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Data Suppression Strategies in STD Programs Automated Suppression Software What is it and how Data Suppression Strategies in STD Programs Automated Suppression Software What is it and how does it work? Jeff Stover Division of Disease Prevention Virginia Department of Health March 13, 2008

Got data? Great……. . now what? Got data? Great……. . now what?

Overview • JPHMP article – Why developed? – How we assessed suppression strategies – Overview • JPHMP article – Why developed? – How we assessed suppression strategies – Discussion of findings • Automated suppression software – Discussion – Demonstration – Limitations • Where, oh where, are the resources?

 • OASIS data confidentiality efforts – Quasi-focus on GIS issues – GIS survey • OASIS data confidentiality efforts – Quasi-focus on GIS issues – GIS survey developed including: • Numerator rule questions • Confidentiality guidance • Dissemination strategies

GIS Survey Numerator Rule Results Rule Defined Numerator Rule Total # of Project Areas GIS Survey Numerator Rule Results Rule Defined Numerator Rule Total # of Project Areas % Rule of 0 1 1 4% Rule of 3 0 -2 0 0% 1 -2 2 8% 0 -3 0 0% 1 -3 0 0% Total 2 8% Rule of 5 0 -5 4 16% 1 -4 5 20% 0 -4 1 4% Total 14 56% Rule of 6 0 -6 1 4% Rule of 10 N/A 1 4% 19 76% Total # using a rule Other 5 20% No Rule N/A 1 4% Total Responded 25 100%

 • How can we assess usage and variation of numerator rules in STD • How can we assess usage and variation of numerator rules in STD programs? – HHS - Office on Women’s Health • Quick Health Data Online – Formally known as: » National Women’s Health Indicators Database – Routine request for STIs at state and county levels by race/ethnicity and sex.

Data Suppression Strategies Used During Surveillance Data Release by Sexually Transmitted Disease Prevention Programs Data Suppression Strategies Used During Surveillance Data Release by Sexually Transmitted Disease Prevention Programs • Objective: – Investigate data suppression or statistical disclosure limitation (DL) practices used during STI surveillance data release

Data Suppression Strategies Used During Surveillance Data Release by Sexually Transmitted Disease Prevention Programs Data Suppression Strategies Used During Surveillance Data Release by Sexually Transmitted Disease Prevention Programs • Methods: – Use Quick Health Data Online to classify DL strategies from state health departments – Mean STD incidence rates compared among DL states and non-DL states

http: //www. womenshealth. gov/quickhealthdata/ http: //www. womenshealth. gov/quickhealthdata/

http: //www. healthstatus 2010. com/owh/select_variables. aspx http: //www. healthstatus 2010. com/owh/select_variables. aspx

Distribution of Primary Types of Cell Suppression Used by STD Prevention Programs, 2003 -2005. Distribution of Primary Types of Cell Suppression Used by STD Prevention Programs, 2003 -2005. District of Columbia, New York City (No Suppression) Not Shown.

Data Supression Rule Classification Schema Used by STD Prevention Programs During Data Release, 2003 Data Supression Rule Classification Schema Used by STD Prevention Programs During Data Release, 2003 -2005.

Data Suppression Strategies Used During Surveillance Data Release by Sexually Transmitted Disease Prevention Programs Data Suppression Strategies Used During Surveillance Data Release by Sexually Transmitted Disease Prevention Programs • Results: – 5 types of DL identified – 15 states did not suppress data – At least 13 unique suppression strategies – STI rates were higher for non-DL states than DL states – No relationship between integrated program DL versus non-integrated programs – States showed signs of DL inconsistency over time

Data Suppression Strategies Used During Surveillance Data Release by Sexually Transmitted Disease Prevention Programs Data Suppression Strategies Used During Surveillance Data Release by Sexually Transmitted Disease Prevention Programs PC Delcher, KT Edwards, JA Stover, LM Newman, SL Groseclose, DM Rajnik Available as online article from: Journal of Public Health Management and Practice March-April 2008, 14(1), E 1 -E 8. http: //www. jphmp. com/pt/re/jphmp/home. htm

Overview • Manuscript – Why developed? – How we assessed suppression strategies – discussion Overview • Manuscript – Why developed? – How we assessed suppression strategies – discussion of findings • Automated suppression software – Description – Demonstration – Limitations • Where, oh where, are the resources?

