Open Access News

News from the open access movement


Wednesday, November 12, 2008

Data sharing for public health

Kaitlin Thaney, Data sharing in Epidemiology, sniffing the beaker, October 10, 2008.

This past Monday, I was invited to speak on technical issues surrounding data sharing at the Wellcome Trust, in coordination with the [World Health Organization]'s Health Metrics network. The meeting - "Code of Conduct for the Collection, Analysis and Sharing of Health Related Research Data in Developing Countries" - brought together public health researchers from the developed and developing world, social scientists, demographers, representatives from the Trust, members of the Health 8 (H8), and other experts (me being one?). As the title suggests, the Trust is looking to craft a draft code of conduct for data sharing in developing countries, to hopefully be presented at their next meeting in Bamako, Mali this November [Global Ministerial Forum on Research for Health, November 17-19, 2008].

Data sharing is an issue near and dear to my heart, and a key focal point of our work at Science Commons. With that said, the majority of the conversations we engage in with the community on this topic don't traditionally to date include social scientists, or at least, not as much as those in the life sciences. ...

Out of the entire day, there were a few main points of agreement that emerged: ...

2. the agreement that in terms of ethics - it is unethical to not share data if doing so can help a community or assist public health research. (a very powerful statement for an audience that many self-ascribed as "dinosaurs" when it came to data sharing policy and practice). ...

6. we are a long way off from fully accepting this paradigm shift and there is a significant cultural barrier to sharing data / putting data in the public domain. that reality can't be glossed over, and needs to be recognized.

Another part of Monday's conversation revolved around "access" - as was expected. :) With such a variety of stakeholders, the discussion kept coming back to a hierarchy of access, along a spectrum from an embargoed access, to closed access, to fully "open access" data ...

All in all, the proposed code of conduct draft needs some work, and this is an iterative process, still gathering feedback from policy makers, think tanks, scientists and public health officials. ...