1. Integrating Central and Hospital Registries To Improve Timeliness and Data Quality (The Central Cancer Registry as a Hub for Data Exchange) David Rousseau, BS Director, CIS Hospital Association of Rhode Island Rhode Island Cancer Registry June 18, 2009 San Diego, CA RICR supported by RI DoH and CDC/NPCR

2. Background The Rhode Island Department of Health contracts the Hospital Association of Rhode Island to maintain the statewide cancer registry (RICR). The RICR is funded by the Rhode Island Department of Health and the National Program for Cancer Registries of the Centers for Disease Control and Prevention The Rhode Island Department of Health contracts the Hospital Association of Rhode Island to maintain the statewide cancer registry (RICR). The RICR is funded by the Rhode Island Department of Health and the National Program for Cancer Registries of the Centers for Disease Control and Prevention

3. Central Cancer Registries in General Collect data from hospitals and non hospital sources Collect data from hospitals and non hospital sources File statewide reports File statewide reports Investigate areas of perceived elevation Investigate areas of perceived elevation Submit data to NAACCR & NPCR annually Submit data to NAACCR & NPCR annually Provide data to qualified researchers Provide data to qualified researchers Perform case finding and data quality audits Perform case finding and data quality audits

5. Central Cancer Registries in General Central cancer registries have become the primary source of training Central cancer registries have become the primary source of training Provide hospital administrators with data to make strategic decisions Provide hospital administrators with data to make strategic decisions Provide registrars with technical assistance Provide registrars with technical assistance

6. Rhode Island Cancer Registry Registry staff provide support to hospital tumor registries and promote American College of Surgeons approved cancer programs in acute care hospitals throughout the State. Registry staff provide support to hospital tumor registries and promote American College of Surgeons approved cancer programs in acute care hospitals throughout the State.

7. Promoting Hospital Registries Provide hospital cancer registries with diagnostic and treatment information on shared cases when the information isn’t available in the patient’s record so the CTR can complete a hospital cancer registry abstract Provide hospital cancer registries with diagnostic and treatment information on shared cases when the information isn’t available in the patient’s record so the CTR can complete a hospital cancer registry abstract Provide follow-up information to hospitals when traditional methods failed Provide follow-up information to hospitals when traditional methods failed

8. Follow-up!

9. Follow-up on Demand Reporting hospitals were already providing RICR with update information electronically monthly Reporting hospitals were already providing RICR with update information electronically monthly RICR staff were already providing follow-up information via telephone inquiry RICR staff were already providing follow-up information via telephone inquiry Follow-up is a labor intensive activity that does not require the skill set of CTR Follow-up is a labor intensive activity that does not require the skill set of CTR Lends itself to automation Lends itself to automation Follow-up benefits for hospitals and RICR Follow-up benefits for hospitals and RICR Reduces CTR time spent on a clerical function Reduces CTR time spent on a clerical function Improves timeliness Improves timeliness

10. Hospital Follow-up Process Check hospital databases for recent admissions Check hospital databases for recent admissions Generate follow-up letters for physician offices Generate follow-up letters for physician offices Generate follow-up letters for other hospitals Generate follow-up letters for other hospitals Fax letters Fax letters Generate letters to secondary sources Generate letters to secondary sources Call physician offices Call physician offices Call RICR Call RICR Update hospital abstract Update hospital abstract

11. Follow-up on Demand RICR staff working with RMCDS developed the follow-up on demand process RICR staff working with RMCDS developed the follow-up on demand process The hospital cancer registry creates a file of the cases that are due to be followed in the coming month that is sent electronically to RICR The hospital cancer registry creates a file of the cases that are due to be followed in the coming month that is sent electronically to RICR RICR conducts a match for cases to be followed after the monthly data submission is processed RICR conducts a match for cases to be followed after the monthly data submission is processed Cases with more current follow-up date are added to a file that is returned to the requesting hospital for review Cases with more current follow-up date are added to a file that is returned to the requesting hospital for review

