Suggestion: Best Research Threads

[Tumbleweed]

Hi, everyone:

I find myself repeating a lot of information or providing links to past Topics for new people joining our forum who are in search of answers. That's fine, I don't mind. But it's occurred to me that we could stop re-inventing the wheel so much and, at the same time, provide a great service for newbies who want information quickly after initial diagnosis.

I'm not sure how feasible this is, but I'll put it out there for people to give their opinions: should we create a new section of the forum that gathers all the best member-reported research all in one place? The idea is it wouldn't be an area where new posts are made. It would be "read-only" and would comprise copies of the best posts that give information on all things AN-related: benefits and risks of different types of treatment, personal experiences with different treatments and advice for how to prepare for them (e.g., useful items to bring to the hospital before surgery, how CyberKnife treatments are carried out from the patient's perspective, etc.), how to read your own MRI, a list of questions to ask doctors when you're trying to decide which type of treatment is best for you, more-or-less-technical descriptions of various tests (ABR, hydrops, MRIs, CT scans, audiograms, etc.) useful in diagnosis and treatment planning, contact information for doctors who offer free consultations, etc. These entries could be excerpts from threads (one or more individual posts on a Topic) or the entire thread; the latter would require the smallest amount of work and is therefore the most feasible way of handling this.

Posts/Threads could be chosen either by a moderator or "elected" for inclusion by virtue of members recommending it 'x' number of times.

Perhaps this idea requires too much volunteer work that simply isn't available. But I thought I'd throw it out there for everyone's consideration. I fear that some very beneficial information gets lost over time after a Topic hasn't been visited in a long time and is either retired or forgotten.

What do you all think?

Sincerely,
TW

[CHD63]

TW .....

You do have a point about finding information easily on a given topic.  However, for me, one of the important aspects of this forum is the personal replies one-on-one.  The support of the forum is a HUGE part of its value.  I know you are not suggesting eliminating that, but part of the research process is also developing a support network at the same time.  When I first began looking at this forum (actually not regularly until I was post-treatment), I used the Search box to find specific information.  This is not always complete, as you well know, but it is a starting point.  That is where we, as regulars, can do our part to provide a link (as you do very often ..... thank you!) to more relevant information.

The moderators on this forum do a great job making sure things are working smoothly, putting posts in the right category, and being tremendous watchdogs for things that might be inappropriate or spam.  They are doing this without pay (as far as I know).  It would add a great deal to their workload to sub-categorize within a category.

Come to the Symposium in Cincinnati and maybe we "forumites" could toss around some ideas about this.  It's always good to have new thoughts/ideas!

Clarice

[Tumbleweed]

In my replies to posts, I do try to provide links to people asking for information when I think it is appropriate. The problem is that I cannot keep up with all the posts and I miss a lot of opportunities to help people.

My perspective is that while the emotional support we provide one another is an ongoing and changing dynamic tailored to each individual's needs at the time, the research changes very little over time, so it would be good to have it gathered in one place for review. Even just one "Recommended Reading" page that has links to posts that contain useful research notes would be helpful. It needn't provide anything more than a link. If there were, say, 30 such links on one page, a newbie (or even a veteran AN patient looking to brush up on their knowledge) could simply click on each link in turn to read each thread. They could probably learn most all the technical stuff they need to know within a couple hours of going through the links and reading.

The moderators see so many of these research posts and are well-informed themselves. They have a good perspective on what is valid and useful. Perhaps when they see a post that they think provides valuable information, they could simply add a link to it on the one page that contains all the research links. It needn't be an exhaustive list. Even just several links would be better than none and would provide a starting point for newbies at their wits end for where to begin amidst the turmoil of initial diagnosis.

Sincerely,
TW

[Lizard]

Yea I think this is a great idea.  I always find myself opening up google or another page to paste links.  It doesn't have to be a complete listing, just a starting place for a worried newbie to get some great information quickly.
Liz

[jerseygirl]

TW,

This is a great idea! I was just thinking about something similar. How do we post big research papers? They have to be stored somewhere. A great paper about radiation came my way recently but I was unable to excerpt because it was very dense and read-only copy. Any ideas about how to solve this problem? Or, instead of collection of research papers do we just summarize and express our opinions?

       Eve

[Tumbleweed]

TW,

instead of collection of research papers do we just summarize and express our opinions?

       Eve

I personally think summaries would be fine, but opinions possibly not. To make the thread lean and objective, it would, IMO, need to be purely research. But summaries I feel would be okay. There is an advantage to newbies (or anyone, for that matter) for us to pre-digest a large volume of info and present it in condensed form with only the most salient facts. That's what I usually attempt to do.

Of course, there is a fine line between summarizing and editorial comment. Once we start interpreting and regurgitating research, inference can easily slip in. That's why it would be best if it were moderated. The last thing we want is for the facts to be stretched, even unintentionally, and a newbie to get wrong information.

At this point, we need to hear from the moderators whether or not this is feasible. I suspect the silence is due to nobody wanting to take this on. They've already got a ton of work on their hands, just moderating this forum. But if a moderator were willing to filter the thread for appropriateness, we could send them candidates for inclusion via PM.

We could start an ad hoc thread ourselves, but unless it is filtered before posting, it's bound to be diluted by inappropriate posts that should be moved elsewhere. The thread would ideally be read-only by members so it wouldn't be watered down by people expressing their thanks, for example, for finding the information. Concise, objective, easy to get through in an hour or so; that's what I would personally hope to see.

If it's not possible to find a moderator willing to take this on, we could try starting an ad hoc thread ourselves. If it meets our objectives, I would hope the moderators could make it an "evergreen" thread that is never subject to retirement. And hopefully it would be given a prominent place in the navigation tree at the root level of this website.

Best wishes,
TW

[jerseygirl]

It is awfully hard to separate opinion and editorial comment from what the articles originally intended. That is why I suggested posting the original articles so that newbies can do their own research. The alternative is posting excerpts from the article and avoiding your own interpretation.

 Eve

[Jim Scott]

FYI:

Moderators are watching this thread and have noted the suggestions.  We're awaiting a new tech company and some upgrades and until that has been accomplished no action will be taken.  However, the concept postulated does have merit.

Jim

[ppearl214]

Hi all

As my dear-cohort-in-Moderating-crime, Jim, has noted... it certainly does have merit, yet, please keep in mind one thing.....Eve makes a very valid point.... to try to separate opinion, editorial content, etc is most difficult to achieve, esp after ALL the years the forums have been around....... IMO, the best sources are your treating physicians as they are most intimate with your particular AN journey, inputs from folks here (in all of the forums) and doing a meld of all info for your paritucular situation.  Much of the info on the forums is quite insightful and it's up to us, individually, to take what we learn and apply it to our own situations.  The homepage of the ANA (www.anausa.org) also provides inportant info to help with the cause so take all info obtained and apply it to your own situations.

Easier said then done...... too much to sort through...... have to count on yourselfs to make the best, well-informed decision you can for your own particular AN journey.

Sorry, had caffeine this am.......   

Phyl

[Tumbleweed]

I agree that Eve makes a very valid point. I expect whatever we may do in addition to or in lieu of copying and pasting or linking to research will be imperfect. But I think that, especially with a disclaimer ("do your own due diligence... we make no representations as to the accuracy of... blah blah blah") in a preamble, instituting a best-research thread will only make the initial adjustment to living with an AN easier for newbies.

Thanks to our moderators for considering this at some point in the future.

Sincerely,
TW