Software for tabular data protection Joe Fred Gonzalez Jr and Lawrence H. Cox Centers Software for tabular data protection Joe Fred Gonzalez Jr and Lawrence H. Cox Centers for Disease Control and Prevention; National Center for Health Statistics; Office of Research . and Methodology; Hyattsville; MD 20782; U. S. A Available as online article from: STATISTICS IN MEDICINE Statist. Med. 2005; 24: 659– 669 www. interscience. wiley. com

http: //www. samsi. info/200506/ndhs/workinggroup/dc/Papers/Gonzalez. Cox 2005. pdf http: //www. samsi. info/200506/ndhs/workinggroup/dc/Papers/Gonzalez. Cox 2005. pdf

- National Center for Health Statistics confidentiality protection utility for tables (NCHSCPUT) • NCHS - National Center for Health Statistics confidentiality protection utility for tables (NCHSCPUT) • NCHS sponsored the development of disclosure limitation software for twodimensional tables • Opt. Tek Systems, Inc. developed software • Functions: • cell suppression • minimum-distance controlled rounding • unbiased controlled rounding • controlled rounding subject to subtotal constraints • controlled tabular adjustment • This is the first time these methods have been implemented in a common mathematical and software framework. http: //www. samsi. info/200506/ndhs/workinggroup/dc/Papers/Gonzalez. Cox 2005. pdf

NCHSCPUT Main Menu NCHSCPUT Main Menu

Table import screen Table import screen

Viewing the suppressed data table. Blue cells are primary suppressions while red cells are Viewing the suppressed data table. Blue cells are primary suppressions while red cells are complementary suppressions.

Demonstration Demonstration

confidentiality protection utility for tables (NCHSCPUT) • Limits: – Available for free, but no confidentiality protection utility for tables (NCHSCPUT) • Limits: – Available for free, but no technical support • Software Help file exists • additional instructions may be available upon request to the author(s) – Numerator Rule ( < 5 is lowest threshold) – performing some procedures more than once on the same input file may generate different outputs – Import file specifics: • No non-numeric values • Need to replace “blank” and “ 0” values with “ 1” – Export file specifics: • “PS” and “CS” prefix imbedded in final table cell

Overview • Manuscript – Why developed? – How we assessed suppression strategies – discussion Overview • Manuscript – Why developed? – How we assessed suppression strategies – discussion of findings • Automated suppression software – Description – Demonstration – Limitations • Where, oh where, are the resources?

Statistical Resources Date Title Format Length Phone Source Internet 67 pages None given http: Statistical Resources Date Title Format Length Phone Source Internet 67 pages None given http: //www. fcsm. gov/workingpapers/sw 2. html Contact location 1978 Statistical Policy Working Paper 2 - Report on Statistical Disclosure and Disclosure- Avoidance Techniques 1983 Access to Tax Records for Statistical Purposes Internet 7 pages None given http: //www. amstat. org/sections/sr ms/Proceedings/y 1983 f. html Oliver H. Wilson and William J. Smith, Jr. , Internal Revenue Service 1984 CDC Confidentiality Staff Manual Printed text 42 pages None given dxz [email protected] gov (Miatta Dennis) 1986 Protection of Taxpayer confidentiality with Respect to the Tax model Internet 7 pages None given http: //www. amstat. org/sections/sr ms/Proceedings/papers/1986_070. pdf Strudler, M; Lock, H; Scheuren, O and F; Internal Revenue Service 1994 Statistical Policy Working Group Paper 22 - Report on Statistical Disclosure Limitation Methodology Internet 243 pages None given http: //www. fcsm. gov/workingpapers/spwp 22. html Maria E. Gonzalez, Chair Office of Management and Budget; Federal Committee on Statistical Methodology 1996 Data Release Guidelines of CSTE for NPHSS Printed text 3 pages None given Recommendation of the Secretary of Health and Human Services, pursuant to section 264 of the Health Insurance Portability and Accountability Act of 1996 http: //aspe. os. dhhs. gov/admnsimp/pvcrec 0. h tm 1997 Confidentiality of Individually-Identifiable Health Information Printed text 79 pages http: //www. fcsm. gov/

Statistical Resources 1998 1999 Guidelines for HIV/AIDS Surveillance Appendix C: Security and Confidentiality Printed Statistical Resources 1998 1999 Guidelines for HIV/AIDS Surveillance Appendix C: Security and Confidentiality Printed text 6 pages Checklist on Disclosure Potential of Proposed Data Releases Printed text 46 pages Geographic Information Systems and Public Health: Mapping the Future Geographically Masking Health Data to Preserve Confidentiality Model State Public Health Privacy Act None given Division of HIV/AIDS Prevention - Surveillance and Epidemiology National Center for HIV, STD, and TB Prevention CDC None given Interagency Confidentiality and data Access Group An Interest Group of the Federal Committee on Statistical Methodology http: //www. fcsm. gov/committees/cdac/check list_799. doc http: //www. healthgisli. com/library/phr/maintext. htm http: //www. uiowa. edu/~geog/faculty/armstro ng/Masking. pdf Printed text 14 pages None given Public Health Reports 1999; 114: 359 -373; Thomas Richards MD, Charles Croner Ph. D, Gerard Rushton Ph. D, Carol Brown MS, Littleton Fowler DDS Printed text 29 pages None given Statistics in Medicine; Statist. Med. 18, 497 -525; Marc Armstrong; Gerard Rushton; Dale Zimmerman None given Members of the Privacy Law Advisory Committee- Lawrence O. Gostin, Professor of Law Georgetown University Law Center; James G. Hodge, Jr. , Adjunct Professor of Law Georgetown University Law Center Printed text 59 pages None given www. critpath. org/msphpa/modellaw 5. pdf

