4 ms·

This kind of news makes me wonder if maybe we should just give up completely on patient privacy & by default just share everything.

by c1sc0 16y ago

peteforde 16y ago
Michael Nielsen is working on a new book called "Reinventing Discovery" which I very much hope is a step in this direction. http://michaelnielsen.org/blog/michael-a-nielsen/ http://michaelnielsen.org/blog/michael-a-nielsen/ At any rate, the folks on PatientsLikeMe.com are sharing, and they have results to show for it: http://www.ted.com/talks/jamie_heywood_the_big_idea_my_brother_inspired.html http://www.ted.com/talks/jamie_heywood_the_big_idea_my_broth... Really inspiring stuff, because I assure you that the folks participating in these programs do not consider themselves hackers OR radicals.
- michael_nielsen 16y ago
  Thanks for the shout out, Pete. A few bits and pieces: Creative Commons has started an organization called Science Commons that has done some great work on getting scientists to share their data: http://sciencecommons.org/ http://sciencecommons.org/ A promising step in this direction is Sage Bionetworks, which is attempting to use an open source style approach to drug development: http://www.sagebase.org/ http://www.sagebase.org/ There are some very well known people behind Sage, and it's received backing from Merck (and Science Commons), among others. See, e.g., http://creativecommons.org/weblog/entry/19646 http://creativecommons.org/weblog/entry/19646, which states that Merck has backed them to the tune of 150 million dollars. At the moment they're just getting off the ground. A much broader overview on open data and related issues can be found in Peter Suber's open access timeline: http://oad.simmons.edu/oadwiki/Timeline http://oad.simmons.edu/oadwiki/Timeline Another interesting step is the Federal Research Public Access (http://www.arl.org/sparc/publications/articles/FRPAA-introduced-US-House-of-Representatives.shtml http://www.arl.org/sparc/publications/articles/FRPAA-introdu... ), which would make most US-government sponsored research publicly available. It's not quite the same as open data, but is very consonant with it.
- nickpinkston 16y ago
  Awesome set of links Pete!
sspencer 16y ago
I for one have no reservations whatsoever sharing ANY medical data gathered concerning any illnesses I have. If it helps save just one life, it is worth sacrificing whatever illusions I have left of privacy as a patient.

This kind of news makes me wonder if maybe we should just give up completely on patient privacy & by default just share everything.

by c1sc0 16y ago

This kind of news makes me wonder if maybe we should just give up completely on patient privacy & by default just share everything.

peteforde 16y ago

Michael Nielsen is working on a new book called "Reinventing Discovery" which I very much hope is a step in this direction. http://michaelnielsen.org/blog/michael-a-nielsen/ http://michaelnielsen.org/blog/michael-a-nielsen/ At any rate, the folks on PatientsLikeMe.com are sharing, and they have results to show for it: http://www.ted.com/talks/jamie_heywood_the_big_idea_my_brother_inspired.html http://www.ted.com/talks/jamie_heywood_the_big_idea_my_broth... Really inspiring stuff, because I assure you that the folks participating in these programs do not consider themselves hackers OR radicals.

michael_nielsen 16y ago
Thanks for the shout out, Pete. A few bits and pieces: Creative Commons has started an organization called Science Commons that has done some great work on getting scientists to share their data: http://sciencecommons.org/ http://sciencecommons.org/ A promising step in this direction is Sage Bionetworks, which is attempting to use an open source style approach to drug development: http://www.sagebase.org/ http://www.sagebase.org/ There are some very well known people behind Sage, and it's received backing from Merck (and Science Commons), among others. See, e.g., http://creativecommons.org/weblog/entry/19646 http://creativecommons.org/weblog/entry/19646, which states that Merck has backed them to the tune of 150 million dollars. At the moment they're just getting off the ground. A much broader overview on open data and related issues can be found in Peter Suber's open access timeline: http://oad.simmons.edu/oadwiki/Timeline http://oad.simmons.edu/oadwiki/Timeline Another interesting step is the Federal Research Public Access (http://www.arl.org/sparc/publications/articles/FRPAA-introduced-US-House-of-Representatives.shtml http://www.arl.org/sparc/publications/articles/FRPAA-introdu... ), which would make most US-government sponsored research publicly available. It's not quite the same as open data, but is very consonant with it.
nickpinkston 16y ago
Awesome set of links Pete!

sspencer 16y ago

I for one have no reservations whatsoever sharing ANY medical data gathered concerning any illnesses I have. If it helps save just one life, it is worth sacrificing whatever illusions I have left of privacy as a patient.