Sciencecommons.org in top 20 list of sites scientists should know

Sciencecommons.org has been listed as one of the Top 20 Web sites every scientist or engineer should know by Baltimore Examiner. It's an informal list, including resources to find papers (ahem, sadly not OA), sort through the acronym soup so many of us find ourselves in daily, and Grants.gov (everyone needs moo-lah).

Nevertheless, we're happy to be cited, and I encourage you all to check out our site. Over the next few months we will be working to make the site more accessible and useful, and will be asking for feedback on what exactly you, our users, need. Keep an eye out for more on that this summer.

$120m - will it help, and a look at the greater issues

The last few months have consisted of a blur of meetings, round table discussions, presentations, and impromptu conversations on the train and at universities - all largely revolving around a few key topics. There's been the open science and knowledge sharing in the sciences dialogue, data policy and drafting codes of conduct, and innovation and access models for rare and neglected disease research.

The last of those topics surfaced this week, after catching an item on Scientific American's 60-Second Science Blog. The post deals with drug development and NIH's recent commitment of $120 million over five years for drugs and therapies for rare and neglected diseases. Woo hoo. I support that. But the real question, surfaced in this post as well - will that make a difference?

One of these meetings I attended over the last 3+ months of travel was a recent summit on innovation and access by the National Organization of Rare Diseases (apparently "neglected" is implied? :) ) The crowd - independent disease foundations that were members of NORD, FDA representatives, folks from the Office of Orphan Products, biopharma, and other medical professionals, among others. It was their annual meeting, and as somewhat expected, included an initial 1.5 hour "congratulations" and offering of thanks to one another for their "contributions to rare disease research" as a kickoff to the meeting.

Excuse me here for being cynical and a bit brash, but were they congratulating one another for a drug pipeline that a) is insanely costly, b) takes approx. 17 years to get a drug to market IF it succeeds, c) doesn't work in favor of the community they're serving? The fact that a significant portion of patients afflicted with the 6,800 + diseases characterized as "rare" and/or "neglected" use off-label drugs or find other ways to circumnavigate not only the prices of these therapeutics but also the FDA and approval process doesn't seem like a win. Good for finding a way to alleviate symptoms, helping people potentially live longer, but not a win for bringing the price of these treatments down and getting them into the hands of those that desperately need them.

Trust me, even as I sat there in the audience, I was able to find out about a FDA approved hypertension drug that has shown positive results in Marfans patients (which a dear friend of mine has) to maintain muscle growth and lower / maintain TGF-β signaling levels. Some are getting this through basic hypertension diagnoses and prescriptions, whether they have it or not. Talk about working around red tape.

Now, I fully realize that drug companies need to make money, and that a portion of that comes from selling drugs for diseases that affect a large subset of people. The money and logic just isn't there, strictly thinking of $$$, for those diseases that instead of affecting 500,000 a year may only affect 100. I get that. Clinical trials are difficult to conduct with a small sample size. It's difficult, with how expensive it is to bring a drug to market (approx $1 billion), to get any of that cost back. But not admitting that there's a problem with the pipeline? Really?

After the first set of speakers and a keynote by Gov. Tommy Thompson (WI), the moderator opened the floor to a few comments from the audience, giving us each a few minutes to make remarks on the day. At this point, it was two hours into the event ... without mention of "innovation" or "access" outside of "access to $200,000 therapeutics".

For those familiar with our work at Science Commons (and the above opinions are certainly influenced by that work, but are still my own), you know that the concepts of "innovation" and "access" are integral parts of our mantra, our raison d'être, our everyday work. But it seemed like somehow, in the midst of all of the congratulating for thousands of people in their "network" not having any sort of drug or treatment, these two words - the themes of the event - went unmentioned.

I raised my hand to have a turn, puzzled by all of this and made a comment, which was later backed and echoed by Janet Woodcock of the FDA and Francis Collins, the famous geneticist (thanks to both). I talked about the reasons we were all there - to talk about "innovation" and "access" in terms of access to research, accelerating scientific discovery, new "innovative" models to help fix this broken pipeline we all were dancing around, and get therapeutics and results to patients faster, cheaper and more successfully. It was astonishing a) how many people were nodding and smiling when I brought this to the forum and b) the fact that if not said, it may have gone unmentioned for the rest of the meeting. All of a sudden, the tone changed - with Francis Collins emphasizing the importance of Open Access and Janet Woodcock even saying "Put information into the public domain".

Small wins in an area that still needs a bit of coaching (like others, certainly) on making better use of a poorly funded wing of disease research.

Will $120 million over 5 years make a difference? Certainly, in some respect. How large of a difference depends on what model is constructed to hopefully better share the scientific knowledge we're pumping tens of hundreds of thousands of dollars into, the funding model, etc. Perpetuating the "walled garden" approach does not "fix" the system. Offering therapeutics that patients cannot afford does not solve the problem. And 17 years (at a minimum) and $1 billion per drug is just not acceptable. All need to be further addressed, because at the end of the day, in terms of drug development, $120 million is barely a blip on the radar screen.

ROFLDNA up for sale, proceeds to the commons

Prepare yourself for a heavy dose of awesome. In perhaps the most clever Science Commons fundraiser launched by a third party, the folks over at breadpig and DNA11 have brought us ROFLDNA - a set of leading Internet personalities' DNA and autographs, all being auctioned on eBay. And the best part, all proceeds will go to Science Commons.

