1. Privacy, Confidentiality and Data Sharing Committee March 18, 2004

2. 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

3. 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

4. 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

5. 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

6. 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

7. 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

8. 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

9. 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

10. 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……?

11. Committee Chairs Jonathan Lawniczak Director, Government Relations Coalition for Health Services Research Jonathan.Lawniczak@academyhealth.org Vicki Hohner Senior Consultant Fox Systems, Inc. Email: vicki.hohner@foxsys.com

12. 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 Marchibroda eHealth Initiative Beverly Meadows, M.S., R.N. National Institutes of Health National Cancer Institute Barbara Rudolph, Ph.D. National Association of Health Data Organizations

13. Committee Members 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) Walter Suarez, M.D., M.P.H. Midwest Center for HIPAA Education National 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