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Patients might not know it yet, but they actually have the real power, Friend believes. Sage is developing tools to allow patients to be stewards of their own data, whether it's at their doctors' office or in pharma's hands. The Josh Sommerses of the world will one day be able to say, you want me to join your research? Then share your data.

If patients refuse to play with the nonsharers . . . it's a whole new world.

The inability to identify the molecular causes of disease has led to a disappointing rate of development of new medicines. By combining the power of community-based modeling with broad access to large datasets on a platform that promotes reproducible analyses, we can work toward more predictive molecular maps that can deliver better therapeutics.

If you have an implanted medical device that can collect data in your body, who owns that information? There doesn't appear to be a clear answer to the question. Brooke speaks to Hugo Campos, a patient advocate and founder of the ICD User Group, about his unsuccessful attempt to obtain the data collected by his own implanted defibrillator.

Genomics research increasingly depends on access to large pools of individuals’ genetic and health data, but there is mounting dissatisfaction with governance approaches that erect barriers between donors and the biomedical research in which they are participating. Typically, participants have little or no opportunity to track how their data are being used, what discoveries result, and what the new knowledge might mean for them, even when findings are of life and death significance for the participant.

Calls for government mandates for researchers to share not only findings but also data and computational methods.

This was the first annual Data Scientist Summit, and I will no doubt be back. With that said, discussion of technical topics had a bit of an introductory flavor to them, which made the discussion of the technology seem dated. For example, “Vanilla” Hadoop was introduced as a tool for processing vast amounts of data. I would expect that most Data Scientists have worked with Hadoop, or at least know what it is. Hadoop is somewhat old news in terms of “cutting-edge technology.” Tools like Pig, Cascalog, HBase, Hive, Cascading, etc. would have been a better discussion topic. I was also disappointed with how little coverage of tools (except for Hadoop, NoSQL, and enterpise databases) there was. It seemed as if R had gone M.I.A. and I was surprised that there was such little discussion of visualization tools like Tableau, Processing, Gephi, D3, Polymaps, etc.

"A few years back, when a user at the University of Manchester asked for help with the ‘diff – files too big/ out of memory’ problem, I wrote a modern version that I called idiffh (for Ian’s diffh). My ground rules were:<br />
Work on any text files on any operating system with a C compilerHave no limits on, e.g., line lengths or file sizeNever ‘give up’ if the going gets tough (i.e. when the files are very different)"

"CKAN is the Comprehensive Knowledge Archive Network, a registry of open knowledge packages and projects (and a few closed ones).

CKAN makes it easy to find, share and reuse open content and data, especially in ways that are machine automatable."

"Scientific publishing as it stands is an inefficient way to do science on a global scale. A lot of time and money is being wasted by groups around the world duplicating research that has already been carried out. FigShare allows you to share all of your data, negative results and unpublished figures. In doing this, other researchers will not duplicate the work, but instead may publish with your previously wasted figures, or offer collaboration opportunities and feedback on preprint figures."

The challenges of making climate code and data open.

Dryad is an international repository of data underlying peer-reviewed articles in the basic and applied biosciences. Dryad enables scientists to validate published findings, explore new analysis methodologies, repurpose data for research questions unanticipated by the original authors, and perform synthetic studies. Dryad is governed by a consortium of journals that collaboratively promote data archiving and ensure the sustainability of the repository.

""They told me that EPA scientists had reviewed the originally lifecycle study and determined it wasn't scientifically sound, and I asked if it had been documented, if there was a hard copy," he says, "The [employee] said yes, and I asked if I could get a copy." And just like that, he had the proof he needed that the EPA had overlooked something that could be killing America's bees."

heather piwowar, research remix

blogging about the science, engineering, and human factors of biomedical evolution and ecology research data sharing and reuse