Payers, providers, patients and pharmaceutical companies all want to understand the value of specific treatment – and patient registries can help them do that. These online data platforms give patients and providers a single place to record information about their diagnosis, condition and treatment experience.

These registries are already being used by stakeholders across the industry to define value, both clinically and economically in an effort to improve the overall quality of care for current and future patients in a variety of ways:

  • Providers and hospital systems can use the data to demonstrate their quality of care, improve the clinical outcomes of patients and enable personalized medicine through genetic testing to define more narrow target patient populations
  • Payers can use them to evaluate the quality and cost of care for increasingly narrow subsets of patients
  • Pharmaceutical and medical device companies can use them to demonstrate the value of their products and services, and bring new products to the market more quickly and with a higher likelihood of clinical and economic success.
  • All stakeholders can harness these data sources to achieve greater ease and lower costs in achieving these goals.

 Standardization is the next step

Going forward registries will play an even greater role as hubs that bring together communities of patients, providers and payers to gather and share real world evidence insights from clinical, economic and observational data to support both clinical care optimization as well as drug development. However, as with all digital patient data, the industry continues to struggle with how we can scale the benefits of registries to ensure this information can be shared and accessed by all of the stakeholders who can benefit. Creating interoperability between registries is a challenge that won’t be easily solved, but we can achieve incremental improvements through the standardization of registries.

In many cases, large provider organizations and professional associations have more than one registry, each started by different groups using different data sets. To gain efficiencies, these organizations need to develop a common data model for all of their registries for use on a common platform. This move will enable stakeholders to look at the same patient across multiple registries, and leverage and reuse the data to greater benefit. It also allows them to examine data from an enterprise standpoint, and to feed electronic health records (EHRs) into the registries.

At the hospital and provider levels, this has the potential to help with quality improvement registries, which are currently labor intensive, involving significant manual data entry. Current registries also require a huge amount of manual data entry which can limit their adoption and ability to scale. Companies can automate some of these steps by harnessing the modern electronic record infrastructure developed to support electronic health records (EHRs), enabling them to increase external integration and interoperability, while improving workflows and governance.

Data integration is key to unlocking the productivity puzzle in the world of registries. When we achieve this goal we will have access to a vast store of information and analytics opportunities to more gain greater insights into the relevance of our quality of care measures. To do this, data must be pulled from multiple sources in a consistent manner, including EHR data, patient data and research and financial information from trials and payers.  

The concept of real-world evidence hubs centered on disease-specific communities holds great promise as healthcare stakeholders work to demonstrate value. These hubs can form the basis of the ”registry of the future,“ leveraging data already stored in EHRs to create an information framework for answering healthcare stakeholders’ questions how to definitively measure quality of care.