Privacy, Confidentiality and Data Sharing Committee May 24, 2005

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  NIH  HRSA  AHRQ  NAHDO  eHealth Initiative  CA Office of Statewide Health Planning & Development  State and local health departments in KS, IL, TX, OH, OK, NE  Workgroup for the Computerization of Behavioral Health & Human Services Records  National Cancer Institute  Midwest Center for HIPAA Education  AcademyHealth  Fox Systems

Accomplishments Finalized local health privacy case studies under a grant from HRSA; most posted Revisited privacy committee function and role Expanded role to include security Participate in ongoing national efforts regarding privacy

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 health departments of various sizes in Washington State, New Jersey, North Carolina Potential for creating a broader guidance document similar to those created by CDC and NIH

Revise Privacy Committee Role Proposal to transition to a leadership forum to create a public sector privacy network GOALS discuss, investigate, and propose solutions to privacy issues collect and create documents, materials, and other resources to aid privacy activities and further privacy practice coordinate, collaborate, and partner with privacy leaders and on key privacy projects evolve privacy standards and practices

CDC White Papers Participate in developing a series of white papers related to privacy and public data resources funded and directed by CDC and NAPHSIS Papers under development: HIPAA Privacy and Discharge Data Sets HIPAA Privacy and Quality Measurement/ Patient Safety Data Sets HIPAA Privacy and Vital Record Data Sets HIPAA Privacy and Medicaid-PH Data Partnerships

In Process Identify and make available resources to help public health entities with HIPAA privacy Revising and updating privacy websites, adding some websites on security Adding individual state sites on privacy Preparing to solicit existing privacy and security materials and tools from Consortium members that can be made publicly available on the Consortium website

Future Activity Continue to identify and investigate local health, public health and health services research privacy issues Gather, review and post privacy materials 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 Chair Vicki Hohner, MBA Senior Consultant Fox Systems, Inc.

Committee Members Bruce Burns Texas Department of Health and Human Services Kathleen Cook Lincoln County Health Department, NE Robert Davis National Association of Health Data Organizations Marjorie Greenberg, M.A. CDC/NCHS Michael C. Jones Illinois Department of Public Health Michael Kassis California Office of Statewide Health Planning and Development

Committee Members Hetty Khan, M.S., B.S.N., R.N. CDC/NCHS Sally Klein, RN, MBA Fox Systems, Inc. Jonathan Lawniczak Coalition for Health Services Research Starla Ledbetter, M.H.S.A., R.H.I.A California Office of Statewide Health Planning and Development Denise Love National Association of Health Data Organizations Janet Marchibroda eHealth Initiative

Committee Members Beverly Meadows, M.S., R.N. National Institutes of Health National Cancer Institute Anna Orlova Public Health Data Standards Consortium Derek Pate Oklahoma Department of Health Barbara Rudolph, Ph.D. National Association of Health Data Organizations Anne Ryan, R.N. National Institutes of Health National Cancer Institute National Association of Health Data Organizations Carol Stocks, R.N., M.H.S.A. Agency for Healthcare Research and Quality (AHRQ)

Committee Members Walter Suarez, M.D., M.P.H. Midwest Center for HIPAA Education National Association of Health Data Organizations Jonathan Teague California Office of Statewide Health Planning and Development Socrates Tuch Ohio Department of Health 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