Registry Informatics and C-Change: Transforming Registries

1. Registry Informatics and C-Change: Transforming Registries NAACCR 2009 Showcase, June 18, 2009 Tasha Tilghman-Bryant, MPA Project Associate C-Change Sandy Thames Public Health Advisor National Program of Cancer Registries, CDC Antoinette Stroup, PhD Deputy Director Utah Cancer Registry

2. Cancer Surveillance & Information Initiative Tasha Tilghman-Bryant, MPA Project Associate, C-Change

3. Founded in 1998 (National Dialogue on Cancer) 501(c)(3) Members representing 130+ organizations Private, Public, and Not-for-Profit Sectors C-Change

4. Vision and Mission To eliminate cancer as a public health problem at the earliest possible time by leveraging the expertise and resources of our membership.

5. Founding Principles C-Change: Exists to accelerate the discovery and implementation of comprehensive solutions to the urgent societal burden of cancer Brings collective expertise and resources to solve issues that its members can not solve alone through a community of leaders Strives to enhance the effectiveness of our member organizations Rooted in the non-partisan participation of leaders from all sectors

6. CSIS I held 2004 in Phoenix, AZ 86 experts 7 recommendations Key Result - engage critical players in achieving standards across the cancer surveillance enterprise. Cancer Surveillance & Information Summit (CSIS) - Background

7. CSIS II • February 2008 in Miami, FL • 50 experts • 9 recommendations - 3 of the 9 will be pursued further

8. CSIS II - Recommendations • Transform Registries • Improve the coordination of surveillance and clinical data needs for quality improvement. • Develop a “Cancer Patients Like Me” Web Site to engage patients in submitting data that can enhance registries.

9. Additional Information www.c-changetogether.org/pubs

10. Description of “Transforming Registries” from the National C-Change Summit “A tangible need is to make registry information available at the point of healthcare service and to scale the information available from population-based registries to the available resources to maintain a high quality surveillance enterprise. Specific actions to close this gap are to: • evaluate current variables in surveillance for relevancy, utility, and cost; • enable registries to focus on thematic areas within the cancer surveillance spectrum; and • Create a demonstration project of point of service and registry. One potential goal is to enhance the value of cancer registries and the cancer surveillance spectrum by refocusing on priority data variables, and another is to develop a sustainable model that enhances the utility of registries for patient care.” Reference: C-Change Cancer Surveillance and Information Summit II Symposium Report, Page 1, February 2008

11. Transforming Registries Committee • CDC/NPCR – will coordinate/report to C-Change • NCI/SEER • ACoS/COC • NCRA • NAACCR • State Cancer Registries • Cancer Registry Vendors • C-Change

12. Committee Tasks • Review description of “Transforming Registries” objective from C-Change Summit Report • Provide recommendations to C-Change on revising the “Transforming Registries” objective • Develop a draft Plan for Transforming Registries • Gather input from cancer registry community on the draft Plan for Transforming Registries • Gather information on current activities in the cancer registry community that address components of the Plan • Identify new activities needed to address the Plan • Report to C-Change and Cancer Community ~ 6 months

13. Plan for Transforming Registries • What will cancer registries look like in 5-10 years? • Provide a conceptualized view of Cancer Registries and identify steps needed to achieve it. • What are the challenges/barriers to achieving “Transformed Registries”? • What are the top five things that will have an impact on Registries?

14. Cancer Registries in 5-10 Years • Real-time electronic reporting/rapid case ascertainment • EMR/EHR systems with clearly defined national standards • Interoperable Cancer Registry database management systems • More sophisticated Cancer Registry software • Automation of tasks

15. Cancer Registries in 5-10 Years • Provide online/real-time statistics to patients/providers; data provided back to the EHR/EMR • Maintain role to provide national data on cancer morbidity and mortality, examine trends and be a base for seminal research studies based on more timely data • Provide CCR Patient ID back to hospital registry

16. Cancer Registries in 5-10 Years • Two tiered reporting: basic incidence and later treatment and other clinical information • Continue to address privacy and security • National standards will be available • More timely and expanded data items • Increased linkages with other datasets

17. Conceptual View Real-time data to hospital and CCR Transmission via EHR/EMR interface Automation for processing and utilizing data

18. Steps to Achieve Conceptualization Develop Model and Use Cases Evaluate CCR systems against Model and recommend best practices Increase funding Technological infrastructure (information systems improvements, cyber-infrastructure) Human resources Evaluate (change) how registries do business (process management) Collaborate with EHR vendors Linkage with other data systems Privacy and Confidentiality

19. Barriers/Challenges

20. Barriers/Challenges

21. Barriers/Challenges

22. #5….IN-tegration of surveillance and clinical care data systems. #4…IN- (Im)proved technologies #3…IN-formation systems training #2…IN-tensify (strengthen) privacy and security Okay…so maybe 6 items…tied for #1: #1…IN-corporate or IN-stitutionalize the EHR #1…IN-fuse funding! Top 5 IN-formatics Items Impacting Cancer Registries

23. Morning Session Highlights 50+ in attendance (out-the-door) Lively discussion Feedback and Recommendations

24. Morning Session Highlights – Feedback/Recommendations Mission Statement Clearly define scope to include hospital AND central registries Clearly define goals/objectives, what we plan to accomplish and for whom Fluid process (changes in technology and policy) Modify conceptual view Expand Steps to reach Conceptual View

25. Morning Session Highlights – Feedback/Recommendations Develop and implement protocol for evidence-based evaluation of data prior to release Increase interoperability of linkage datasets Integrate with clinical trials and tissue banks at hospital, state and national levels Collaboration with key informants (HITSP, CCHIT, EMR vendors, hospital registry vendors, CAP and others)

26. Next Steps Redistribute to NAACCR community Distribute to TBD groups (i.e., NCRA Listserv) Update “Transforming Registry” objective and submit to C-Change Complete an inventory of current activities that will address the plan Identify activities needed to address the plan and ways to begin work

27. Registry Informatics and c-Change: Transforming Registries Committee members Ken Gerlach, Sandy Thames (CDC-NPCR) Tasha Tilghman-Bryant (C-Change) Nan Stroup (Utah) Dennis Deapen (Los Angeles) David Stinchcomb (NCI/SEER) Wendy Scharber (Registry Widgets) Donna Getreuer (IMPAC) Lori Swain (NCRA) Andrew Stewart, Jerri Linn Phillips (ACoS) Betsy Kohler (NAACCR) Brenda Edwards, Marsha Reichman (NCI) Eric Durbin (KY)