Project Summary

One of PCORI’s goals is to improve the methods that researchers use for patient-centered outcomes research. PCORI funds methods projects like this one to better understand and advance the use of research methods that improve the strength and quality of comparative effectiveness research.

This research project is in progress. PCORI will post the research findings on this page within 90 days after the results are final.

What is the research about?

People get health care from many places, such as doctor’s offices, hospitals, and pharmacies. Each place creates and stores patient health records. These records include identifiers, or pieces of information that reveal a patient’s identity, such as name, birth date, or address. When sharing or using patient health records for research, organizations usually remove identifiers to protect patients’ privacy.

Having more complete patient records that use data from more than one source could help improve patient care, public health reporting, and medical research. Researchers need ways to link patient data from different sources while ensuring patient privacy. But linking patient records from different sources can be hard without identifiers. Also, too much health information in one record creates a privacy risk, even if there are no identifiers. People with uncommon conditions might be recognized by their health records. In this study, the research team is building and using tools to link patient records from multiple sources without identifiers.

Who can this research help?

Researchers can use the findings from this study when considering ways to link patient data from multiple sources without using identifiers.

What is the research team doing?

The research team is building software to link health data without identifiers. The software is adapting methods that are used to link identified data for this purpose. The team is also using real patient records to confirm that they are linking the correct data together.

The research team is holding focus groups to hear ideas and concerns from patients, healthcare providers, researchers, and technology and policy professionals. A patient is a member of the research team.

Research methods at a glance

Design Elements Description
Goal To develop techniques and guidance to link patient data without identifiers to preserve patient confidentiality
Approach
  • Use tools that successfully link data with identifiers to link data without identifiers
  • Build new tools for cleaning and linking data without identifiers
  • Evaluate the ability of the tools and data cleaning techniques to improve matching accuracy while protecting patient privacy

Project Information

Shaun Grannis, MD, MS
Trustees of Indiana University
$1,027,578
Advancing Privacy-Preserving Record Linkage Methods in the Context of Real-World Data Networks & HIE

Key Dates

November 2017
April 2022
2017

Study Registration Information

Tags

Award Type
Health Conditions Health Conditions These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them. View Glossary
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 14, 2022