By Nancy Kadish, Vice President, Clinical Research and Data Abstraction at Ciox

Patient registries are emerging as a powerful tool in the Federal push for better population health. Some experts have called disease registries (along with EHR use and patient portals) one of the three pillars of IT infrastructure needed to improve population health.

As the popularity of registries grows, Federal payers and providers increasingly look to them as a way to track broad population trends and search for cures. Organizations like Medicare, Medicaid and the VA can maximize the power of registries with more meaningful data; Medicare and Medicaid to provide better care through more informed population intelligence, and the VA to double down on efforts like the Veterans Affairs Central Cancer Registry (VACCR) that identify illness clusters and anticipate long term needs.

The way to get that data: better health data partnerships with the private sector, in forming and utilizing registries.

What is a Registry?

The National Institutes for Health defines a patient registry as a collection of standardized information about a group of patients who share a condition or experience. Research organizations and academic clinical institutions generate these data sets, often using Federal funds.

Organizations create registries to collect data (clinical or otherwise) to evaluate outcomes for a population defined by a particular disease, condition, or exposure. Registries also help Federal agencies to learn about population patterns and disease development, to recruit patients for clinical trials, and to develop drugs and treatments. For example, registries are used to identify those in its population who use tobacco, who have cancer, or who have not had a colonoscopy or immunization.

These are powerful tools, and thanks to Government merit-based incentive payment systems, they continue to grow in popularity. Eighty-five percent of Medicare hospital fee-for-service payments are tied to quality or value through programs like the Hospital Value-Based Purchasing Program, the Merit-Based Incentive Payment System, and the Hospital Readmissions Reduction Program. With growing trends in disease prevention management, evidence-based Healthcare and population health, the time has arrived for data-driven health.

The Future and the Challenge

The more registries affect our long-term population health policies and strategies, the more critical the data within those registries becomes. Today, registries hire credentialed and educated professionals in the field. The individuals building our registries in both the public and private space are highly specialized in terms of clinical and technical knowledge. They are physicians, Federal Healthcare specialists and experts on niche diseases or population trends.

Where perhaps the expertise drops off, though, is in the use and maintenance of complex data systems. What Federal Health organizations need today are subject matter experts on accreditation compliance requirements, on the flow of data throughout an enterprise, and on sources of truth in data; to build and best utilize better registries, we need both physicians and data scientists.

Take, for example, the changing role of the National Cancer Registrar’s Association certified tumor registrar (CTR). Given the rapidly changing field of oncology, the increasing use of technology and the shifting landscape of Healthcare policy, these CTRs must continuously expand their knowledge and grow as professionals to keep up. The role is evolving into something far more data-driven.

The Role of the CTR

With the increasing use of technology and the related surge in available data, the role of the CTR is steadily becoming more focused on data auditing and analysis. CTRs today must extract important details hidden within unstructured data or validate data extracted utilizing natural language processing (NLP) and other automated processes. Rising in capability from population health specialist to qualified statistician is a challenge CTRs must meet to make an even greater impact on improvements in quality of care, treatment advancements, and better patient outcomes.

However, to get there, CTRs – and similarly placed registrars throughout the Federal Healthcare landscape – must learn to get the most out of data. It’s an exercise in best practices for data collection and abstraction. Registrars must learn to manage the collection, abstraction and synthesis of data in patient-reported outcomes and physician-reported outcomes alike, and they must work across manual abstraction techniques, countless EHR interfaces, and data flowing on the Health Information Exchange. Navigating this in the name of a useful data set is not easy.

Recommendations for Government and Industry

Government organizations should look to the private sector for data partners, to leverage the latest in health data technology and ensure top-shelf data quality. Leading health data organizations use AI, NLP and a host of machine learning technologies to parse registry software, to bridge EHR interfaces, to get to data definitions and sources of truth, to set and follow abstraction guidelines and to monitor for quality.

The right data partners – health data and technology companies with experience building and analyzing vast data sets for business intelligence — can help Federal organizations like the VA, Medicare and Medicaid to implement these complex systems and navigate between the execution of population health and the execution of data sciences. At its surface, the power of the registry is becoming evident in the age of big data. We can better serve our populations with better longitudinal health data. However, the complexity of collecting, abstracting and monitoring this information for insights is a job today served most effectively through collaboration between private and public initiatives.

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