Electronic health records (EHRs), administrative claims databases, and other patient data are important sources of healthcare information that can be used for research. However, they live in separate systems, which means researchers typically can’t easily combine insights to understand a complete picture of the patient experience. These sources also contain sensitive information that must be protected. To address this challenge, PCORnet leaders have embraced a technique called privacy-preserving record linkage (PPRL) to link records from different databases while protecting the privacy of patients.
But why should patients care about PPRL? Here are five key ways the implementation of PPRL in PCORnet will bring meaningful benefits to patients:
- Maintaining the highest protection of patient privacy: PPRL uses unique codes, such as numbers, to represent sensitive data. This ensures that patients can rest easy knowing that linking these data sources will not compromise to their confidential data, given that data is anonymized and de-identified before it is ever used in research.
- Improved data accuracy: PPRL helps to improve the accuracy of patient data by matching records across different databases, eliminating duplicates and ensuring that the most up-to-date information is used in research. For patients, that means that results from research powered by PCORnet will be even more reliable than they are to date.
- Findings that more fully reflect the population: PPRL enables PCORnet researchers to access a larger and more diverse set of patient data, leading to more comprehensive and robust research findings. Patients should feel confident that research results hold true for people who share their race, ethnicity or background. PPRL helps capture that diversity.
- Better decision making: PPRL helps to improve decision making by providing a more complete picture of patients’ health experiences, as data from multiple sources can be linked and analyzed. As a result, gaps in our understanding are reduced, leading to more comprehensive assessments and informed care choices.
- A gateway to precision healthcare: PPRL helps researchers tap into much broader data so we can understand the nuance across different populations and settings. When that nuanced data is combined with sophisticated analytic models, it can help us deliver healthcare in a very precise and personalized way. That means clinicians can potentially diagnose patients earlier, tailor therapies to the individual and better manage chronic conditions.
“As patients, we know our lived experience is so much richer and more diverse than what is depicted in a single electronic health record,” said Greg Merritt, patient partner for PCORnet. “I am really excited about the promise of PPRL to unlock some of that rich detail so that clinicians can partner with patients like me, do research that will protect my privacy, ask meaningful research questions, and ultimately, find the course of treatment that is actually for me—not just my EHR.”
Want to learn more about PPRL in PCORnet? Check out this recent article.