Improving Regional Infertility Prevention Project (IPP) Data Quality and Completeness 2008 National STD Prevention Conference Chicago, Illinois March 12, 2008 Rabins C1, Holmes S1, Cash S2, Region V IPP Advisory Committee3 1STD Program, Illinois Department of Public Health, Springfield, IL, USA 2,3 Health Care Education and Training, Carmel, IN, USA

Background - 1 Goal of Region V* Infertility Prevention Project (IPP) Reduce Prevalence of Chlamydia and Resultant Complications By Screening and Treating At-Risk Persons * Illinois, Indiana, Michigan, Minnesota, Ohio and Wisconsin

Background – 2 High Quality and Complete IPP Data are Essential For: Determining What Populations to Screen Conducting Program Evaluation and Improvement Allocating Resources Effectively Identifying and Reducing Health Disparities

Background – 3 Anecdotal Data Indicated That Date Completeness and Quality for RVIPP Screening Data Improved From 2002 to 2006

Objective Determine Where and How Rate of Missing/Unknown Variables for Key Demographic Variables Improved Determine Best Practices for Achieving High Rates of Data Completeness and Quality

Methods 2002 to 2006 RVIPP Screening Data Were Analyzed By Region, State and By Demographic Element to Determine Rate of Missing/Unknown Key Variables States With High Data Completeness Rates Were Contacted to Determine Best Practices and States With Low Rates Were Contacted to Identify Barriers

Results

Improvement in RVIPP Rate of Unknown Data Demographics All Screening Sites, 2002 and 2006 Percent Unknown Number of Unknowns 2006 Percent Change 2002 to Sex 0.4% 1,890 0.1% 761 - 59.7% Age 0.3% 1,553 0.2% 907 - 41.6% Race 15.6% 82,872 7.8% 42,108 - 49.2% Ethnicity 24.2% 128,736 17.0% 91,765 - 28.7% Despite 1.6% increase in total IPP Reported Tests, Data Completeness Improved Significantly 2002 N = 532,033 2006 N = 540,769

Changes In Unknown Race By RVIPP State, 2002 and 2006 Percent Race Unknown 2006 Unknown Race Records Total IPP Percent Total 2006 RVIPP Race Unknown Illinois* 6.8% 0.6% 1,105 195,948 2.6% Indiana 0.4% 8.6% 5,479 63,758 13.0% Michigan 42.2% 16.1% 16,115 99,853 38.3% Minnesota 5.3% 8.0% 2,246 28,138 Ohio* 0.1% 43 78,602 Wisconsin 30.6% 23.0% 17,120 74,470 40.7% RVIPP 15.6% 7.8% 42,108 540,769 100.0% 2 States Michigan and Wisconsin accounted for 79% of all unknown race * State Uses Active QA Process

Changes In Unknown Ethnicity By RVIPP State, 2002 and 2006 Percent Ethnicity Unknown 2006 Percent Ethnicity Records Total IPP Records** Total 2006 RVIPP Ethnicity Unknowns Illinois* 11.2% 0.6% 1,204 195,948** 1.3% Indiana 1.8% 5.3% 3,362 63,758 3.7% Michigan 46.1% 65.0% 64,917 99,853 70.7% Minnesota 7.8% 1.9% 526 28,138 Ohio* 0.1% 60 78,602 Wisconsin 52.0% 29.3% 21,796 74,470 23.7% RVIPP 24.0% 17.0% 91,865 540,769 100.0% Note increase in Michigan compared to decrease in Race Still high number of records with unknown ethnicity 2 States Michigan and Wisconsin accounted for 94% of all unknown Ethnicity * State Uses Active QA Process ** All IPP Labs

Example Best Practice - 1 Improving IPP Data Completeness in Illinois and Ohio With Active Follow-up With Specimen Submitter Line List & Memo Sent to All Illinois IPP Specimen Submitters Monthly for Records With 1 or More Missing Key Data Elements Sex, DOB, Race, Ethnicity and Zip Code Specimen Submitter Requested to Complete Missing Data Element Report and Send to Illinois STD Program STD Program Staff Enter Missing Data into IPP Database Upon Receipt

IDPH Original Line List Report Sent to Specimen Submitters

IDPH Submitter Letter For Non-Payers

IDPH Submitter Letter For Payers

IDPH Lab Record Update Search Screen

IDPH Lab Record Update Screen

Adversity is The Mother of Invention Cost approximately $150 for wired gun to $500 for wireless

IDPH Line List Report Sent to Specimen Submitters

*Line List Mailed to Specimen Submitters Improvement In 2006 Data Quality Resulting From Illinois IPP QA Process* Data Field Originally Unknown % Orig. Fixed Final % Final % Ethnicity 5,738 3.49% 5,288 450 0.27% 92.2% Race 4,274 2.60% 3,919 355 0.22% 91.7% DOB 1,100 0.67% 969 131 0.08% 88.1% Sex 137 128 9 0.01% 93.4% Zip Code 3,046 1.85% 2,177 869 0.53% 71.5% IDPH labs account for approximately 84% of total Illinois test data submitted to IPP – Cook County Jail Approximately 500/month missing ethnicity N = 164,431 (IDPH Labs) *Line List Mailed to Specimen Submitters