Statistical Resources 1999 Checklist on Disclosure Potential of Proposed Data Releases 2001 Privacy in Statistical Resources 1999 Checklist on Disclosure Potential of Proposed Data Releases 2001 Privacy in the Information Age A Guide for Sharing Crime Maps and Spacial Data 2001 Confidentiality and Data Access Issues Among Federal Agencies 2002 Identifiability in Microdata Files Internet Printed text 46 pages 55 pages Internet None given Internet 7 pages None given Statistical Issues in Interactive Web-based Public Health Data Dissemination Systems Printed text 55 pages 2003 CDC/ATSDR Policy on Releasing and Sharing Data Printed text 2 pages Printed text 18 pages CDC/ATSDR Policy on Releasing and Sharing Data 11 pages 2003 None given (404) 6397240 http: //www. fcsm. gov/committees/c dac/checklist_799. doc United States Department of Justice Office of Justice Programs National Institute of Justice http: //www. fcsm. gov/committees/c dac/brochur 10. pdf http: //www. fcsm. gov/committees/c dac/Ident. CDAC 3. doc http: //www. rand. org/publications/ WR/WR 106. pdf Statistics and Data Management Branch, DSTDP, NCHSTP Office of the Director, Associate Director for Science U. S. Office of Management & Budget; Interagency Confidentiality & Data Access Group www. ojp. jsdoj. gov/nij U. S. Office of Management & Budget; Confidentiality & Data Access Committee & Federal Committee on Statistical Methodology, Confidentiality and Data Access Committee Michael A. Stoto, RAND Health [email protected] org http: //www. cdc. gov/od/ads/pol-385. thm http: //aops-mas-iis/Policy/Doc/policy 385. htm

Statistical Resources 2003 GIS and Privacy 2003 HIV/AIDS Epidemiology Annual Report 2003 2004 Public Statistical Resources 2003 GIS and Privacy 2003 HIV/AIDS Epidemiology Annual Report 2003 2004 Public Health GIS and the Internet STDNet access to STD data via the web Healthy GIS Printed text Spiral bound Printed text 2 pages 48 pages 46 pages 3 pages 8 pages (814) 8639721 (415) 5549050 None given (404) 4983400 (800) 4479778 GIS Resource Document; Stephen Matthews([email protected] psu. edu )Director, GIA Core Population Research Institute; Social Science Research Institute; Pennsylvania State University HIV/AIDS Statistics and Epidemiology Section San Francisco Department of Public health http: //www. pop. psu. edu/giacore/pdfs/gis_rd_03 -51. pdf None given Charles M. Croner, Office of Research & Methodology, National Center for Health Statistics, CDC, Hyattsville, MD 20782; Annual Review of Public Health 24: 57 -82 [email protected] gov http: //www. cdc. gov/nchs/data/gis/GIS_AND_ THE_INTERNET. pdf Statistics and Data Management Branch: NCHSTP Div of STD Prevention; CDC intranet http: //158. 111. 146. 193/stdnet/Data Policies. htm [email protected] gov Health and Human Services Solutions Group of ESRI (Environmental Systems Research Institute) www. esri. com/health

Statistical Resources Procedures for Geomasking to Protect Patient Confidentiality Power. Point 17 pages 2004 Statistical Resources Procedures for Geomasking to Protect Patient Confidentiality Power. Point 17 pages 2004 Security Aspects of Electronic Data Interchange Between a State Health Department and a Hospital Emergency Department. Internet 1 page 2004 The NCHS Staff Manual on Confidentiality Internet 28 pages None given 2004 Towards evidence-based, GIS -driven national spatial health information infrastructure and surveillance services in the United Kingdom Printed text 86 pages None given 2005 CDC-CSTE Intergovernmental Data Release Guidelines Working Group (DRGWG) Report CDC-ATSDR Data Release Guidelines and Procedures for Re-release of State-Provided Data Internet 86 pages 4044986274 Ruth Ann Jajosky DRGWG cochair; raj [email protected] gov http: //www. cdc. gov/od/foia/policies/drgwg. pdf 2005 Confidentiality Issues and Policies Related to the Utilization and Dissemination of Geospatial Data for Public Health Applications (845) 3658988 The Socioeconomic Data and Application Center (SEDAC) Center for International Earth Science Information Network (CIESIN) Columbia University; Meredith Golden, Robert Downs and Kent Davis Packard http: //www. ciesin. columbia. edu/pdf/SEDAC_ Confidentiality. Report. pdf Printed text 71 pages None given Dave Stinchcomb; Email: Stinchc. [email protected] nih. gov; Presented at the ESRI International Health GIS Conference 2004 Journal of Public Health Management and Practice http: //www. cdc. gov/nchs/data/misc /staffmanual 2004. pdf International Journal of Health Geographics 2004, 3: 1; Maged N Kamel Boulos, School for Health, University of Bath, UK http: //gis. esri. com/library/userconf/health 04/pa pers/pap 3012. pdf http: //www. jphmp. com http: //www. cdc. gov/nchs/mail. htm http: //www. ijhealthgeographics. com/content/3/1/1

