ruraldreams + medical-research   19

How research goes viral - MIT News Office
What makes a new finding in biology circulate widely? An MIT economist knows: Make the original research materials accessible.
open-science  open-data  research  medical-research 
28 days ago by ruraldreams
Data Diving | The Scientist
What lies untapped beneath the surface of published clinical trial analyses could rock the world of independent review. (About unpublished data)
data  research  open-data  open-science  medical-research 
4 weeks ago by ruraldreams
The Miso Project
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
data  programming  research  webdev  medical-research  journalism 
5 weeks ago by ruraldreams
How Patients Can Become Partners With Doctors - WSJ.com
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.
e-patient  mcmsocnet  registry  medical-research  research 
6 weeks ago by ruraldreams
7 Ways to Ensure Gifts for Medical Research Do More Good
To better assess performance in converting scientific discoveries to human therapies, research organizations need to articulate clear goals and establish specific measures to gauge their progress. Without such a performance-assessment system, grant makers do not have a good way to determine which organizations should get more grants in applied medical research. We could spend literally billions of dollars and make very little headway toward new patient therapies.

Here are the seven key questions grant makers should ask about the performance of organizations trying to apply medical research.
medical-research  philanthropy 
12 weeks ago by ruraldreams
You never call, you never write: why return of ‘omic’ results to research participants is both a good idea and a moral imperative
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.
rare-disease  return-of-results  ethics  medical-ethics  medical-research  research 
12 weeks ago by ruraldreams
Seattle's Sage Bionetworks seeks a drug-discovery revolution
Article ends with:

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.
open-science  research  medical-research 
february 2012 by ruraldreams
Opinion: Occupy Science? | The Scientist
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.
occupy  citizen-science  mcmsocnet  medical-research  open-science  open-data  registry  biobank 
january 2012 by ruraldreams
Scientists, Share Secrets or Lose Funding: Stodden and Arbesman - Bloomberg
Calls for government mandates for researchers to share not only findings but also data and computational methods.
open-science  medical-research  open-data 
january 2012 by ruraldreams

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