(from the OHP blog)
Add another tally to the list of public conversations about federal data availability.
The Centers for Medicare and Medicaid Services, part of Health and Human Services, is hosting another in their series of “Open Door Forums“, to discuss Medicare Part D Data regulations. (See here for CMS’s description of the new rule and its data availability implications, and here for an example of coverage of their conference call, and for conference call details.)
This is the nitty-gritty of public data availability. A new public project has created a complex and rich public data resource, detailing the ways that the federal government spends money on drugs through Medicare.
The compromise here isn’t obvious. Whole scale release of the data would violate probably both beneficiary and commercial privacy, so that isn’t really an option. This is, however, public data, with a very clear public benefit. A very large and new public program is generating a huge amount of new and potentially useful information about the way we use prescription drugs. CMS is struggling with how to balance privacy/commercial concerns with the public good involved in releasing the information.
Clear federal information availability guidelines would probably be helpful in cases like this, where there’s an immense stake for everyone involved. Insofar as the information is public, then it should ideally be available for bulk public download and analysis, given that that arrangement doesn’t violate other concerns. Negotiating a new terrain of public data benefits and pervasive data will take measured dialog and analysis (as I wrote on Friday), so it’s heartening to see an agency engaged with the communities affected by their work. I wonder if there’s a place for the public access community within the debate around Medicare data, although my knowledge of health issues makes opinionated involvement impossible.
For other examples of similar officially sponsored public conversations about public data, see the USPTO’s Public PAIR discussions, the EPA’s recent webcast, Sen. Durbin’s broadband dialog, Rep. Honda’s new education legislation, the development of the original e-gov act (partially done online), and the Open House Project.