Statistical Resources 2005 GIS/Geocoding Survey 2005 Is This Clinical Trial Fully Registered? A Statement Statistical Resources 2005 GIS/Geocoding Survey 2005 Is This Clinical Trial Fully Registered? A Statement from the International Committee of Medical Journal Editors 2005 Journal of Public Health Management and Practice Printed text 12 pages 3 pages (804) 8648004 None given (800) 6383030 Internet 2005 Michigan Deparment of Community Health (MDCH) Division of Communicable Disease Data Use Agreement DRAFT Printed text 3 pages 2005 The Challenges and Opportunities of Ethics Printed text 1 pages 2005 Data Release Guidelines of CSTE for NPHSS June 1996 Summary and Interpretation Printed text 3 pages None given (404) 6391801 The Outcomes Assessment through Systems of Integrated Surveillance (OASIS) Project; National GIS Survey; Jennifer Bissette VA Dept of Health, Div. of HIV, STD, and Pharmacy Services The New England Jounal of Medicine National Association of County and City Health Officials (NACCHO) jennifer. [email protected] virginia. gov www. nejm. org http: //www. jphmp. com None given American Jounal of Public Health Bernard M. Dickens, Ph. D, LLD, FRSC, University of Toronto, Ontario Kristine T. Edwards MA, DVM CDC Informatics Intern dxz [email protected] gov (Miatta Dennis)

Statistical Resources 2005 Guidelines for Working With Small Numbers Internet 12 pages None given Statistical Resources 2005 Guidelines for Working With Small Numbers Internet 12 pages None given 2005 STD Confidentiality Data Release Guidelines Background and Summary Printed text 4 pages (404) 6391801 2005 CDC-CSTE Intergovernmental Data Release Guidelines Working Group (DRGWG) Report CDC-ATSDR Data Release Guidelines and Procedures for Re-release of State-Provided Data, January 24, 2005 Summary and Interpretation Printed text 17 pages (404) 6391801 2005 CDC/ATSDR Policy on Releasing and Sharing Data 4/16/2003 Summary and Interpretation Printed text 4 pages (404) 6391801 Confidentiality Power Point 12 slides (404) 3715264 Washington State Dept. of Health; 101 Israel Rd SE, PO Box 47890; Olymipia, WA 98504 -7890; Cathy O'Connor; Email: Cathy. [email protected] wa. gov Kristine T. Edwards MA, DVM CDC Informatics Intern http: //www. doh. wa. gov/Data/Guidelines/Sm all. Numbers. htm dxz [email protected] gov (Miatta Dennis) Kristine T. Edwards MA, DVM CDC Informatics Intern Betsey Dunaway, CDC Confidentiality and Privacy Act Officer http: //intranet. cdc. gov/maso/privacyact/pryta ct. htm http: //intranet. cdc. gov/maso/Confidentiality/c onfmgmt. htm

Statistical Resources Power Point 12 slides (404) 3715264 Betsey Dunaway, CDC Confidentiality and Privacy Statistical Resources Power Point 12 slides (404) 3715264 Betsey Dunaway, CDC Confidentiality and Privacy Act Officer Same as above but those 2 links do not work MS Word 128 pages None given US DHHS PHS NCHSTP CDC None given Producing Public-Use Microdata That Are Analytically Valid and Confidential Printed text 4 pages None given Responsible Conduct of Research Data Management Power. Point 47 slides (770) 4886540 Data Sharing Considerations DRAFT Guidelines for HIV/AIDS Surveillance Security and Confidentiality None given Donna Stroup [email protected] gov [email protected] gov

Jeff Stover, MPH Director, Health & Research Informatics Office of Epidemiology - Division of Jeff Stover, MPH Director, Health & Research Informatics Office of Epidemiology - Division of Disease Prevention Virginia Department of Health Jeff. [email protected] virginia. gov (804) 864 -7961