Transparency in Healthcare and Scientific Research


(from the Open House Project blog)

As the research of the Harvard Transparency Policy Project has made abundantly clear, applying the principles of openness and transparency to complex systems demands a careful approach to epistemic nuances; questions like what should be knowable to whom need to be answered before disclosure requirements are implemented, and need to be built into a disclosure regime’s initial design. (more)

It looks like the Committee for Economic Development, a DC public policy NGO, has undertaken a systematic study of openness as it applies to American Health Care. Their new report (pdf), "Harnessing Openness to Transform American Health Care", examines healthcare’s potential transformation in the face of Internet technology, much like the Open House Project has for Congress: "Our goal in this report is to bring the DCC’s expertise in information and communications technology and electronic commerce to bear on those aspects of healthcare that have been or can be changed by the Internet, the continued growth in computing power and data storage capacity, and the increasing digitization of information. These technological changes, and the greater openness that they enable, are visible in areas that range from biomedical research and the disclosure of research findings, through the process of evaluating drugs and devices, to the emergence of electronic health records, and the development and implementation of treatment regimes by caregivers and patients." (pdf, page 1)

This is absolutely a step in the right direction, and I’m glad to see a concerted well coordinated analysis of disclosure in other fields. This study pairs nicely with the recently passed requirement that the National Institutes of Health disclose results of publicly funded research. (I’m not sure which bill is responsible for this reform, if you are, let us know in the comments.)

If you look through the National Science Foundation’s requests for proposals, many of them pertain to the cyber-infrastructure issues that are the stuff of the future of public science collaboration. I’m especially fond of the "Sustainable Digital Data Preservation and Access Network Partners (DataNet)" rfp, because my sister researches HIV, and I’ve witnessed the contorted amalgamation of web searches scientific researchers need to go through to stay on top of their field. Scientific discoveries and health information both face the same public access revolution that legislative information does, and I’m happy to see when the problems are being approached in the same public, collaborative manner.