I normally post on the Parkinson's forum. There's a group of us there interested in doing science, not just reporting it. I don't like the name, but "citizen scientists" seems to be the name gaining the most external usage for people active in this area.

We realize that the things that hold us back the most, such as web site construction, statistical analysis and data visualization, aren't unique to PD. So, posting on those issues to the PD forum is not appropriate. And, anyway, misses out on a huge amount of external expertise.

What I think we need is a virtual water cooler. Next to this we could chat about what we know and what we need to know.

Does anyone wish to collaborate in this area?

John

Web site construction, statistical analysis and data visualization is way over my head..LOL
I hope someone has some ideas on those to chat with you about..

Perhaps consider setting up a discussion group on Google Groups, no worries about web design, or administerting a regular forum and such.

Here's a problem that probably citizen scientists in many different areas would like advice on.

Using minimal technology how can you measure the size of liposomes?

There's plenty on the web about how to make liposomes using ultra sonic cleaning machines, but I've found nothing about how to test at home that you've succeeded.

John

A few things to consider...

We'd be happy to setup a forum for this discussion here, not a problem.

But I'd also encourage folks to check out what an "e-patient" is, because it sounds similar. E-patients is a broader term that captures the idea that our health care should be an equal partnership between us and our care providers. An individual now can gain as much specialized knowledge in their disease or condition as many doctors (and even many specialists!). So there's no reason a patient can't become an active partner in their own care (instead of a passive participant).

The Society for Participatory Medicine is one advocacy non-profit I'm involved in that is helping to change the conversation and supports e-patients in all their different guises. Some like to speak on this topic, others like to delve into the research and propose & conduct their own studies, still others are just learning where they fit in in understanding and bettering their condition.

If this sounds interesting to you, check out more info on our website at http://participatorymedicine.org/

If you'd like a forum setup for this purpose here, just let me know and I'll get it done.

Best,
DocJohn