DSHS Legislative Initiatives Proposal
For the 81st Legislative Session
Data Sharing and Access to Identified Center for Health Statistics Data
Intent:
The intent of the legislation is to allow the sharing of data, linking of records, and
utilizing of datasets within the Health and Human Services (HHS) enterprise to address
questions and allow research related to public policy and public health planning.
Background Information:
Currently programs across the Department of State Health Services (DSHS) and HHS
enterprise agencies do not have the authority to link to the datasets created under the
Health and Safety Code, Chapter 108, using individual level identifiers such as name,
date of birth, address and social security numbers. For example, the inpatient and
outpatient data collected under Chapter 108 by the DSHS Center for Health Statistics
(CHS) cannot be linked with other DSHS data sets such as cancer and birth defects
registry data because of statutory barriers. These barriers create increased work efforts for
providers and state staff due to duplication of data collection and quality control efforts.
Nationwide, disease registries (e.g. cancer, birth defects) utilize hospital discharge
databases with identifiers as part of their surveillance systems.
CHS Data Confidentiality Restrictions
DSHS programs have made multiple requests to obtain patient identifiers collected under
Chapter 108. These programs wanted to use this information to enhance disease/health
condition surveillance, decrease the burden on disease/health condition reporting from
external stakeholders, avoid duplication of effort within and outside DSHS, and to better
satisfy research requests, including two studies funded by entities such as the National
Cancer Institute. Attempts by HHS Enterprise programs to access these data have been
denied through rulings from the Office of the Attorney General since at least 2003.
Until the statute, primarily in Section 108.013, is changed, the ability to share data
throughout the programs within the HHSC Enterprise will not be possible
Confidentiality:
Provisions for maintaining confidentiality would be maintained according to the
standards established in Chapter 108 and other relevant legislation, and would be
exempted from public records access under the Public Information Act, Government
Code, Chapter 552. Individual level identifiers would only be used for matching purposes
and creating integrated data files across programs. Access to individual level patient
information would be restricted to select staff, and use would be allowed only for limited
public health purposes. These purposes would include allowing the DSHS programs to
use identifiable data to approach the reporting provider for further information.
Any projects that involve data matching for research purposes will have to be approved
by the Agency Institutional Review Board and/or the Scientific Review Panel.
Description:
Proposal of new or modification of existing language in Chapter 108, Health and Safety
Code, would enable access to fully identified data sets collected by the CHS, for use in
accomplishing DSHS public health responsibilities, including surveillance and
epidemiological studies. No identified information would be released outside of the HHS
Enterprise, except under the provisions of Chapter 108. However, HHS programs would
be authorized to create de-identified public use linked data sets for use in research and
public health efforts. These files might be at individual record level, to facilitate analysis,
but would have all identifying information removed and be in accordance with all
confidentiality constraints as specified by the programs supplying data. Follow-back to
facilities, patients, and/or physicians identified through data linkage would be authorized
through the DSHS Institutional Review Board and/or the Scientific Review Panel only
for public health purposes as allowed under Chapter 108. This legislative initiative would
entail no cost to implement.
Risks/Benefits:
Risks:
Possible risks are minimal since no identified data are proposed for release to outside
entities; the HHS programs that may access the personal identifiers are authorized to
collect and use protected health information to accomplish their mission.
Benefits to Data Sharing:
This change in legislation that would allow data sharing and linkage with data collected
by the department under Chapter 108 would provide HHS Enterprise programs the
following significant benefits:
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Improve public health capacity by allowing tracking of patients across services
offered by different programs
Enhance disease/health condition surveillance;
Decrease the burden on disease/health condition reporting from external
stakeholders;
Avoid duplication of effort within and outside HHS agencies;
Reduce costs to HHS programs for case collection and data quality/validation
activities;
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Improve quality assurance (verification of events) of the data;
Enable certain research requests related to health outcomes and cost of care that
are not currently feasible for Texas data;
Improve program performance by making available enhanced business
intelligence;
Refine outcome impact assessment (e.g., measure 30-day mortality) by linking
health care facility data to vital statistics data (death records) or birth defects to
health care system coverage with transfers;
Enhance capacity for cross-program complex analyses, such as looking at quality
of care when transitioning from hospital setting to a nursing home.
Stakeholder impact and involvement:
Affected stakeholders include:
 HHS programs such as the CHS, Texas Cancer Registry, Birth Defects
Surveillance, Injury Surveillance, HIV/STD Surveillance, and HHSC Medicaid
program; external stakeholders such as CHS and cancer registry data providers
(hospitals, ambulatory surgery centers, free-standing imaging centers and other
health care facilities listed in Chapter 108), academic research institutions, public
health planners, health care policy specialists, non-profit groups, Centers for
Disease Control and Prevention.
Anticipated fiscal impact (in general terms, not a detailed fiscal note), including
fees:
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This legislative initiative would entail no additional cost to implement. Potential
cost savings for programs such as the HHS data programs, that could benefit from
access to the data include :
o Reducing case finding/audit/data collection costs; and
o Supplementing critical data fields without addition expense, such as
primary payer information for cost of care/access to care/health outcomes
research.
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