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What is Privacy-Preserving Record Linkage (PPRL) and Why Does It Matter?

Publish Date
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August 14, 2023

The emergence of Privacy-Preserving Record Linkage (PPRL) enables government agencies and researchers to connect siloed data using a safe, secure, and ethical framework to formulate longitudinal patient and person histories. It protects patient privacy while enabling researchers to study long-term outcomes, public health and policy, or analyze treatment adherence.

PPRL provides a promising solution as government bodies and researchers delve into healthcare analytics. It plays a critical role in achieving research and public health objectives by tackling health data fragmentation to bridge data silos.

What is Privacy-Preserving Record Linkage (PPRL)?

At its core, Privacy-Preserving Record Linkage (PPRL), often known as tokenization, is a sophisticated data integration technique that enables the linkage of disparate datasets while upholding the utmost privacy of individual records. PPRL operates within a secure and privacy-centric framework, ensuring that sensitive patient information remains protected throughout the linkage process.

Why is Privacy-Preserving Record Linkage (PPRL) Important?

Privacy-preserving record linkage protects patient privacy during data linkage, enhances accuracy, enables diverse insights, aligns with ethics, builds trust, enables longitudinal studies, and optimizes resource allocation. It balances data linkage and privacy responsibly, redefining healthcare insights.

Preservation of Patient Privacy: Safeguarding patient privacy is paramount in health data management. PPRL ensures data linkage without revealing sensitive attributes, mitigating unauthorized access and potential breaches. Employing advanced de-identification techniques, PPRL irreversibly transforms data, preventing re-identification. This balance between linkage and privacy empowers responsible data analysis while upholding ethical standards.

Accuracy & Data Quality: PPRL facilitates accurate and reliable data linkage by enabling deduplication without exposing patient identifiers. The ability to use fine-grain features and attributes, combined with modern solutions that use machine learning models, result in accurate disease prevalence, particularly in care settings and conditions that have a high degree of care fragmentation.

Cross-Domain Insights: Linking data across domains is vital for comprehensive insights, efficient resource allocation, and informed decision-making. PPRL empowers researchers and policymakers to discover insights from diverse datasets without compromising privacy, thus fostering collaborations and accelerating advancements in healthcare research.

HIPAA-Compliant Framework: PPRL implementations within the health sector must operate within a HIPAA-compliant framework, specifically meeting the Expert Determination Standard of the HIPAA Privacy Rule §164.514(b)(1). This standard requires that an expert performs a statistical assessment of the PPRL tokens to confirm that it poses a very small risk that it can be used alone or in combination to identify the individual.

Data Reuse in Accordance with FAIR Principles: Enabling PPRL within databases and repositories, enables data linkage across data repositories and enclaves to be re-used without needing to take a wholly centralized data approach. This data reuse in accordance with FAIR principles, ensures that disparate datasets can still be Findable, Accessible, Interoperable, and Reusable (FAIR). This data minimization approach also ensures only minimum necessary linked data would need to be pooled and aggregated to formulate a relevant dataset.

Examples of Privacy-Preserving Record Linkage (PPRL)

PPRL empowers use cases that extend across various domains within healthcare. It transforms how researchers and policymakers derive insights while respecting individual privacy. Use cases that exemplify its significance include:

Public Health Analysis: PPRL can be utilized to link various health databases to monitor disease prevalence, assess treatment outcomes, and evaluate the efficacy of public health interventions. For instance, researchers can study the impact of global pandemics to shape health policies while maintaining patient anonymity.

Clinical Trials: By linking electronic health records to trial criteria, records match precisely without compromising privacy. This accelerates patient recruitment, preserves data confidentiality, and optimizes resource use, enhancing both research efficiency and ethical considerations.

Healthcare Policy Evaluation: Government agencies can leverage privacy-preserving record linkage to assess the effectiveness of healthcare policies by linking datasets from hospitals, insurance providers, and public health agencies. This enables comprehensive analysis without violating patient confidentiality.

Data Linkage through Datavant

Researchers and government agencies can access valuable data without compromising on security and privacy by leveraging PPRL through Datavant, a FedRAMP authorized solution.

Datavant drives ubiquity in PPRL-based data access enabling organizations to securely tokenize health data, facilitate secure linkage across disparate internal & external datasets while ensuring patient privacy and HIPAA compliance.

  • Connect Across Institutions: Agencies can protect, link, and safely exchange information across government institutions using de-identified data, such as supporting NIH’s adoption of PPRL through the NCATS National COVID Cohort Collaborative (N3C).
  • Accelerate Policy and Research Initiatives: Linked data creates longitudinal views of patient populations that unlocks critical policy and research initiatives, with less time and reduced costs.
  • Enrich with Real-World Data: Agencies can ascertain population exposures, outcomes, and demographic features by securely linking real world data to patient data.

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