Dr. Peel is right!
Because the proposed rule on "meaningful use" doesn't specify that consumers and patients should have control over their personal health information, billions of stimulus dollars will be wasted to purchase obsolete, unethical "clunkers" and worse. My experiences, as a former in-house data administration consultant with the Wisconsin Department of Health Services (DHS) and current member of the U.S. Health Information Technology Standards Panel (HITSP), confirm her observations and expectations of wasted money for the future.
Wisconsin's DHS is slated this year to receive over nine million dollars from ONC to plan for health information exchanges (HIEs). Wisconsin then expects to receive eighty or so million dollars for related HIE projects over the next few years. A request for information (RFI) for the DHS Long Term Care Infrastructure HIE project was released in August 2009. DHS has indicated that it will likely release a request for proposal (RFP) for the infrastructure project in 2010.
I live in the Village of McFarland, located just outside Madison, and have been a volunteer data entry clerk for McFarland's Senior Outreach Program since August 2007. My duties involve data entry of the personal health information of individuals and nutritional risk self assessments into the Social Assistance Management System (SAMS). I also enter the number of meals that they eat during a month. The information is collected from participants on paper forms. Being elderly or disabled are the basic eligibility criteria for the programs. I participate in the congregate meal program and complete the same forms as others do but I then enter my personal health information into the system, myself.
From 1998 until 2005, when the unit was disbanded due to budget constraints, I held the position of data administration consultant for DHS' Center for Uniformity, Security and Privacy (CUSP). CUSP's mission was primarily driven by two federal laws enacted in 1996. The first was the Clinger-Cohen Act having to do with the Federal Enterprise Architecture (FEA) and the second was the Health Insurance Portability and Accountability Act (HIPAA).
During that period, I participated in HIPAA standards development as a public sector representative to HL7 and as a participant in the HIPAA Metadata Registry Coalition and United States Healthcare Information Knowledgebase (USHIK). I was a beta tester of MetaPro sponsored by the EPA and the then Health Care Financing Administration (HCFA). MetaPro was a distributable metadata registry based on the ANSI X3.825 Metamodel for the Management of Sharable Data and ISO/IEC 11179 Specification and Standardization of Data Elements. I was the eForms coordinator for the Department, the primary staff person for the Department's Data Stewardship Council and development of the Common Core Data Standards that it adopted. I maintained the HIPAA Now! Website and provided consultation to IT projects on data security, privacy, and quality.
Because the proposed rule on "meaningful use" doesn't specify that consumers and patients should have control over their personal health information, billions of stimulus dollars will be wasted to purchase obsolete, unethical "clunkers" and worse. My experiences, as a former in-house data administration consultant with the Wisconsin Department of Health Services (DHS) and current member of the U.S. Health Information Technology Standards Panel (HITSP), confirm her observations and expectations of wasted money for the future.
Wisconsin's DHS is slated this year to receive over nine million dollars from ONC to plan for health information exchanges (HIEs). Wisconsin then expects to receive eighty or so million dollars for related HIE projects over the next few years. A request for information (RFI) for the DHS Long Term Care Infrastructure HIE project was released in August 2009. DHS has indicated that it will likely release a request for proposal (RFP) for the infrastructure project in 2010.
I live in the Village of McFarland, located just outside Madison, and have been a volunteer data entry clerk for McFarland's Senior Outreach Program since August 2007. My duties involve data entry of the personal health information of individuals and nutritional risk self assessments into the Social Assistance Management System (SAMS). I also enter the number of meals that they eat during a month. The information is collected from participants on paper forms. Being elderly or disabled are the basic eligibility criteria for the programs. I participate in the congregate meal program and complete the same forms as others do but I then enter my personal health information into the system, myself.
From 1998 until 2005, when the unit was disbanded due to budget constraints, I held the position of data administration consultant for DHS' Center for Uniformity, Security and Privacy (CUSP). CUSP's mission was primarily driven by two federal laws enacted in 1996. The first was the Clinger-Cohen Act having to do with the Federal Enterprise Architecture (FEA) and the second was the Health Insurance Portability and Accountability Act (HIPAA).
During that period, I participated in HIPAA standards development as a public sector representative to HL7 and as a participant in the HIPAA Metadata Registry Coalition and United States Healthcare Information Knowledgebase (USHIK). I was a beta tester of MetaPro sponsored by the EPA and the then Health Care Financing Administration (HCFA). MetaPro was a distributable metadata registry based on the ANSI X3.825 Metamodel for the Management of Sharable Data and ISO/IEC 11179 Specification and Standardization of Data Elements. I was the eForms coordinator for the Department, the primary staff person for the Department's Data Stewardship Council and development of the Common Core Data Standards that it adopted. I maintained the HIPAA Now! Website and provided consultation to IT projects on data security, privacy, and quality.
During 2002 I provided consultation to Wisconsin's Mental Health Data Infrastructure Grant (DIG) Project and developed a data quality protocol to measure the quality of mental health data in the Department's data warehouse. At that time I analyzed the data included in all mental health fields for over 139,000 individuals collected through the Human Services Reporting System (HSRS). The mental health module in HSRS and associated fields in the data warehouse organized each psychiatric diagnosis into five levels (axes) relating to different aspects of disorder or disability.
