Synchronizing real-world data to better protect public health

As we venture further into the digital age, there is a proliferation of data available today that, when paired with gains in technology, is leading to amazing advances in healthcare, including treatments for diseases once thought incurable, gene and cell therapies, and more personalized medicine. Government agencies can leverage this same data and technology to preserve public health in a number of ways: 

• Disease surveillance - Monitoring real-world data (RWD) from sources such as medical and pharmacy claims, electronic medical records (EMRs), labs, and more can aid government agencies in understanding disease spread, predicting potential outbreaks and allocating resources when threats to public health arise from outbreaks, such as COVID-19, Monkeypox or RSV.
  
  
• Drug safety - The steady advancement of pharmaceutical treatments has created a need to track the real-world impact of FDA-approved drugs and respond to any safety concerns.
  
  
• Health outcomes research - With conditions such as diabetes, obesity and cancer impacting tens millions of Americans across the country, government agencies can leverage RWD to analyze outcomes to help support researchers, advance treatments and improve equity in care.
  
  
• Alternative payment and care models - The advances in medical treatments can be lifesaving, but some are also unproven and very expensive. To continue to offer the healthcare coverage the most vulnerable citizens require, government agencies must investigate alternative payment methods and monitor real-world outcomes to justify the cost of such treatments.

Despite the valuable insights, innovation and improved quality of life that can be derived from novel RWD, a White House report released earlier this year entitled the National Strategy to Advance Privacy-Preserving Data Sharing and Analytics (PPDSA) found that adoption has been slow.¹ Even across government agencies, healthcare data is stored in silos and sharing is difficult, thus, hampering collaboration. The challenges multiply when incorporating third-party data, as to do so requires the accurate resolution of a patient’s identity across disparate sources while maintaining privacy. Only in this way can data be made fully interoperable, a key challenge reinforced in the report.

Addressing privacy-preserving data sharing concerns

Privacy-Preserving Record Linkage (PPRL) is one of the methods mentioned in the report that allows for data sharing while maintaining privacy. While a few PPRL solutions have emerged in the market, there are certain gold standards that enable accurate patient mastering and de-identification capabilities and also provide the ability to synchronize disparate data across multiple sources into a completely interoperable and HIPAA-compliant view of a patient’s healthcare journey.

The HealthVerity PPRL solution, Identity Manager, has been granted Federal Risk and Authorization Management Program (FedRAMP) authorization, was ranked as the most accurate PPRL technology in an National Institutes of Health (NIH) study and is being deployed by a number of government agencies to make their data interoperable, including the Centers for Disease Control and Prevention (CDC), Food and Drug Administration (FDA), and the National Cancer Institute (NCI).

With HealthVerity Identity Manager, patient records are de-identified behind the data owner’s firewall and assigned a universal patient identifier, known as a HealthVerity ID (HVID), in lieu of personally identifiable information (PII). Beyond simply replacing the PII, HealthVerity matches patient identities to a continuously updated referential database of over 200 billion healthcare and consumer transactions and leverages machine learning techniques to ensure the highest accuracy rate when assigning an HVID from our master patient index. We also utilize probabilistic matching, which can better handle the inherent noise in RWD, as opposed to requiring an exact match often employed by legacy technologies. This results in 10x greater accuracy than other de-identification solutions, creating a single source of truth that reliably syncs patient records across unlimited data sources. We utilize an independent third-party reviewer to ensure all data is HIPAA compliant, via Expert Determination. This synchronized process makes the data fully interoperable and research ready from day one.   

Public health agencies have made great strides over the past several years in incorporating PPRL and other data sharing methods into their research, surveillance and public health efforts. This includes current efforts such as the FDA Sentinel Innovation Center, which is leveraging EMRs and claims data for drug surveillance; CDC, which is using PPRL to sync vaccination data from state and local health agencies; or NIH, which is utilizing RWD as a backbone to the National COVID Cohort Collaborative (N3C). Recent solicitations also point to the government continuing to invest in this critical data infrastructure, from the CDC’s new Center for Forecasting and Outbreak Analytics, to NIH’s All of Us Center for Linkage and Acquisition of Data (CLAD), but the opportunities to use PPRL to advance public health could be endless. 
 
In our five-part series, we will delve deeper into each of the above-mentioned ways government agencies can leverage RWD for the public good while maintaining privacy by utilizing a synchronized approach.

Click here to learn more about how HealthVerity can support your agency's data initiatives.

¹ Executive Office of the President of the United States. National Strategy to Advance Privacy-Preserving Data Sharing and Analytics. March 2023. https://www.whitehouse.gov/wp-content/uploads/2023/03/National-Strategy-to-Advance-Privacy-Preserving-Data-Sharing-and-Analytics.pdf