Vision of a Structure and Purpose of the Apoe4.info Wiki

[Gilgamesh]

Hi everyone! As some of you know, the main reason I was interested in creating this new site for us was to have a space to organize knowledge (in part simply my own knowledge!! -- which was scattered among bookmarks, Word docs, etc.). I love that we have forums, but, to begin with, I'll be focusing mostly on the wiki.

The idea of the wiki was also born of a frustration with 23andMe's discussion forums. Let's say I want to get an idea of the pros and cons of turmeric. I search "turmeric" at 23andMe, and I get a bunch of hits. I follow the links, and I'm thrown into a discussion with bits and pieces of information about turmeric. I can watch an evolving discussion (once I find it...), but what I want is the community's "crystallized summary", knowing, of course, that the summary is subject to change (in part because these discussions are always evolving!), and might contain lots of qualifications, including things like "the opposing view would contend that...". That's fine. I still want some kind of summary, including a summary of the reasoning/research behind the conclusions.

In sum:

-Discussion forum: production of knowledge (and, for many of our new forums: place for love and support!).
-Wiki: summary of knowledge.

This is why I started http://www.snpedia.com/index.php/APOE4_Community (and am grateful to SNPedia for hosting it!). I wanted a summary of my own knowledge, and I wanted it to be public, because I thought people could benefit from my research, and I assumed I, and others, could benefit from others' research. And I wanted it to be a wiki so it could be updated easily. The production of knowledge was working well at 23andMe (and can continue here, of course). It was the summary that was a problem for me.

Now we have our own space for a wiki. Woo hoo!

For now, I just copied over what existed at SNPedia. But I envision, of course, a much more expansive wiki, which means that what is now on one page will have to be moved to separate pages.

There are lots of other structural/organizational questions we may have. That's what this discussion forum topic is for, so fire away if you have any questions or ideas whatsoever! (Discussion specific to a particular page can be conducted on the "Discussion" page for that page, of course -- which you get to by clicking on the "Discussion" tab at the top. Ex: "Hey, footnote 5 points to a dead link, does anyone have a link for that article that works?")

And remember, this is our wiki, which means it's also yours.

And also remember: since it's a wiki, changes we decide we don't like can be undone. So there's no reason to worry about getting everything perfect before making changes.

Here's a suggestion that was emailed to me for the organization of subtopics for each (putative) treatment or regimen:

The intro
Effectiveness
Evidence
Proposed Mechanisms
Related SNPs
APOE-specific Effects
Theoretical Concerns
Summary

Take a look at examine.com for other ideas.

OK, back to work. (As I said, my online presence will be erratic until late Sunday.)

GB

[Julie G]

Hey G, looks amazing!!! I can't wait to jump into this and really flesh out the Wiki. Your outline looks great to me

[Starfish77]

I just looked at your beginning of the WIKI. It looks excellent. You are doing a good job explaining in words that can be understood by a non-scientist. We are so fortunate to have you working on this with your gift for sensible explanations.
I am looking forward to seeing it progress.

[Gilgamesh]

Starfish,

Thank you for your kind words!! But we have lots of people here with tremendous gifts. We are all so fortunate to have this community!

By the way, does anyone have any guesses as to why there've been so few contributions to the wiki from others? I'm surprised.

Best,
GB

[Julie G]

I echo Starfish here. We are blessed to have your excellent work, G (and Susan!)

I also hope we can continue to beef this up as we move along. I've never added to a Wiki before, but think I can figure it out, maybe with some help. I love an academic challenge One problem that I've run up against (maybe others have too) is an inability to access full-texts of current and sometimes even older research. If anyone has some ideas for getting access, I'd appreciate some pointers. I did find a site where I can rent papers for free for 5 mins...often that's just not enough time. Impossible to pull quotes.

Any ideas?

[Gilgamesh]

I fear I've done a horrible job explaining what I think the point of the wiki should be, or could be (all of this purely from my perspective of course), as well as how wiki development typically works. I'll try again later. Meanwhile, one really essential point: wiki contributors ideally should not wait until they have finished copy before making a contribution! Just blast something out, leaving in "(More here later)" notes or whatever. Then you, the contributor, or someone else, can refine the page a little, then a little more, etc.

As for the technical part of making changes, look here:

https://wiki.apoe4.info/wiki/index.php? ... sh/Sandbox

BUT, let me repeat: I understand we're all busy with other things, and I don't expect anyone but me to work on the wiki! I just want to make sure the reason people aren't contributing is that they're busy or have no interest, not that they (mistakenly) think they have to wait until they've mastered 1) a complicated web-development tool and 2) a particular topic about which they want to make a contribution.

GB