Jeannette Jackson-Thompson, MSPH, PhD Missouri Cancer Registry and Research Center (MCR-ARC) Department of Health Management & Informatics, School of

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Jeannette Jackson-Thompson, MSPH, PhD Missouri Cancer Registry and Research Center (MCR-ARC) Department of Health Management & Informatics, School of Medicine University of Missouri Columbia

Project funded as part of American Recovery and Reinvestment Act (ARRA) Comparative Effectiveness Research activities through the Centers for Disease Control and Prevention (CDC) MCR-ARC data collection activities are supported by a Cooperative Agreement between the Missouri Department of Health and Senior Services (DHSS) and the CDC and a Surveillance Contract between DHSS and the University of Missouri (#U58/DP00820-04/05)

Suzanne Culter, RN, PhD (Project Coordinator) Alena Headd, MSIT (Software Support Analyst) Chester Schmaltz, PhD (Senior Statistician)

Describe how MCR-ARC is obtaining previously unreported cases and treatment information through use of EHRs Discuss issues & challenges

Laws/Statutes in every state Facilities must report new cancer cases to a central cancer registry (CCR) In past, emphasis on hospital-based cases Abstracted by hospital CTR Capturing non-registry cases & treatment is resource intensive Clinics/ physician offices (C/POs) Other non-hospital facilities Small hospitals without registries

Increasing number/type of cases being diagnosed/ treated entirely outside a hospital setting Melanoma & prostate cancers Leukemias & lymphomas In situ & localized breast and colorectal cancers Finding a cost-effective way to obtain such cases and more complete treatment information becomes increasingly important Accurate incidence rates/trends Avoid bias

Informatics/information technology and the adoption of electronic health records (EHRs) by C/POs offers an opportunity for CCRs to improve case completeness & data quality Spurred on my Meaningful Use requirements ARRA funding of two special projects by CDC/NPCR through contracts with ICF Macro MCR-ARC Kentucky Cancer Registry (KCR)

Improve annual case completeness and timeliness through innovative, yet practical, approaches that: Focus on importing data from primary care & targeted specialty physician office EHRs; and Can be replicated or adapted by other CCRs

Project Period 34 months 12.01.10 09.30.13) First Steps (pre-award): Identify Potential sites Commitment from at least one physician Potential partners/collaborators/resources MO-HITECH MO HIT Assistance Center (MO s Regional Extension Center) Missouri Cancer Consortium (MCC) CDC/NPCR AERRO Physician Office/Clinic Work Group

Entered into subcontract with ICF (Macro) Engaged in internal strategic planning Made two strategic decisions: Created MCR-ARC Redesigned website (http://mcr.umh.edu) Worked with internal/external partners to identify potential implementation sites

Reviewed work plan Assigned % of existing staff & hired new staff Revised work plan Already had commitment from influential MD No need to ID primary care (PC) EHR vendors obtain from MO HIT Assistance Center Need to obtain commitment from urologist(s) & medical oncologist(s) Prioritized activities

Regular meetings & conference calls CDC/NPCR AERRO Workgroup MO-HITECH MO HIT Assistance Center CDC/ICF Macro/Funded SPs MCR-ARC SP #3 team Reports Monthly/quarterly reports to ICF Macro/CDC Quarterly ARRA reports

Obtained list of certified (Meaningful Use) PCP EHR vendors from MO HIT Assistance Center MO & KS RECs agreed on common list 12 vendors Discussed with KCR Director Met with vendor reps at 2011 & 2012 HIMSS annual meetings Discussed project night & day difference 2011 to 12 Demos of software Arranged for web-based demos (2011; dropped)

EHR vendors can be certified for meaningful use without following OMB guidelines on race & ethnicity No provision being made for multiple race fields In some EHR systems it is even possible to choose Hispanic as race and African- American as ethnicity Cancer not in Stage 1 of MU Vendors resistant to make changes (but not if in Stage 2)

Clinic withdrew Volunteer participant Reason: Cancer not in Stage 1 of MU Delays Identifying PC practices Developing/distributing brochures Going live with revamped website Obtaining list of med oncs/hematologists

Identified/recruited C/POs & CAHs Made site visits/obtained commitments Hannibal Clinic Vitera (I) sent test data CAH #1 McKesson (I) C/PO #1 eclinical Works (I) CAH #2 NextGen (PI) C/PO #2 Next Gen (S) CAH #3 Miditech (S) C/PO #3 Meditech (I) Note: I = Implemented; PI = Partly implemented; S = Selected

Made site visits/obtained commitments C/PO #4 Meditech (I) test file & data file C/PO #5 All Scripts Pro (I) (Impact?) C/PO #6 GE Centricity (I) Other Radiology Dept, MU Hospitals & Clinics Pilot project QuantumMark & AIM Specialty C/POs Urologist developed own EHR, create/send form Med Oncs/Hematologists work with L&LS

Bringing in previously unreported cases/ obtaining additional information: Directly from C/PO EHRs Download from hospital Radiation Dept. Test report from EHR developed by Urologist Later in year, CAH that sends paper copies of med records will submit EHR file Plan add one or more Med Oncs/Hematologists

When data from EHRs brought into MCR-ARC Where store How process How integrate into QA activities Assess impact of Cut in NPCR funding End of ARRA funding Utilize strategic planning to offset impact: Policies, procedures, workflow, etc. ID funding opportunities, alternative funding

Underreporting of cases is largely due to lack of human and financial resources Funding to improve infrastructure and import data directly from EHRs can: Improve data quality and completeness; Provide data needed for public health surveillance; and Facilitate comparative effectiveness and other research.

Anticipate positive outcome for MCR-ARC Improve data quality, completeness & timeliness Continue collaborations Big picture Other NPCR-funded CCRs adopt or adapt Reducing # of missed cases & improving timeliness - implications for surveillance & CER Describe/reduce disparities in population subgroups. Challenges remain approaches & resources

Contact info: Jeannette Jackson-Thompson, MSPH, PhD Director, Missouri Cancer Registry & Research Center Research Associate Professor, Health Management & Informatics, School of Medicine Core Faculty, MU Informatics Institute University of Missouri, Columbia, MO 65211 jacksonthompsonj@health.missouri.edu (573) 882-7775 Website: http://mcr.umh.edu