12. Follow-up Match Hospital code number assigned by DoH Hospital code number assigned by DoH Accession number Accession number Sequence number Sequence number Medical record number Medical record number

13. Follow-Up Report Layout Required Fields 1. Pt_Accn_No (Accession Number) 2. Dg_Seq_no (Sequence Number) 3. Pt_Med_Rec_No (Medical Record Number) 4. Pt_Last_Nm (Patient Last Name) 5. Pt_First_Nm (Patient First Name) 6. Dg_Init_Dx_Dt (Date Of Initial Dx) 7. Dg_Site (Primary Site) 8. Dg_Last_Fol_Dt (Date Of Last Follow-Up ) 13

14. Final Report 1. Accession Number 2. Chart 3. Last Name 4. First Name 5. Date of Diagnosis 6. Primary Site 7. Date Last Seen 8. Patient Status 9. Cancer Status 10. Death Certificate Number 14

15. 15 Final Report Format Cases where the RICR has a more current Date Last Scene Accession # Rec # Lst Name First Date of Dx Site DLS Vstat C DC # 200000001-02 12345 Doe Jane 01/01/2000 C509 01/01/2009 1 1 200100002-00 21450 Smith John 01/01/2001 C349 02/01/2009 1 1 200200003-01 99999 Doe John 01/01/2002 C259 01/15/2009 0 2 200300004-00 54321 Smith Jane 01/03/2003 C509 12/15/2008 1 1

16. Monthly Follow-up Results Monthly follow-up returns averaged 7.1% Monthly follow-up returns averaged 7.1% High of 8.6% High of 8.6% Low of 5.6% Low of 5.6%

17. Time Saving Hospitals in Rhode Island follow 49,520 cancers in a given year. Hospitals in Rhode Island follow 49,520 cancers in a given year. Hospitals conduct follow-up on 4501 cancers on average in a given year. Hospitals conduct follow-up on 4501 cancers on average in a given year. The RICR provides follow-up on 3515 cancers statewide The RICR provides follow-up on 3515 cancers statewide The RICR provides 78% of an average hospital’s follow-up burden in a given year. The RICR provides 78% of an average hospital’s follow-up burden in a given year.

18. Time Savings With hospital cancer registrars spending less time on follow-up they will have more time to spend on case finding, abstracting and internal quality control projects. With hospital cancer registrars spending less time on follow-up they will have more time to spend on case finding, abstracting and internal quality control projects. The net result should be data that more timely and of higher quality The net result should be data that more timely and of higher quality

19. Lost to Follow-up Hospital cancer registries consider patients that have not been followed for 18 months to be lost to follow-up and active follow- up is ended Hospital cancer registries consider patients that have not been followed for 18 months to be lost to follow-up and active follow- up is ended Since these cases can impact the CoC approval process we decided to include a lost to follow-up search Since these cases can impact the CoC approval process we decided to include a lost to follow-up search

20. Lost to Follow-up Results Lost to follow-up search found an average 12.7% Lost to follow-up search found an average 12.7% High of 18.1% High of 18.1% Low of 8.2% Low of 8.2%

21. Additional Cooperative Venture Additional Cooperative Venture The RICR sponsored a statewide meeting to introduce the new METRIQ operating system that was presented by the Elekta Northeast Registry Supervisor. The RICR sponsored a statewide meeting to introduce the new METRIQ operating system that was presented by the Elekta Northeast Registry Supervisor.

22. Future Plans RICR staff are working with RMCDS to develop a process that allows hospitals to share diagnostic and treatment data on shared cases using the RICR as a hub for data exchange RICR staff are working with RMCDS to develop a process that allows hospitals to share diagnostic and treatment data on shared cases using the RICR as a hub for data exchange Work with hospital cancer registry staff to promote greater use of existing software capabilities Work with hospital cancer registry staff to promote greater use of existing software capabilities

23. Special Thanks  Tara Szymanski, CTR Rhode Island Hospital & RICR Rhode Island Hospital & RICR  Larry Derrick Rocky Mountain Cancer Data Systems Rocky Mountain Cancer Data Systems  Rhode Island Cancer Registry Community