What makes a new finding in biology circulate widely? An MIT economist knows: Make the original research materials accessible.

What lies untapped beneath the surface of published clinical trial analyses could rock the world of independent review. (About unpublished data)

Miso is an open source toolkit designed to expedite the creation of high-quality interactive storytelling and data visualisation content.

The first release under the Miso Project is Dataset, a JavaScript client-side data management and transformation library.

Miso is a set of libraries to be released over the coming months that simplify the processes of managing data, building reusable components, and authoring narratives. Miso is in active development, and will have components released as they are completed. Follow along: @TheMisoProject & Github

An online network for sufferers of inflammatory bowel disease suggests a new way of treating chronic disease, letting patients collaborate with doctors in collecting data and suggesting ideas for treating their condition.

Startups frequently use surveys as a cheap and easy way to get feedback from users. But the resulting data will only be as good as the survey itself.

RAREhealth Exchange is an undergraduate collaborative that assists clinicians, patient services organizations and researchers to define natural histories of rare diseases.

We do this by helping assess and score rare disease patient medical records. Here is a link to our PLoS One paper on how undergraduate students can help with defining natural histories.

Natural histories are important because they define what a disease is. They are also used to determine whether experimental therapies are working. Rare disease patient medical records are an invaluable source of natural history but remain under-utilized due to insufficient resources.

The rapid emergence of whole-genome and whole-exome sequencing of research participants has helped to revive the debate about whether genetic and other ‘omic’ data should be returned to research participants, and if so, which data, under what circumstances and by whom. While partial disclosure of such data has been justified in cases where participants’ lives and health are threatened, full disclosure appears to remain beyond the pale for most researchers and bioethicists. I argue that it should not be and that the objections to full disclosure short-sightedly favor near-term considerations over long-term benefits. Return of genomic data to those who want it, even if a difficult undertaking and even if the meaning of the data is unclear, engages participants in science and the research enterprise, and positions them to be better stewards of their own health and wellbeing.

Advocates and opponents of “open access” for government-financed scientific research are girding for a long battle before Congress, which has little enthusiasm for either extreme.

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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.

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.