Quality of Chlamydia and Gonorrhea Records, Lab Test Payers vs Quality of Chlamydia and Gonorrhea Records, Lab Test Payers vs. Non-Payers Illinois By Race 2005 vs. 2006 2005 Total Tests Unknown Race Percent 2006 Non-Payers 176,227 2,441 1.4% 162,831 494 0.3% Payers 4,718 103 2.2% 5,930 23 0.4% Payers represent 2.6% of total Tests Non-payers decreased by 7.6% (13,396) – most likely as a result of our program to reduce screening in low risk women Payers increased by 25.7% (1,212) tests – some providers moved from non-payers to payers

Quality of Chlamydia and Gonorrhea Records, Lab Test Payers vs Quality of Chlamydia and Gonorrhea Records, Lab Test Payers vs. Non-Payers Illinois By Ethnicity, 2005 vs. 2006 2005 Total Tests Unknown Ethnicity Percent 2006 Non-Payers 176,227 3,807 2.2% 162,831 645 0.4% Payers 4,718 136 2.9% 5,930 42 0.9% Payers represent 2.6% of total Tests Non-payers decreased by 7.6% (13,396) – most likely as a result of our program to reduce screening in low risk women Payers increased by 25.7% (1,212) tests – some providers moved from non-payers to payers

Quality of Illinois Chlamydia and Gonorrhea IPP Data By Provider Type For Race and Ethnicity, 2006 Total Tests Total Race Unknown Percent Race Total Ethnicity Ethnicity Adult Jail 2,007 1 0.05% 0.00% 1.2% Community HC 18,560 15 0.08% 23 0.12% 11.1% Family Planning Clinic* 73,201 170 0.23% 200 0.27% 43.8% Juvenile Detention 5,992 0.02% 3.6% School Based Clinic 6,119 84 1.37% 129 2.11% 3.7% STD Clinic 48,174 12 0.03% 28.8% Other 12,976 41 0.32% 47 0.36 7.8% * 76% (90/116) & 80% (93/116) of FP Clinics had 0 Unknown Race or Ethnicity, Respectively IDPH Lab Users

Ohio DPH Submitter Letter – Page 1

Ohio DPH Submitter Letter – Page 2

Ohio DPH Line List Report Sent to Specimen Submitters

Example Best Practice – 2 Improving IPP Data Completeness in Illinois IDPH IPP and CDPH Clinics Database Match Monthly Mailed Line List to Chicago Dept. Public Health (CDPH) Clinics was Problematic Because of Staff Issues – Alternative Automated System Developed Electronic File With Missing Key Data Elements Emailed Monthly to CDPH CDPH Matches File With Global Clinics Database and Returns to IDPH With Updated Records IDPH Updates IPP Database

*IDPH Labs Specimen Submitters Improvement In 2006 Data Quality Resulting From IDPH IPP - CDPH Global QA Non-STD Clinics Database Match Process* Data Field Originally Unknown % Orig. Fixed Final ** % Final % Ethnicity 456 7.3% 352 104 1.6% 77.2% Race 544 8.7% 436 108 1.7% 80.1% Zip Code 5.6% 280 164 2.6% 80.0% N = 6,257 *IDPH Labs Specimen Submitters

Using IPP Data to Improve Completeness of Incidence Data Illinois (Excluding Chicago) Database Match Change in Reported Chlamydia Cases, 1998 to 2006

Using IPP Data to Improve Completeness of Incidence Data Illinois (Excluding Chicago) Database Match Percent Change in Reported Chlamydia Cases, 1998 to 2006

Using IPP Data to Improve Completeness of Incidence Data Illinois (Excluding Chicago) Database Match Change in Reported Gonorrhea Cases, 1998 to 2006

Using IPP Data to Improve Completeness of Incidence Data Illinois (Excluding Chicago) Database Match Percent Change in Reported Gonorrhea Cases, 1998 to 2006

Using IPP Data to Improve Quality of 2006 Illinois (Excluding Chicago) Chlamydia and Gonorrhea Incidence Data 2005 2006 Change Percent Unknown Percent of Total 2005 Cases Percent of Total 2006 Cases Race 5,680 4,770 -910 -16.0% 15.0% 11.9% Ethnicity 8,888 5,090 -3,798 -42.7% 23.5% 12.7% Although reported cases increased 5.1%, reported unknowns decreased 16.0 and 42.5 percent respectively 2005 N = 37,835 2006 N = 40,229

Recommendations to Improve Quality and Completeness of IPP Prevalence and STD Program Incidence Data Conduct Periodic QA Review and Implement Passive or Active Follow-up of Key Data Fields Assume Most Specimen Submitters Will Correct Records With Missing Data if Asked Use Database Matches for Bi-Directional Improvement of Prevalence and Incidence Data

Acknowledgements Health Care Education and Training (HCET) State RVIPP Coordinators and Data Managers State RVIPP Laboratory and Testing Site Staff IDPH and CDPH STD Program Staff

Questions?

Improving Regional Infertility Prevention Project (IPP) Data Quality and Completeness 2008 National STD Prevention Conference Chicago, Illinois March 12, 2008 Charlie Rabins, MPH Chief, Sexually Transmitted Diseases Program Illinois Department of Public Health Springfield, IL Charlie.Rabins@Illinois.gov (217-782-2747)