Legacy Data and Electronic Health Records (EHRs)

I intended to raise the topic of patient consent to use legacy data housed in data warehouses or other programs during the comments portion of the HIT Policy meeting held on Friday, September 18th. Unfortunately, I must have been pushing the wrong buttons on my phone as the moderator couldn’t see any indication of persons wishing to comment by phone.

For many years, health information of seniors and disabled has been collected by state and local aging units and maintained in electronic records. The leading system, used by the majority of aging units is the Social Assistance Management System (SAMS). SAMS is the flagship application of Harmony Inc. and accessed through its proprietary portal: AgingNetwork.com.

Most states provide information concerning electronic information systems utilized for aging programs on their official Websites. New Mexico’s registration form for aging programs provides a typical example of health data that is included in individuals’ electronic records. New Mexico’s form contains person specific assessments related to behavioral risk factors, activities of daily living, instrumental activities of daily living, medications and drug allergies. New Mexico’s registration form can be seen at:
http://www.nmaging.state.nm.us/NewMAPIS/SAMS%202000_Registration-AssmenttFormFill_v1.1_04Dec08.doc

Since 2002, Wisconsin’s aging units have also utilized SAMS, but do so in ways unlike those of any other state. Copies of registration forms are not available on any official state or local governmental Website. For a considerable period of time, up until May 9, 2008, data entry instructions were available only on the personally owned Website of the SAMS administrator. Rather than state authorized group email services (as open records) for all contacts, Wisconsin’s State Unit on Aging (SUA) utilizes Yahoo!Groups to communicate with select persons in local aging units.

Typically, SAMS records are first opened on individuals who participate in congregate meal programs operated by senior centers or senior outreach programs. In order to minimize duplicate sets of records for the same individual, whenever a new record is initiated, the SAMS application automatically queries the whole Wisconsin data base for similar sounding names. All records returned, from locations throughout Wisconsin, are available for viewing without the access being recorded.

Unlike any other state, Wisconsin enters the health information of seniors and disabled in serial fashion. While individuals are told that the information they are being asked to provide is needed to comply with federal reporting requirements, they are not told that the electronic record being established will be used to track their future participation in programs and cannot be deleted. They are not told that Wisconsin has added “user fields” including five mental health diagnostic fields and a list of medical problems with information that can be added to a record without a person’s knowledge by someone at a later date.

The five diagnostic fields relate to the multi axial system of the Diagnostic and Statistical Manual of Mental Disorders (DSM). The DSM organizes each psychiatric diagnosis into five levels (axes) relating to different aspects of disorder or disability:

Axis I: clinical disorders, including major mental disorders, as well as developmental and learning disorders

Axis II: underlying pervasive or personality conditions, as well as mental retardation

Axis III: acute medical conditions and physical disorders

Axis IV: psychosocial and environment factors contributing to the disorder

Axis V: Global assessment of functioning or children's global assessment scale for children and teens under the age of 18