Dear computer geeks :) and other list members,
Thanks for all the replies on Web searching - these were all good
suggestions. One of my concerns was for those new to the Internet and the
newly diagnosed, who are looking for PD information on the Web - and what
they are likely to find and also not find. The Web has been described as
a library with all the books thrown randomly on the floor. Are there any
ways we can help make the search for PD Information less random?
Frans van Dunien said it best - "And then there are the jewels, the
resources like this list, Janet's site, John Cottingham's etc. Operated
by volunteers without funding. And somehow these are the best sites by a
long shot. So how do we tell the newcomers where to start and what they
can ignore..."
As part of my job, I teach undergraduate students how to do research on
the Internet - at one end are returning adult students, some of whom have
never used a computer before. At the other are the recent H.S. grads who
think they know everything about the Net. I've observed lately that even
the 18 year olds are complaining about all the commercial sites - "How do
I get to the information?" I've even had a few ask for a book instead!!!
Many also give up after the 2nd or 3rd result screen, if they don't find
what they want. Or they just use anything they happen to find immediately
- without knowing where it's coming from or what it's biases may be. Many
just get lost after drifting from one link to another.
Another Parkinson's example - look under the Yahoo subject directory for
Parkinson's Disease - a very likely beginning search . There are some
good sites, but many other good ones are missing. Then there are links to
sites like one called the "Parkinson's Information Web Site" - which
sounds like a good place to start. It turns out to be another drug
company site - this one is Somerset, makers of Eldepryl, which includes a
page on why Eldepryl is better than the generic brands (Not what my
doctor told me). Another link is to a site last updated in 1997.
So what can we do? From all the replies I've summarized some ideas:
- Could our list web site owners provide more links to other
"PWP-friendly"
sites, and those that they have visited themselves and know provide
accurate, up-to-date information. Could you also include links labeled
something like "Good sites for the newly diagnosed."
- William Parrett offered some hints for increasing the ranking of web
sites on search engines. William, could people contact you for assistance
if needed to adjust their meta-tags?
- Volunteers could check the directories and meta-sites that have a PD
category, and note which of our favorite sites are missing, and ask the
site owners to submit their pages for inclusion.
- Each of the PD organization sites offers unique and valuable
information. Could they link to each other? For example, the NPF site
has some good information on Young Onset PD, and there is additional info
on the APDA Young Onset I&R site. Why not link to one another? We need
all the information we can find. I also noticed yesterday on the NPF
site there is a new Parkinson's Ring link - but only 4 sites are on it so
far. It doesn't say where this Ring originated - but this could be a good
tool if there are some guidelines for which links are included.
Any other ideas?
Linda
