1. Registry Widgets Automated Cancer Registration: Building the Business Case and Moving Forward Wendy Scharber, RHIT, CTR Registry Widgets

2. Modernisation Changes in Health Services IT –Better systems –Service integration –The Internet and connectivity –Standards (nomenclatures) –Expectations Effect on Cancer Registry operations –What does it mean for the future?

3. Registry Widgets Great Expectations Significant opportunities from existing data –Solid “Core”, plus Wider & Deeper –Positioned to exploit all this data Good Clinical Outcomes data Linked data continuum for –Research, Health economics, intelligence, informing change, modelling* Quality assured Accessible data Better coordination / Cultural change

4. Registry Widgets Great Concerns Data will become too diverse and too expansive to be recorded manually How much do we want it? –How collaborative do we really want to be? Can Registries cope? Can it afford not to? –Reactive or Proactive

5. Registry Widgets Just collect the data !!!

6. Registry Widgets This is not “Better”

7. Registry Widgets Automated Cancer Registration as a solution Implementation of electronic data receipt and automated rules-based processing, to build a common patient record, (including data from traditional and non-traditional data sources) to satisfy a growing range of needs. –All registry operations could be affected Receipt of data Patient Linkage Determining Number of Primary Tumours Building a consolidated tumour record Reporting/Collaborating/Research

8. Registry Widgets EHR Lifetime Physic al Needle Bx Lumpectomy Axillary Dissection Hormonal Rx Radiatio n Follow- up Visit Physical PCP: Primary Care PhysicianPCP: Primary Care Physician PCPPCP OncologistOncologist RadiologistRadiologist SurgeonSurgeon Radiation CenterRadiation Center Introduction to the EHR Source: CDC National Program of Cancer Registries’ Modeling Electronic Reporting Project

9. Registry Widgets GP Referral Invest’nDiag.MDTSurg.Radio. Chemo. F/Up Death nhs, gp, suspected, date of referral nhs, diagnosis, date nhs, diagnosis, date, care plan nhs, date, hospital, procedure, {image.xml} } nhs, date, hospital, site, dosage nhs, suspected, date of invest, hospital nhs, date, hospital, drug nhs, gp, last known alive, date of death Cancer Registry Record Events on the Care Pathway Message s Rules Source: Chris Carrigan, National Coordinator, Cancer Registration, England

10. Registry Widgets How does ACR change our operations “Data continuum” –Data from multiple sources at a variety of times Computer instead of paper Registry staff duties Flexible

11. Registry Widgets What will we gain? Improvements in registry operations –Handling greater volumes of data –Increased speed of processing Outcomes –More information at a low cost –Completeness of ascertainment –Timeliness of reporting

12. Registry Widgets

13. What could it mean? Massive Opportunities for information use –Observational Research –Health Economics –Targetting –Cradle to Grave –Integrated Public Health –Cause and Effect –Action and Outcome –Data Mining

14. Registry Widgets What are the challenges? Issues of availability –The volume and quality trade-off: the balance between high volume/low added value per transaction processed and low volume/high added value per transaction processed Issues of sensitivity –Automated processes are sensitive to even small modifications may introduce systematic bias and variations in the data series. Issues of visibility –The effects of changes may difficult to anticipate and the causes of identified variation may be even harder to identify Issues of Quality –Speed and quantity doesn’t always mean quality.

15. Registry Widgets Requirements to move forward AVAILABILITY –A method to integrate high volume, low added value data sources in to richer and more cost effective registration feeds SENSITIVITY –Some means of handling high volume testing (cost effectively) VISIBILITY –Clearly defined, documented, and abstracted business Rules Design Rules Process management tools Quality –The role of the registry in areas of quality control and quality assurance will be needed even more automation increases

16. Registry Widgets Moving beyond the business case

17. Registry Widgets IACR’s role in ACR - Draft Establish a Referent Group to: –Further international cooperation, communication and coordination of automated cancer registration and electronic reporting (E- Reporting) methodology and resources (i.e. tools). The Referent Group seeks to: –Improve the efficiency and consistency of data collection and processing worldwide using electronic and automatic methods, thereby providing more timely and comparable data for cancer control and research activities.

18. Registry Widgets Purpose of Referent Group -Draft 1.Provide inter-registry leadership and coordinated evaluation of current methods and standards for ACR/E-Reporting; 2.Provide a mechanism for harmonizing existing standards and where possible, establishing new consensus standards and methodology for automating cancer registry functions; 3.Serve as a centralized clearinghouse for events, tools, and standards relating to ACR/E- Reporting; 4.Minimize the duplication of effort in ACR/E- Reporting Activities; 5.Promote collaboration.

19. Registry Widgets Duties and Tasks Consultancy for registries who need assistance for management or planning of ACR systems Website for ACR Standardize methods and edits Research and Development community Forum for identifying and evaluating issues and solutions

20. Registry Widgets Collaboration at its Best

21. Registry Widgets Summary Improvements in Health Care IT will create –Huge benefits for Patients, Planners, Researchers –Meet the information needs of the future Implementation of Automated Cancer Registration will –move registries from “From Registration to Intelligence” IACR can be a vital leader to –Identify optimal solutions for rapid progress for robust cancer registry data

22. Registry Widgets Conclusion Wendy Scharber, Registry Widgets –wendy@registrywidgets.com Chris Carrigan, National Health Service, England Steve Richards, Thames Cancer Registry, England Richard Middleton, Northern Ireland Cancer Registry Lorenzo Simonato, University of Padua, Italy “ A conclusion is simply the place where you got tired of thinking.”

23. Registry Widgets Thank you for your attention.