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Louisiana’s Hospital Follow-up Exchange: A Decade of Partnership

Learn about the 10-year partnership between central and hospital-based registries in collecting cancer follow-up data through an electronic exchange system. Explore procedural improvements and the utilization of various data sources to enhance data quality.

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Louisiana’s Hospital Follow-up Exchange: A Decade of Partnership

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  1. Louisiana’s Hospital Follow-up Exchange: A Decade of Partnership Christina Lefante, MPH, CTR Louisiana Tumor Registry NAACCR Conference June 9th-13th, 2019

  2. Objectives • Lay out the process implemented to establish an electronic exchange of follow-up data • Identify procedural changes and improvements • Highlight the 10-yr partnership between central and hospital based registries

  3. Background

  4. Follow-up data is essential to classify and quantify cancer outcomes Hospitals in the United States accredited through the American College of Surgeons (ACoS) Commission on Cancer (CoC) collect follow-up in order to compare facility outcomes to state and national statistics Registries funded through the NCI-SEER program follow all entrants from the time of diagnosis to death

  5. ACoSCoC Facilities • CoC facilities adhere to 2 program standards in collecting follow-up • Standard 5.3 – All analytic cases diagnosed since the hospitals reference date must have follow-up > 80% • Standard 5.4 – All analytic cases diagnosed within the last 5 years must have follow-up > 90% • Several exclusions • Residents of foreign countries • Cases that are reportable by agreement • Age >100 • Non-analytic cases • Dx on or after January 1st 2006 classified class of case 00

  6. The Louisiana Tumor Registry (LTR) • Became a SEER Registry in 2001 • Follow-up is a scored data quality indicator • Required to collect follow-up on all cases diagnosed since LTR’s reference date of 2000 • Follow-up rate requirements for all SEER Registries • Invasive Age <20 ---------- >90% • Invasive Age 20-64 -------- >90% • Invasive Age 65+ ------------ >95% • All In-Situ -------------------- >90%

  7. The Problem

  8. From 2001-2007, LTR struggled to reach follow-up rates of 90% and 95% • Electronic reporting and linkages with external sources were not fully established • Louisiana law prohibited and still prohibits direct patient contact • The 2001 Revised Legislative Rules included • §1299.84. B. ...In addition, health care providers shall furnish follow-up data on each cancer patient when requested.

  9. The Solution

  10. LTR began researching alternative sources to help improve our follow-up numbers • The current legislation made receiving follow-up directly from facilities an option • LTR sought to establish a Hospital Follow-Up Exchange • The follow-up component of CoC-accredited facilities made an electronic linkage a possibility • Also, many facilities were still conducting active follow-up, an option LTR did not have

  11. The proposed Exchange would not be one-sided as LTR had several valuable sources of follow-up to offer including…. • State Death Record access as part of LTR’s Death Clearance activities • The Social Security Death Index or SSDI • Had the possibility to eliminate duplicate work at the hospital level by providing follow-up received from other participating facilities

  12. The Hospital Follow-up Exchange

  13. Input File • Hospital submits Input file to LTR via Webplus • LTR formats the Input file to fit the hospital follow-up import and links against the LTR database • SEER*DMS generates a follow-up record which allows updates in LTR’s database • If data on the input file matches exactly to a previous submission from the same facility, a follow-up record will not be generated • Possible matches are manually reviewed to aid accuracy of the linkage and the follow-up records are consolidated to accompanying Patient Sets • When matching and consolidation are complete, LTR generates a Return file

  14. Return File • Provided to the hospital when LTR has more recent follow-up information • Generated based on the full Input file regardless of whether a follow-up record was generated and consolidated in LTR’s database or not • Allows LTR to return updated follow-up on records that did not supply new info to LTR • Ensures that the hospital will receive information on their patients only • The Return file is returned via WebPlus or other secure file share methods • LTR can generate Return files that meet specifications for various software vendors

  15. LTR Follow-up Sources • Social Security Administration (SSA) • National Death Index (NDI) • Centers for Medicare and Medicaid Services (CMS) • Louisiana State Death Records and the Louisiana Electronic Event Registration System • The Louisiana Hospital Inpatient Discharge Database (LA-HIDD) • The Louisiana Immunization Network for Kid Statewide (LINKS) • Voter Registration Records through LexisNexis Accurint Services

  16. Timeline

  17. Timeline

  18. Results

  19. In 2018, out of 31 eligible facilities, 19 (61%) routinely exchanged follow-up data with LTR • 13 CoC • 6 non-CoC • LTR was able to provide better follow-up on a range of 17% to 43% of cases submitted for these linkages • Follow-up from these linkages makes up 7% of LTR’s follow-up for invasive cancers between the ages of 20 and 65

  20. Challenges

  21. Participants in the Hospital Follow-up Exchange benefit the most when all facilities participate We have struggled with lack of participation from eligible facilities since the Exchange launched in 2007 Changes in the structure of hospital cancer registries and the introduction of more contract abstractors has altered participation rates over the last decade

  22. Future Directions

  23. LTR is actively working to get non-compliant facilities onboard to participate in the Exchange • The Legislative Rules governing cancer registry follow-up have not altered greatly since 2001 • §8507. Case Reporting • H. Follow-Up. Current follow-up, as defined in §8503, is required for all cancer cases. Health care facilities and providers will supply this information when requested. • The upcoming 2019 revision of Louisiana’s Legislative Rules governing the cancer registry will introduce a requirement for hospital’s to participate in the exchange with an annual frequency

  24. Conclusion • The LTR Hospital Follow-up Exchange has fostered partnership and cooperation amongst the central registry and hospital registries • We have identified a place where the central registry can give back to hospital registries who serve as a valued partner in cancer surveillance

  25. Acknowledgements • The State of Louisiana • CDC, National Program of Cancer Registries (NPCR) • NIH, National Cancer Institute, Surveillance Epidemiology and End Results Program (SEER)

  26. Co-Authors • Xiao-Cheng Wu, MD, MPH, CTR • Mei-Chin Hsieh, PhD, MSPH, CTR • Brent Mumphrey, BS

  27. Thank You! Contact: Christina Lefante, MPH, CTR Louisiana Tumor Registry clefan@lsuhsc.edu 504-568-5843

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