of information posted in the epilepsy-support group of the BrainTalk website was factually wrong and where there are a significant number of contributors misinformation is often quickly corrected.
As website managers we can’t be complacent about information as sensitive and important to people’s lives.
There must be safeguards and clear guidance for users. In this field it is particularly important to establish trust and credibility with your users. If content is user generated it should be evident to all that this is the case and there should be clear guidelines about the moderation policy and what are considered acceptable contributions. As with the group mentioned in the Economist article, in our experience with the Kidney Patient Guide the group of volunteer moderators and site users police the guidelines very actively themselves and quickly remove or inform us of any postings that breach these guidelines. A privacy policy and guidelines on how to safeguard your privacy online is also essential if you do solicit user contributions.
Transparency isn’t just for user-generated content.
For any health information the editorial policy should be made evident to users. From other research we have done for medical charities there are a number of factors that influence how users perceive your site.
For example, is your site or content sponsored; do you accept advertising; how long ago was the content updated and by who?
All this should be spelled out in your editorial policy, while displaying the last updated / reviewed date and author details on every content piece assists users to establish your credibility. Sites can also consider accreditation by an organisation devoted to upholding standards of health information such as the Health on the Net Foundation who accredit sites via their HONCode.
With these safeguards in place, the internet can provide a highly effective medium for people to find information and support for their healthcare issues.
Economist article: http://www.economist.com/printedition/displaystory.cfm?story_id=9719054
