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?
Data on patient health can come from many sources, such as health insurance claims or hospital records. Record linkage is the process of linking the same patient’s records across different data systems. This process can help researchers collect complete information on patients, leading to robust research results. But linking records can create privacy concerns because researchers must use information that can identify a patient, such as name and date of birth, to link records correctly. Also, in large studies that link records, it isn’t always practical to ask every patient for permission to use his or her data.
Currently, the standard way researchers link records is to obtain full access to all data. Because getting full access may be difficult, researchers may choose study designs that don’t use linked records. Researchers need a way to link patient records and maintain patient privacy.
In this study, the research team wants to learn
- What is most important for patients to know about record linkage and privacy
- What information patients find acceptable to share during record linkage
- The best way to communicate information on the risks of record linkage to patients
- The minimum amount of personal information needed to link records accurately
- How to calculate the potential risk in a standard way that research teams and organizations can use to plan and discuss study designs and to discuss them with the public
- The trade-offs involved in using more versus less personal information to link records
The research team is using findings from this study to design free software that supports record linkage and respects patients’ privacy.
Who can this research help?
Results may help researchers considering better ways to link patient records across data systems.
What is the research team doing?
This research project has three parts. In part 1, the team is designing a framework for linking patient records while also respecting patients’ privacy. This framework is based on the idea that using only certain types of personal information a bit at a time is the best way to balance accuracy and privacy.
In part 2, the research team is developing a way to measure privacy risk, or the risk that a patient’s identity might become known. The team is using a method that looks at the number of people in the population who share the same identifying information. The smaller the number, the higher the risk of revealing a patient’s identity. Then the team is testing the new method in a case study linking two different sets of data from PCORnet. PCORnet is made up of partner networks of healthcare systems, patient networks, and health plans that share large amounts of health data. The case study is helping the team learn the amount of personal information needed to accurately link people’s records. Based on findings from parts 1 and 2, the team is designing prototype software that will be useful to those developing systems to support record linkage.
In part 3, the research team is recruiting people for two different groups to discuss what patients need to know about record linkage and use of their data. The first group includes patients. The second group includes legal and research experts as well as experts on how to protect the rights of people who take part in research. The groups are helping the research team figure out what types of information are acceptable to use in record linkage and how to communicate this information to patients. The groups are also writing documents that researchers can use to support record linkage, including a patient-friendly privacy statement and data use agreement.
Patients, experts in research protection rights, and lawyers take part in all phases of this research.
Research methods at a glance