Patient Registry Solutions
Traditional thinking about the design of patient registries has been disrupted by Electronic Medical Record (EMR) systems and large scale clinical data warehouse initiatives. Registries have previously been supported by individual stand-alone solutions operating independent of enterprise systems. Registry data would be abstracted from paper records, interviews, or custom data feeds from enterprise systems, then analyzed and used with tools specific to each registry.
A new approach to patient registries has become possible due to the acceleration of EMR and other health care IT adoption driven by Meaningful Use and other forces. This new patient registry strategy can provide scalable tools that leverage modern enterprise IT systems to reduce costs, promote effective reuse of data, and improve patient care.
Recombinant By Deloitte's enterprise approach to patient registries is based on a core meta-registry data platform, data integration from EMRs and open electronic data capture (EDC) tools, and analytic frameworks for specific registries. The result is a high-value infrastructure focused on standardization and data re-use to deliver virtual registries to users, facilitating development of new registries through a central framework.
The Traditional Approach to Patient Registries
The traditional approach to patient registries is based on distinct silos established to capture and manage data for each registry. With this approach, each registry operates as a stand-alone system capturing data through manual abstracts, single purpose forms or custom feeds directly from clinical systems. As a result, each registry (i) has its own tools for data capture, integration, and analysis, (ii) does not leverage existing data that could be sharable across projects, and (iii) does not make registry data available for other purposes. For registries that operate outside of the institution, registry data is often unavailable for use within the institution because data submission is usually accomplished through web-based forms capturing data directly in off-site data repositories.
The challenges of this traditional approach to patient registries include:
- Wide variation of tools and capabilities for forms generation, data capture, data integration, and analytics across registries
- Frequent "cut and paste" and redundant manual data entry, resulting in unnecessary work and reduced data quality
- Limited registry use of existing clinical and administrative data generated during routine care
- Registry data not available to providers for patient care or for use across registries
- No access to external registry data sets for local analysis
Recombinant By Deloitte's Enterprise Solution to Patient Registries
The Recombinant By Deloitte enterprise solution to patient registries mitigates the limitations of the traditional siloed approach to registries. A single framework allows data and tools to be leveraged across multiple projects, with appropriate controls to meet privacy requirements, human subject protections, and competitive restrictions on data access.
The core of the enterprise framework is the Recombinant By Deloitte Meta-Registry Manager, which works with a variety of tools to capture data, integrate registry data into a single repository, and deliver data to analytic tools for specific registries or for analysis of data across registries.
The Meta-Registry Manager can also link to a Recombinant By Deloitte Data Trust or a legacy data warehouse to use existing data warehouse data to pre-populate registry data, and integrate registry-specific data into an organization's data repository.
Data Capture: The Meta-Registry Manager works with a variety of tools for capturing registry data from various sources.
- Open Source EDC tools allow capture of new data specific to an individual registry project through standard interfaces to the Meta-Registry Manager
- Recombinant By Deloitte Data Source Adapters extract, cleanse, and transform data from EMRs and other source systems directly to the Meta-Registry Manager
- The Recombinant By Deloitte Data Capture Agent System automates the process of collecting, encrypting, and transmitting data from sites using separate clinical and administrative systems, and manages a network of Data Capture Agents for a group of sites contributing data to the Meta-Registry Manager
- External Registry Adapters extract data from popular registries
Data Integration and Management: The Meta-Registry Manager integrates data from multiple registries into a single repository, and maintains control data enabling registries to share a single system while complying with Health Insurance Portability and Accountability Act (HIPAA) and Institutional Review Board (IRB) requirements, and also protecting proprietary/competitive restrictions on registry data. The Meta-Registry Manager can also link to the Data Trust or a legacy data warehouse as a source of data to pre-populate a registry, or to make registry-specific data available for analysis and reuse for other purposes in the organization. Recombinant By Deloitte's Nucleus Meta Data Management Suite provides master patient and provider identifiers, and normalizes registry data to controlled medical terminologies, as part of integrating data into the Data Trust, or directly in the Meta-Registry Manager data repository.
Registry Analytics: The Meta-Registry Manager provides a standard platform to deliver data supporting multiple registry needs across an organization:
- Recombinant By Deloitte can develop Registry Adapters to deliver data to an existing registry package, or can create Custom Adapters and Analytics to support new registry requirements
- Recombinant By Deloitte's Selectrus Performance Analytics Suite and Registries offer pre-defined capabilities for several areas of disease management and preventive health, and for external reporting measures such as Centers for Medicare & Medicaid Services (CMS) Meaningful Use, PQRS, and Healthcare Effectiveness Data and Information Set (HEDIS)
- i2b2 (Informatics for Integrating Biology and the Bedside) provides query and analysis capabilities for de-identified data across registry datasets from the Meta-Registry Manager
Recombinant By Deloitte's Planning, Implementation, Development, and Support Services can enable institutions to launch an enterprise approach based on the Meta-Registry Manager quickly and cost effectively:
- Planning – Recombinant By Deloitte's experience helps organizations address detailed system evaluations and project planning needs, institutional level governance and compliance issues affecting patient registries, and data sharing and collaboration issues allowing multiple institutions and provider groups to participate in shared or federated Meta-Registry arrangements.
- Implementation – Recombinant By Deloitte provides implementation services for our products, as well as open source tools. A Meta-Registry framework can be implemented as a proof-of-concept pilot system for evaluation and to build internal support, or as a production system. Our implementation services also include linking EMRs, legacy data warehouses, and other existing client systems into the Meta-Registry framework.
- Development – Recombinant By Deloitte develops extensions of open source tools and custom applications to meet independent registry challenges for data capture, analysis, or reporting.
- Support – Recombinant By Deloitte offers post-implementation support for the Meta-Registry Solution, or application support for specific elements.
- Central data integration from EMR systems and other data sources through the Meta-Registry Manager
- Standard synchronization interfaces to populate leading data capture systems with read-only clinical data, and to integrate clinical data captured through EDC into the Meta-Registry Manager and Data Trust
- i2b2 Clinical Research Chart (CRC), analytics system, and Recombinant By Deloitte reporting platform to perform statistical analyses or standard reporting across registries
- Packaged reporting systems for compliance related registries such as PQRS, Meaningful Use, and Core Measures
- Support for multiple registry configurations and objectives
- Internal disease management and performance improvement programs
- Project-specific clinical trial registries
- Multi-site registries for Accountable Care Organizations (ACOs), Clinical Integration, or collaborative research efforts
- Externally reported data for public, or payer P4P requirements
- Reduce wasted costs associated with data integration from EHR systems to single-purpose registries and implementation of multiple redundant software tools
- Pre-populating registries with demographics and other standard information can improve registry data quality and reduce duplicate entry of data
- Using Enterprise Master Patient Index (EMPI) across registries can improve trial subject recruitment productivity and enhance coordination of patient participation in multiple projects
- Adopt open standards and tools to allow for collaboration across institutions with differing clinical systems
- Re-use data across registries without compromising human subject protections
- Avoid "proprietary lock-in" from commercial vendor systems through open source strategy and use leading data capture solutions
- Establish reporting systems to meet compliance needs to achieve incentive payments and meet public reporting requirements
For more information about the Recombinant By Deloitte Enterprise Solution for patient registries, contact Recombinant By Deloitte at email@example.com.
Recombinant By Deloitte Products and Services
Data Capture Agent System
Selectrus Performance Analytics Suite
Recombinant By Deloitte Meaningful Use Registry