Sunday, December 03, 2006

The Privacy Agenda

In what this writer suspects will be an opening round in a series of related articles, the NY Times writers Milt Freudenheim and Robert Pear in the December 3 issue contribute a piece entitled "Health hazard: Computers Spilling your History."

The article touches on a vast array of issues, from access within organizations to specific records (e.g., Bill Clinton's surgery) to access by employers to personal health information. Mention is made to the broad support for more health care technology while at the same time raising the very legitimate concerns over what these technologies can do to threaten personal information.

Reference is made to two surveys. The first is the 2005 California Health Care Foundation survey. The second is a recent survey by the Markle Foundation to be released soon and building on a 2005 survey conducted by the same organization.

Other topics mentioned include:

  • Lack of enforcement and limitations of HIPAA
  • Examples of state enforcement where federal enforcement has been less prominent
  • Concerns over recent efforts to pre-empt state consumer protection laws
  • The prominent role privacy may play in the congressional agenda (quoting Reps. Dingel of Michigan and Markey of Massachusetts)
  • Efforts by employers to promote the use of personal health records (Harriet M. Person, IBM's chief privacy officer, is mentioned as a representative of one of "25 companies meeting...to develop a set of principles and best practices ...that would help persuade people that their employers really did not look at private information stored online.")
  • IBM's work with JanLori Goldman and colleagues
  • Mention of Dr. Deborah Peel and PatientPrivacyRights.org

Not mentioned in the current piece is the ambitious effort by AHRQ and others in HHS to examine laws and privacy at the state level. Awarding contracts to 33 states and one territory, this large and complex project is likely to document the prevalence of specific issues across the country. Although these issues are known and well-described by many, the importance of this work may be in the collateral discussions taking place in so many state and regional levels. Focusing on these concerns, it seems, builds a coalition more educated in appropriate use and policies for information technology.

One expects follow-on articles after the Markle release. These articles may place more focus on what can be done today at the local efforts where policy and legal agreements are concerned. The Memphis, MidSouth eHealth Alliance work implementing the Markle Connecting for Health Framework data sharing agreements is but one example.