Privacy, Confidentiality and Data Sharing Committee March 18, 2004.
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Transcript of Privacy, Confidentiality and Data Sharing Committee March 18, 2004.
Privacy, Confidentiality and Data Sharing Committee
March 18, 2004
Background and Mission Formed Dec. 9, 2002
Mission represent public health and health services
research interests on privacy issues
address balancing patient privacy and confidentiality with the need for useful data for public health and research
Focus on priorities related to privacy and data standardization including implementation of the HIPAA privacy rule
Member Organizations CDC/NCHS HRSA AHRQ NAHDO eHealth Initiative California Office of Statewide Health Planning
and Development Workgroup for the Computerization of
Behavioral Health & Human Services Records National Cancer Institute AcademyHealth Fox Systems
Accomplishments
Developing local health privacy case studies under a grant from HRSA
Facilitated public health/health research testimony the National Committee on Vital and Health Statistics‘ Privacy Subcommittee meeting in November
Outcome of this testimony included in a letter with recommendations for the Secretary of DHHS
Local Health Privacy Case Studies
Developing case studies of local health departments to help public health entities determine when and how the HIPAA privacy regulation applies
Interviews with several health departments of various sizes in different states
Washington State case study example
Local Health Privacy Case Studies
Case studies through interviews that asked about: Privacy challenges How challenges were addressed What helped to achieve compliance Barriers to compliance Actions taken to resolve problems Resources used Outcomes and consequences to date
Local Health Privacy Case Studies
One example, from Washington State, is available today
King County identified understanding and integrating state law in relation to HIPAA privacy as the biggest challenge
Potential for creating a broader guidance document similar to those created by CDC and NIH
NCVHS Meeting and Testimony
First day focused exclusively on public health concerns/problems with the Privacy regulation
Coordinated testimony provided by NCHS, NAHDO, CSTE, and mental health expert
Due to PDSC assistance in facilitating testimony, NCVHS produced a letter to the Secretary of DHHS that included public health/research recommendations
Future Activity• Complete the case studies under the HRSA
grant• Continue to identify and investigate local
health, public health and health services research privacy issues
• Identify and make available resources to help public health entities with HIPAA privacy
• Plan for development of additional tools, FAQs, and resources to assist privacy compliance efforts
• Continue working with NCVHS to ensure that the privacy rule, while protecting confidentiality, works for public health
Privacy Issues• Barriers to data reporting and data sharing • Burden of accounting for public health and
research disclosures • Issues around hybrid entity status• Application of HIPAA privacy to public health
and other programs within a wholly covered entity that do not perform covered functions or perform multiple functions
• Understanding HIPAA and state law intersections
• Others……?
Committee ChairsJonathan LawniczakDirector, Government RelationsCoalition for Health Services [email protected]
Vicki HohnerSenior ConsultantFox Systems, Inc.Email: [email protected]
Committee Members Marjorie Greenberg, M.A.
CDC/NCHS Hetty Khan, M.S., B.S.N., R.N.
CDC/NCHS Sally Klein, RN, MBA
Fox Systems, Inc. Starla Ledbetter, M.H.S.A., R.H.I.A
California Office of Statewide Health Planning and Development
Janet MarchibrodaeHealth Initiative
Beverly Meadows, M.S., R.N.National Institutes of HealthNational Cancer Institute
Barbara Rudolph, Ph.D.National Association of Health Data Organizations
Committee Members Anne Ryan, R.N.
National Institutes of HealthNational Cancer InstituteNational Association of Health Data Organizations
Carol Stocks, R.N., M.H.S.A.Agency for Healthcare Research and Quality (AHRQ)
Walter Suarez, M.D., M.P.H.Midwest Center for HIPAA EducationNational Association of Health Data Organizations
Jessica Townsend, M.P.H.Health Resources & Services Administration
Dorothy Webman, D.S.W.Workgroup for the Computerization of Behavioral Health & Human Services Records
Michelle Williamson, B.S., B.S.N., R.N.CDC/NCHS
