Tuesday, October 11, 2011

Data Segmentation - now I know where the term comes from

During the kick off meeting for the new S&I Framework project on "Data Segmentation" I found out why this concept of Patient Privacy Policy and Controls keeps being called "Data Segmentation". The key is a project funded by HHS a year ago that resulted in a white paper on September 29, 2010 titled "DATA SEGMENTATION IN ELECTRONIC HEALTH INFORMATION EXCHANGE: POLICY CONSIDERATIONS AND ANALYSIS" (Sorry for the shouting, they actually used all uppercase). This white paper was authored and presented at the S&I Framework "Data Segmentation" kickoff meeting by Melissa M. Goldstein, JD. Melissa did a fantastic job of explaining the content, and I now understand why the scope is what it is. I simply wish that the simplification of the subject would have been from later in the title "Policy Considerations".

Note that these resources are on the HHS site on Privacy and Security

The executive summary indicates

This discussion raises the issue of data segmentation, which we define for the purposes of
this paper as the process of sequestering from capture, access or view certain data
elements that are perceived by a legal entity, institution, organization, or individual as
being undesirable to share.  This whitepaper explores key components of data
segmentation, circumstances for its use, associated benefits and challenges, various
applied approaches, and the current legal environment shaping these endeavors.  

Data segmentation in the health care context can support granularity of choice with
respect to the following:
  • What specific data are eligible for exchange (from individual data elements to defined categories of data, such as all behavioral health records); 
  • Who has access to the information (from individual providers to other health care entities); 
  • Under what circumstances access is granted (e.g., emergency access, treatment, etc.); and  
  • For what period of time access is granted (e.g., unlimited, one-time access, etc.)  
The executive summary concludes
As such, it will be important for policy makers to consider various approaches to moving
not only the discussion, but also the meaningful realization of data segmentation, 
forward.  Data segmentation efforts to date have explored a variety of approaches that
show some early, but limited, success.  To accelerate this forward momentum, we would
suggest, among other pursuits, the following:
 
  • Build a Bridge to Greater Autonomy: Rely on policy levers that will move us closer to the goal of supporting individual, subjective preferences for information management;  
  • Provide Direct Financial and Other Support to Stimulate Change: Consider various means of supporting  the development of segmentation-enabling processes and technologies; and  
  •  Generate Evidence: Given the significance of the transformation from paper to electronic means of data capture and sharing, establish and execute on a set of updated research priorities.   
We support the idea of casting a wide net in search of appropriate means of providing
patients more granular control over the exchange and use of their identifiable health
information, and point to the efforts underway in other countries as evidence that this is a
worthwhile endeavor.  While still a challenge, data segmentation holds promise for
accomplishing the ultimate goal of accommodating the needs and desires of the multiple
stakeholders engaged in the electronic exchange of health information.  
The report is very extensive.