“If you miss the train I’m on…”
…why am I channeling train songs by Peter Paul and Mary this morning? Because today is the 3rd excellent TRAIN series I’ve attended as part of a new program by Faster Cures. I think this type of series points to how information will be effectively shared in our industry in the future.
Today it was “Alzforum – how to build a thriving online community” presented by Gabrielle Strobel. You can check out the living, breathing phenomenon here:
I watched previous TRAIN WebEx meetings by Francis Collins (NIH Director) on translational science, as well as one with Stephen Friend (Sage Bionetworks) and John Wilbanks (Creative Commons) on data collaborations – both were top notch.
Here are some rough notes I’m taking as the talk is going – so typos are all mine (Barry Bunin, please email firstname.lastname@example.org with feedback).
The Alzforum forum is an online community of researchers, clinicians, and journalists (often with PhDs).
Alzheimer’s seems to be an area, much like neglected disease, where the problem is beyond the abilities of any individual company or researcher, so it demands a collaborative approach.
Alzforum moved from articles to data, an interesting trend.
They work to have expert comments, rather than information from folks who don’t have something compelling to say. A cross between a moderated newspaper, a database, and PubMed focused on Alzheimer with no anonymous commentary – with the exception of highly genetic forms of Alzehimer’s disease which may worry relatives.
They do webinars once a month with 40 -150 attendees. Mostly US researchers presenting.
They cover topics such as the different experiences with Lumbar Puncture (aka Spinal Taps) in Sweden versus US – using actual results of clinical procedures for scientists to use.
They allow hypotheses outside the fringe. Be open, but rigorously challenge outside ideas. So they featured one from the UK, such as HSV-1 and Downs Syndrome and Stress Granules connections to Alzehiemer’s. Important to separate research, from proven clinical care. Kind of like surfing the internet, still need to bring your own filters to judge…
We’re getting ready to do a free LIVE GoToWebinar July 14th at 8:30AM PT on Drug Repurposing covering work from David Cavalla, Christopher Lipinski, NCGC, and CDD – so it was interesting to see the recovery from a minor hiccup when the speaker could not see the slides due to the WebEx technology.
After gracefully recovering, Gabrielle Strobel highlighted the following:
Alzgene – field synopsis of genetic association studies in AD (top result today: APOE_c2/3/4) for experts and non experts for all case control studies in various geographies. Goes beyond PubMed, with three types of meta-analysis.
Alzrisk AD epidemiology database – fewer risk factors, but complicated literature w/ many variability and changing research standards over time. Today 8 risk factors ID (Diabetes, Inflammatory markers, Vit A and C, Hypertension, etc).
Partnerships: Prize4life, Curators/Scientists, Journal of Alzheimer’s Disease, ADDF
1. What was the tipping point for Alzforum?
Answer: Not an overnight inflection point, but driving factor in early 2000s when covering the news in an interactive way (not just one line quotes, but full opinions).
2. What has drawn people in?
Answer: Having quality content and journalism – fair and balanced. Getting the story right.
3. How technically and tactically did you get folks engaged, how much of the work is manual versus automated curation?
Answer: 12 people, some actively curations. Partner with others to curate relevant databases from nightly pubmed downloads.
4. What was the motivation?
Answer: Lots of scientific optimism, new knowledge, but not many new treatments. Perfect for the Internet to accelerate collective learnings.
5. What’s the criteria for a Milestone paper (recall ~10/year)?
Answer: start w/ recommendations, look at scientific citations to get it down to 200, then put it to the community to vote
6. What’s your main contribution: the info, network or dialog?
Answer: All of those. Breaking down communications, easier to collaborate.
Non-experts can get involved faster than an expert weding through Pubmed. Nongeneticist can access genetic trends, without expertise.
7. What gets the most traffic?
Answer: the news.
8. Last thoughts?
Answer: This approach is applicable to any disease field.