Qualified Clinical Data Registries (QCDR) Brief Profile Proposal for 2012/13 presented to the Quality, Research & Public Health (QRPH) Planning Committee Terese Finitzo OZ Systems October 9, 2013

The Problem Reporting to registries is integral to improving population and public health. MU Stage 2 regulations added a public health related menu objectives for Eligible Professionals (EP): the capability to identify and report specific cases to a specialized registry, other than a cancer registry. The purpose of this White Paper is to describe work processes and data information exchange needs for Qualified Clinical Data Registries (QCDR) reporting to increase electronic reporting. Much of the information currently submitted to PHAs is via paper reports and manual data entry.

Value Proposition To reduce the burden on eligible professionals (EPs) to fill out and submit paper forms. To provide meaningful use credit to EPs To expand the quantity and quality of information available in the registry for public health Specifically to reduce EHDI loss to follow-up. To provide Public Health the opportunity to leverage the MU specialized registry objective to increase the timeliness and completeness of mandated and non-mandated acute and chronic disease reporting from ambulatory care settings using electronic reporting. To expand the use and value of existing IHE and HL7 protocols.

Market Readiness It is expected that the White Paper will describe a plan and steps to achieve electronic reporting to a qualified clinical registry for specific arenas of care (like EHDI, Birth Defects) That roadmap will improve market readiness of existing QRPH profiles like EHCP, NANI QME-EH and EHDI WD. It will also be applicable for RFD (Communicable Disease Reporting) and can potentially enhance its value. Additional profiles will be accessed depending the public health arena

Existing IHE Profiles and Risks Risk of this proposal not being undertaken this cycle? Loss of momentum for specific public health arenas of care There are time constraints in the proposed rule in the Federal Register re meaningful use and registries that make moving ahead important The rule proposed changes to the quality reporting initiatives including the Physician Quality Reporting System (PQRS) - a pay-for- reporting program.

Use Case Current Example Use Case – Eligible Professional (EP) identifies a coarctation of the aorta in a newborn. The birth defect is one to be reported to the State Birth Defects (BD) Program. The provider finds the proper Birth Defects reporting form and fills it out and mails or faxes it to the BD Program. The BD staff receive the partially completed form, enter the data in the BD Registry. They repeatedly call the provider’s staff for additional information. There remains a substantial incomplete data. Proposed Use Case: The EP accesses a form within the electronic health record which is prepopulated for submission to the Birth Defects Program. The EP completes the form by adding data not available in the EHR and submits it to the State’s Qualified Clinical Registry for Birth Defects. The patient’s information can be matched to other information on the patient to foster improvement in care.

Proposed Standards & Systems IHE: Newborn Admission Notification Information (NANI); Retrieve Form for Data Capture (RFD); HL 7: New Device Capture CCHD and EHDI Draft Standards for Trial Implementation Vocabulary Standards: SNOMED-CT; LOINC Potential Systems: Hospital EHR; EP EHR; Data Capture System (RFD); Public Health Information System; Qualified Clinical Registry System* *qualified clinical data registry collects medical and/or clinical data for the purpose of patient and disease tracking to foster improvement in the quality of care furnished to patients.

Discussion What level of effort do you foresee in developing this profile? Moderate Plus Identify Qualified Clinical Data Registries for pilot implementations Mapping from Certified EHRs to these Qualified Clinical Registry systems Profile Editor: Name, and company