Sharon,
Firstly, thanks for picking up on this; we need people to discuss this
stuff at a level of detail. Maybe I'm completely off beam - maybe I'm not.
The only way to find out is talk about it :-)
> It should be
>>>noted that the size of the list has remained constant over the past few
>>>months in spite of the growth of the internet.
>
>It should be noted that the "internet" could be looked at as an ENTIRE pie.
>A 'list' - any list - is only one tiny slice of that pie.
>[snip]
> It simply is not possible for any list
>such as Parkinson's to grow at the same rate as the "internet."
What I would like to do is understand:
- what the Parkinson's community on the Internet could eventually
become
- how we are doing in that journey, and what we need to plan for
There is a generally accepted figure for the incidence of Parkinson's - it
varies a bit from country to country, and a lot by age group, but give say
a normal population of 60 Million, you might expect to find say 120,000
people with PD. (I don't know the exact figures so please forgive any
mistake!).
You might say "but the people who are most likely to have PD (the elderly)
aren't so likely to be on the Internet". This is true. However, I also make
the assumption that for every 1 person with PD, there are 1, 2, 3, or more
people who are affected. These people are probably in the demographic
groups which are on the Internet.
For example:
- A teenager joins the Internet's PD community because Granny has PD
- A nurse joins the Internet's PD community because a patient has PD
- A computer programmer joins because his wife is a Young onset PD
Now, at the moment, these people aren't terribly well served by a large,
monolithic, PD list. They might not have the time/commitment/interest to
join a large list with lots of messages about everything to do with PD. But
they might have the time to join a smaller list about PD research, or PD
lifestyle, etc.
I believe that we should not ignore the needs of these people - they are
just as much part of the community as we are. In fact, if we can support
the nurse, we perhaps benefit 10 Parkinsonians - but don't forget, the
nurse is very busy and is probably borrowing her son's computer - so we
need an area where she can get what she needs, and not waste her time.
These people aren't on the list right now because it isn't right for them.
To some extent the audience who read this message have self-selected
themselves to disagree with what I am saying - by definition, you like the
way things are.
>I have talked to many
>>>people who have been so overwhelmed by the volume that they have left
>>>the list.
>
>People will leave when there is nothing of interest to them. If the
>information is there - wheat amongst the chaff - people won't leave. This
>list is loaded with people willing to share information.
I disagree. I think people will leave if the signal to noise ratio is too
low. Wade through 500 messages for the one item of interest? Don't think so.
Two examples:
- my Dad won't join because he doesn't want 50 mails a day. However,
he does know a lot about PD, is still very active in the local
branch, and has a lot to contribute.
- a young-onset sufferer I know has bailed out of this list and onto
PARKLISTE and PDUK, because PARKINSN is just too large.
Question: these are just two anecdotes I have. I have no real statistics.
But be definition, we aren't going to know when people don't like our list
- they just leave, silently, never to been seen again. I think that's a
pity - and a limit on the number of people who can benefit from our
activities.
>>This is what can happen to Internet discussion forums:
>. Some anger vented
>> between people who have different ideas about what is and isn't
>> "on topic".
>
>A small percentage of those people are always angry about something. Lets
>be grateful some of those folks' join *Internet discussion forums.* At
>least during the time they're at the computer keys or "On line" they aren't
>behind the wheel of a car or abusing children, animals or the SO.
Well, I guess some people are always angry, but the people I was talking
about are normal, well adjusted people, who feel strongly about something.
I don't think people who speak their mind in Internet discussion forums
also do other, much worse things, in real life!
>>I generally float this suggestion everytime people concerned about the
>>amount of traffic on the list..... and I get a lot of emotion back about
>>"we can't split the main list".
>>
>>Well, I don't think its something we can afford to get emotional about. IF
>>WE DON'T DO SOMETHING TO SOLVE THE STRUCTURAL PROBLEM THE
>
>What - exactly - IS the "structural problem?" What - exactly - IS your
>particular interest?
The structural problem is the PD community is at the moment, "All or
nothing" which turns a lot of people off. I would like to structure things
so those people who wanted "All" could chose to have "All", and those who
want to focus on an area, can.
My interest - covered in a personal mail to you.
>Excuse me BUT I don't think the above "technical issues" ... "like where to
>host the lists" should be left aside. What country do you suggest "host the
>lists?" I care.
I think we should leave the "technical issues" aside while we discuss what
we should do as a community. The community issues are hard to solve, in
comparison to finding a listserver.
I don't think which country they are hosted in matters - but I would like
to see responsibility distributed around, so as not to impose too much on
one individual/company's generosity. Also, I very much prefer forums which
are International in nature.
>what do
>>people think? Would you support these lists? What to do? Do you care?
>>
>
>Yes, I care.
Cool. Thankyou for taking the time to discuss this.
>What country code is 44?
UK.
Final point: I am not talking about "killing PARKINSN" or anything. Just
picking up identifiable, high-traffic, distinct topics, and shifting them
to another list. PARKINSN will probably halve in traffic for a while, and
then slowly grow, until we find some more topics to split off into other
lists.
Simon
--------- My opinions are my own, NIP's opinions are theirs ----------
Simon J. Coles Email: [log in to unmask]
New Information Paradigms Work Phone: +44 1344 778783
http://www.nipltd.com/ Work Fax: +44 1344 772510
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