Wisconsin is the only state to configure SAMS so as to display individuals' most sensitive information in “user fields” on the summary screen (copy attached). Information can be directly entered and edited from the summary screen and since “user fields” are not regular data base fields, no audit trail is created or maintained. Entries in the “user fields” can be made by any person with access to an individual’s record and information from other databases or data warehouses can be entered without a person’s knowledge or approval.
Among the most sensitive “user fields” available for entry are those related to mental health diagnoses. Although the data entries that I make are limited to demographic information and assessments of nutritional health, ADLs and IADLs, others with access to the system can make entries with regard to the most sensitive personal information.
The group of five diagnostic fields, shown on the attached summary screen likely relate to the multi axial system of the Diagnostic and Statistical Manual of Mental Disorders (DSM). The mental health module in the Human Services Reporting System (HSRS) and associated fields in the MEDS data warehouse organizes each psychiatric diagnosis into five levels (axes) relating to different aspects of disorder or disability. A definition can be found at: http://tiny.cc/x3JZ5
As I mentioned above, I recognize the five diagnostic fields being included in the MEDS data warehouse from my work on data quality related to the Data Infrastructure Grant (DIG) in 2002. Concern during that period was expressed by counties as shown in minutes from a 2003 meeting of the Wisconsin Council on Mental Health: http://tiny.cc/nbP7T . Additional “user fields” provide drop downs for various diagnoses including the one for depression that I’ve shown on the attached summary screen. The linkages between physical and mental health is explored in the Behavioral Risk Factor Survey: http://tiny.cc/nyo9J
When a data entry operator enters information for a new participant, the SAMS application executes a broad search that brings back a listing of all participants, from communities across the state, having similar sounding names. The summary screens from all matching records, with the most sensitive information plainly visible, can be viewed without actually opening records by any one with access rights to the SAMS system. There does not appear to be an audit trail relating to who views records. Concerns expressed in 2003 by the Wisconsin Council on Mental Health appear to have been well founded
Currently the State Data Infrastructure Coordinating Center (SDICC) is discussing participation of states’ mental health units in health information exchanges (HIEs) being developed by states under the Health Information Technology for Economic and Clinical Health (HITECH) Act. HITECH was enacted as part of the American Recovery and Reinvestment Act (ARRA) of 2009 commonly referred to as the Stimulus Bill. A summary of the October 2009 SDICC regional calls can be found at: http://tiny.cc/k8nRV .
Wisconsin is the only state to configure SAMS so as to display individuals' most sensitive information in “user fields” on the summary screen (copy attached). Information can be directly entered and edited from the summary screen and since “user fields” are not regular data base fields, no audit trail is created or maintained. Entries in the “user fields” can be made by any person with access to an individual’s record and information from other databases or data warehouses can be entered without a person’s knowledge or approval.
Among the most sensitive “user fields” available for entry are those related to mental health diagnoses. Although the data entries that I make are limited to demographic information and assessments of nutritional health, ADLs and IADLs, others with access to the system can make entries with regard to the most sensitive personal information.
The group of five diagnostic fields, shown on the attached summary screen likely relate to the multi axial system of the Diagnostic and Statistical Manual of Mental Disorders (DSM). The mental health module in the Human Services Reporting System (HSRS) and associated fields in the MEDS data warehouse organizes each psychiatric diagnosis into five levels (axes) relating to different aspects of disorder or disability. A definition can be found at: http://tiny.cc/x3JZ5
As I mentioned above, I recognize the five diagnostic fields being included in the MEDS data warehouse from my work on data quality related to the Data Infrastructure Grant (DIG) in 2002. Concern during that period was expressed by counties as shown in minutes from a 2003 meeting of the Wisconsin Council on Mental Health: http://tiny.cc/nbP7T . Additional “user fields” provide drop downs for various diagnoses including the one for depression that I’ve shown on the attached summary screen. The linkages between physical and mental health is explored in the Behavioral Risk Factor Survey: http://tiny.cc/nyo9J
When a data entry operator enters information for a new participant, the SAMS application executes a broad search that brings back a listing of all participants, from communities across the state, having similar sounding names. The summary screens from all matching records, with the most sensitive information plainly visible, can be viewed without actually opening records by any one with access rights to the SAMS system. There does not appear to be an audit trail relating to who views records. Concerns expressed in 2003 by the Wisconsin Council on Mental Health appear to have been well founded
Currently the State Data Infrastructure Coordinating Center (SDICC) is discussing participation of states’ mental health units in health information exchanges (HIEs) being developed by states under the Health Information Technology for Economic and Clinical Health (HITECH) Act. HITECH was enacted as part of the American Recovery and Reinvestment Act (ARRA) of 2009 commonly referred to as the Stimulus Bill. A summary of the October 2009 SDICC regional calls can be found at: http://tiny.cc/k8nRV .
Because the RFI for the Long Term Care Infrastructure HIE Project involves connecting all systems including the DHS data warehouse, the privacy of many of Wisconsin's elderly and disabled will be systemically breached by technology "wrongfully used".
Dr. Peel is right!
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