Heroes Not Zombies

Two of the types of tools which are mentioned when people talk about the idea of “Health 2.0” are social networks and wikis.
Social networking sites are springing up fast and they all allow people suffering from the same disease to connect with each other for information sharing, telling their stories, giving each other emotional support and passing on tips and techniques which they’ve found helpful.
Here are three to explore – first up there’s Daily Strength. This site has a strong focus on interpersonal support. It allows people to tell their stories and to be supported by others in communities which grow up around groups of people with shared diagnoses. Next up is Medix. This looks a very similar offering. Again the focus is on patient-generated content – the sharing of stories and experiences. The third site I’ve stumbled across is called Trusera. Again, it’s a site for sharing stories and connecting up with others who might have had similar problems to yourself. This third site seems more minimalist to me. I’m not sure if that’s because it offers less “tools” or if it’s just a simpler design. I wouldn’t know where to start if I were looking to connect with someone else who shared a similar illness to me, but then I remembered the “old” web2.0 addage – “it’s not OR, it’s AND”. One of the great things about the net is how you can grow connections in pretty much any direction you like. I reckon if I was looking for support I’d register with more than one of these services (they are all free), and I’d see which community was the best “fit” for me.

Now let’s look at three services of a different type. You know about wikipedia, huh? It’s the biggest online user-generated content encyclopaedia ever! It’s based on a very simple technology known as a wiki. Anyone can use this technology to create their own special interest information source and that’s really at the heart of sites which are seeking to place themselves as reliable, trustworthy sources of health information. The trouble with health information is that so much of it is NOT trustworthy. There are a lot of people out there trying to sell you stuff. As a health professional I tend to look for information through specialist medical libraries but these sites I’m about to describe are really not for people like me. They’re for people who have no specialist knowledge who want to understand better what’s happening to them. Well, almost! First up is wikidoc. Wikidoc describes itself as a “global medical textbook”. It looks like it is pitched at health professionals. However, if you look on the little menu at the top left of the welcome page you’ll find an interesting item called wikipatient. Click it and you here. This is like a huge collection of patient information leaflets. All the pages on this site are edited by doctors, so the information isn’t the kind of free for all you’ll find on the support pages. It’s about information really. In fact this section has a byline – “What Was My Doctor Talking About? Watch world experts explain procedures and treatments in language that you can understand”. Askdrwiki takes a slightly different approach. It styles itself as a place “where you can publish your review articles, clinical notes, pearls, and medical images on the site. Using a wiki anyone with a medical background can contribute or edit medical articles.” This is the same kind of direct pitch to doctors which wikidoc has. It doesn’t have the section which is so explicitly written for patients however. The third site I’d like to mention hasn’t quite gone live yet. It’s Medpedia. This doesn’t look so wiki-like. But the idea is very similar. ” Medpedia is the collaborative project to collect the best information about health, medicine and the body and make it freely available worldwide” The splash page gives you an idea of what the final site will look like and invites doctors to apply to become contributors and editors. They say they hope to launch at the end of 2008. Harvard, Stanford and Michigan Medical Schools are involved, as is UC Berkeley School of Public Health. The preview pages look more like a traditional medical textbook to me, but clearly they are an attractively designed wiki.

I think it’s great to see these resources springing up and although it could be argued that there are too many of them already, I don’t agree. I don’t use only once source for information. I don’t use only one search engine. I think both of these tools can work well together. I think I’d develop a strategy of checking out the information wikis to try and understand the disease/my body/what’s going on – clarify and understand better the diagnosis and the prognosis. And then I’d register with a couple of the social networks, find out what others have experienced and hook up with people who could understand what I was experiencing for support.

But, maybe you could tell me. I’d be really interested to hear from anyone who has used any of these resources and hear what was good or bad about them. Or maybe you’ve already got some experience of other sites you’d like to share? Do tell!