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. ACoS CoC 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 < >90%
Invasive Age >90%
Invasive Age >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
§ B. ...In addition, health care providers shall furnish follow-up data on each cancer patient when requested.

9. The Solution

10. LTR sought to establish a Hospital Follow-Up Exchange
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. Transmitted Securely through WebPlus
Facility Generates Input File for Linkage to LTR
Transmitted Securely through WebPlus
Data Items
Last Name
First Name
Date of Birth
Social Security Number
Date of Last Contact
Vital Status
Cause of Death
Sex
Criteria
* Include All Registry Data
* No “Class of Case” Exclusion
* Diagnosis Year 2000+
* Excel File Format Preferred

14. 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

15. 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

16. 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

17. Timeline 2007 2009 2013 Introduced the Hospital Follow-up Exchange
Linkage externally conducted in LinkPlus
Ask hospitals to submit at least twice a year
2009
LTR migrated to SEER*DMS
Hospital Follow-up Import built into SEER*DMS
Added Medical Record # and Accession # to the Input file
2013
Began offering return files in CNExT’s Shared Follow-up Format

18. Timeline
2016
Began offering Return files in the Elekta Registry-Specific Layout (SMS) for Metriq facilities
2018
Proposed revisions to the legislative rules that would make participation in the Exchange mandatory in Louisiana
2019
First time conducting the Exchange with a facility from a neighboring State

19. Results

20. 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

21. Challenges

22. 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

23. Future Directions

24. 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

25. 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

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

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

28. Thank You! Contact: Christina Lefante, MPH, CTR
Louisiana Tumor Registry