First, thanks to all our new volunteers for the outstanding efforts!
About the wiki and its relation to the web forum. Some brief history/prehistory might be helpful.
Our group got started when a few of us who'd discovered our APOE status met via 23andMe's discussion forums in 2012. It soon became clear that the software 23andMe was using for their forums was extremely limited, and that it would be good to form a separate group. I pleaded with 23andMe to improve their discussion forrums (one couldn't even get a list of one's own postings!), but they refused.
I noted, in one of our mammoth threads on 23andMe, the need to move elsewhere, and immediately the people from SNPedia jumped in and offered to host our community on their wiki. So I created the material here:
https://www.snpedia.com/index.php/APOE4_Community
So our group, at the very beginning, was nothing BUT a wiki. That historical residue might explain why some people (mostly me, at least until recently), so often talk about putting stuff on the wiki.
In any event, we quickly realized that we needed our own discussion forum, domain name, etc., so Julie and SkiBike and others got that going, and we – or at least I – had a vision for the whole of our web presence that had two components: 1) a place to talk and hash things out (the forum), combined with 2) a place for a repository of reasonably hash-out ideas – though always modifiable (the wiki). So I built up a rough framework based on what I put on the wiki at SNPedia – incomplete to be sure! – and assumed people would add to it. But people didn't start contributing nearly as quickly, or as much, as I thought they would. Partly this might have been because the software running the wiki (the same software Wikipedia uses) is not hugely user-friendly. And partly it's because people started using "sticky threads" in the forum for the "repository" function.
Not sure where to go from here with the wiki. The Board (which I'm not on) has some concerns as Julie noted. (Also, everyone will be swamped until after San Diego.) Sticky threads might be easiest. Stavia's primer is a "repository" item, not a discussion item, and it's doing fine on the forum!
Here's the original thread on 23andMe. I see the date – 2012! – wow. We've been at this for a long time.
https://www.23andme.com/you/community/thread/15952/
(Non-23andMe customers might not be able to read this. Though one used to be able to create an account for free for purposes of forum participation.)
Note, although it's not relevant to the matter of "wiki vs. forum", for the sake of completeness: SkiBike is the one who created the original website. It was an immense amount of work and he did an incredible job with both the technical aspects and the design. And as for Julie, well, she quickly transformed into superwoman and started changing the world, as you've all witnessed. Very grateful to SkiBike and Julie, and later so many others, for moving things along when my health took a nosedive and I had to back off.
xo
G
More of my original reasoning about the needs we face(d), from the above 23andMe thread is below. It makes me think this repository function really is important, but it might not have to be created via a wiki (or we could switch to easier wiki software).
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The reason I wanted to create a separate group is that I don't think knowledge of the kind most of us are interested in is best organized in a long, mostly (both temporally and spatially) linear form. These discussion forums begin with an idea, then someone adds to it, or corrects it, then you scroll down and see another addition, or another correction, or a qualification, then you scroll down and see more, and so on. The up-to-date "truth" doesn't exist in one easy to assess and easy to access place. For example, to find out the status of research on turmeric and AD I have to read a long thread -- actually several threads. There should one be place I go: "Status of turmeric AD research" (or something). Or begin with a table: "Putative anti-AD regimens". I scroll down the left hand column past coconut oil, exercise, etc., to turmeric. Scroll across its row to the next column, "Strength of evidence", where I read "fairly good" (or whatever). Next column "Nature of evidence", where I read "large epidemiological studies", "controlled expts. in mice". Next column, "References"; next column "More info" (where you click to get background and details on turmeric/curcumin and AD).
When new information comes along, the table (or background and details page) changes, instead of what happens with a linear discussion to which one adds, instead of modifying, thus creating a messy palimpsest: the old, incorrect information is still there at the beginning, you have to read through it to the end to arrive at the current state of things. I find that a waste of time -- even if the history of the discussion can be interesting and entertaining, to be sure!
If I were running 23andMe, I'd have -- well, at least I'd be tempted to try to have (it may be too chaotic and require too much monitoring) -- two versions of the page for each condition (with the "How it works", "Technical report", etc. tabs): one the official one, one a wiki (with some monitoring, and LOTS of disclaimers). I don't mean to criticize 23andMe. They've struck a good compromise: their official info pages do much of what I want the wiki to do: they organize knowledge in a non-messy way, and are updated. And people who want to add to it can (but only via the disc. forums).
Welcome aboard and Larry- Thanks, yes, tons of possible research subjects here! W. aboard: good point, though, that we don't know how many actually know their status (and want to participate in research). I've always assumed most people would want to know, but maybe not!
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