After meeting Nick at home I started thinking to myself about what projects I am doing which relate to large data sets so that I could see the extent to which I had some ground for collaboration with him and others in this space.
My primary pursuit is public is facilitating public access to information, particularly through Wikipedia, and consequently particularly encyclopedic summaries of anything anyone would want from a general reference work. This is not a data project, but sharing general reference information does can tie all kinds of projects to Wikipedia where they would be seen. I do this Consumer Reports so I especially focus on our organizational interests, but these are broad-ranging because we partner with more than 100 medical specialty societies in the United States. I am always looking for people who are willing to learn Wikipedia for the purpose of using Wikipedia as a vehicle to share health information with the public. Wikipedia is a highly consulted source of health information and has excellent reach to give to the health educator who uses it. I always need to work with health educators who would collaborate with me on Wikipedia to share health information.
Consumer Reports is supporting the idea of “open notes”, which means patient access to their physician notes. I wrote about this in my two previous blog posts, “Visit to Kickstarter” and “Activity trackers and the quantified self in medicine” One is about the quantified self and activity trackers, and the other is about Patients Like Me. We will likely be sharing some kind of position statement in the future and I would like to meet other people and organizations who can make us aware of all perspectives on the subject.
For some years the National Institutes of Health has been friendly to Wikipedia even in circumstances when other organizations dismissed Wikipedia as a fad. On 10 August at the international Wikipedia conference a researcher named Phil Bourne from the NIH’s “Big Data to Knowledge” project will be speaking to Wikipedians about the hope for big data’s use in the future of medical research. “Big data” means a lot of things including data from activity trackers, and I want Wikipedia to support and attract encouragement for the NIH to continue to see Wikipedia as an ally in all things. Perhaps someone from your group would be interested in exploring Wikipedia connections to the Big Data to Knowledge project.
Wikipedia is relatively unknown in the Open Access Movement despite it being a major player as the primary layman work using academic research and connecting journal articles to the public. We need people to promote awareness among scientists of the extent to which the public consumes academic publications through Wikipedia.
There is an “Alternative Metrics” or Altmetrics Movement in which citations to academic literature are valued differently than they would be only with traditional impact factor measures. Some of us on Wikipedia are doing positively radical things with citations, crowdsourced categorization, and feedback. Anyone who supports the idea of a nonprofit neutral third party like a Wikimedia platform managing the cataloging and annotation of academic publications should talk with us.
I have my own ideas about clinical research. Informed consent documents contain some text intended only for delivery and viewing by layman audiences, yet this text is not easy to access outside of the clinical researchers’ monitoring. There is a movement mostly in the UK called “AllTrials” in which organizations are petitioning for a central database of clinical research, similar to ClinicalTrials.gov but a bit more invasive to research companies and more empowering to scientists. I like what AllTrials is doing, but in my opinion, they neglect to consider that the public might want access to clinical trial information as they presume only researchers could want this. As a Wikipedian, I see public demand for highly technical information that I think practically all health care providers, scientists, companies, and governments would deny exists. I want a little more information for the public – nothing radical, but something – and while I think no researcher would say that the public does not have the right to the information I want, at the same time, I expect any researcher would flinch at making the information which they designate as being for the layman public actually accessible to the layman public. I want to talk to someone who wants to talk about the future of informed consent.