Among some of the famous Internet superstars out there (is that the correct way to describe? help me characterize) we have Jay "TRON Guy" Maynard, MC Frontalot and the man behind Chuck Norris Facts - Ian Spector, among others. They've all lent their DNA to the cause - to help make scientific research more efficient through our work here at Science Commons.

And I do have to say, I have to agree with the tagline for the site ... this is some deoxyriboneucleic awesome.

What's even more incredible about this is that is shows how far modern technology and collaboration have gone to drastically lower the costs and barriers to DNA synthesis and synthetic biology. The iGEM competition is a leading example I've pointed to in the past, showing the potential out there for the remix culture in the sciences. Hell, we even own a DNA Explorer Kit (his name's "Dean Nay" ... say it fast, see if you get the nerd humor) that we proudly display in the office. Times they are a changing and the potential for explosions of innovation isn't coming. It's here. Many thanks to the people behind this for yet another incredible example of this, and here's hoping we get some bids. ;)

Support Open Access to scholarly content? Vote us up on reddit.com

So, first and foremost, I have to say - being spotted on Reddit.com, and seeing the story at #2 is really thrilling. Tease me all you want ... I'm pumped.

The fact that the plug is to support our project - specifically increasing access to scholarly content - and elicited such a response from the public makes this extra cool.

And no ... I didn't post the plug. This one is just a delightful surprise pointed out by a dear friend. :)

Support Open Access to scholarly content? Support Science Commons, even if just by voting the story up on reddit.

CC and PD on whitehouse.gov

Wow, that didn't take long. As if I needed another reason to jump up and down in jubilation today ...

Now up on Whitehouse.gov:

"Copyright Notice

Pursuant to federal law, government-produced materials appearing on this site are not copyright protected. The United States Government may receive and hold copyrights transferred to it by assignment, bequest, or otherwise.

Except where otherwise noted, third-party content on this site is licensed under a Creative Commons Attribution 3.0 License. Visitors to this website agree to grant a non-exclusive, irrevocable, royalty-free license to the rest of the world for their submissions to Whitehouse.gov under the Creative Commons Attribution 3.0 License."

(Emphasis, mine.)

Thank you, Obama administration, for recognizing the need for openness. I salute you.

Times, they are a-changin'.

(Also, for CC's official blog post, click here.)

Best video on how memes spread I've seen

If this doesn't make you want to get up and do the T-rex-ish dance move, I don't know what will ...

Spotted over on The World's Fair ... A video on how memes spread, as depicted by silly dancing.



Awesome, absolutely awesome. ;)

Open Science@PSB -- participating virtually

So, right now, I was slated to be in sunny and warm (emphasis on the warm) Kohala Coast, Hawaii - prepping for a day of Open Science discussion at the Pacific Symposium on Biocomputing. Due to a certain financial crisis, I sadly had to back out of this commitment. Thankfully, with the help of Cameron Neylon and some social networking tools, the abridged version of the presentation is up now -- hopefully serving as a stimulus for conversation surrounding our principles of Open Science.

To download the presentation or to learn more about the event, click here. You can also view the PDF version online on my slideshare page. Thanks again to Cameron and Shirley for their hard work in putting this together. I wish I could be there. Boston's like a giant ice rink ;) Oh, New England.

The organizers have set up a variety of ways to join the conversation virtually, from video to FriendFeed channels. I encourage you all to participate, and look forward to hearing more about the event. As always, please feel free to contact me re: the presentation or to join the discussion. This is only the beginning of the dialogue, a very important one to have.

Jesse Dylan's new video on Science Commons

(Video available under a CC-BY-NC-ND-3.0 license)

Many thanks to Jesse, the members of our staff and board featured here, and to the broader CC community for their ongoing support. Times are tough financially - CC and SC need your help. Every little bit counts.

Hat tip to the President-elect

I just have to say, President-elect Barack Obama's new media team is really on top of their game.

First off, he's a Creative Commons user ...

Second, he's engaging with a whole new - and extremely important - demographic, through weekly videos speaking directly to the people through YouTube. I cannot stress how happy I am to see the soon-to-be head of our Executive branch incorporating this into his outreach. It's about freakin' time. Bora also writes on this over at a Blog around the Clock. Apparently I'm not the only one picking up on this ;)

Costs and Benefits of OA (part 3) - Berlin 6

Fred Friend offered some insight into the costs for Institutional Repositories, as well as some closing remarks.

He pointed to Alma Swan's study of these costs (found in the DRIVER guide to European Repositories) - "The Business of Digital Repositories". The study shows that there is a huge variation in start-up costs according to whether free software is used, the number of staff days required to set up the system, and which functions are included in these costs. Another source of information, Friend says, is the UK LIFE project - which speaks of costs as illustrative, rather than absolute. This provides good methodology, Friend says, that we need to create a methodology for analyzing costs.

It's very difficult to find a norm, since there are so many factors that affect cost. A wealth of data has been aggregated on this, but outside of very general assumptions, it's difficult to come up with a definite conclusion.

"If there's little known about IR cost ... there's even less known about IR benefit"

Benefits are currently described in very general terms. Are these general statements sufficient to justify to a university finance office an expenditure of tens of thousands of dollars / euros / pounds per year? Can these benefits be quantified in financial terms? Should they be? We need to be more specific in describing the benefits.

"It can be done," Friend says. There are benefits. We all know that IRs serve an important role, but we do need more data and a way of messaging this if we are going to make a case for the long term support of a repository.