Results Summary

PCORI funded the development of PCORnet®, the National Patient-Centered Clinical Research Network, to make research faster, easier, and less costly to conduct. PCORnet is made up of Partner Networks of healthcare systems, patients and communities, and health plans that harness the power of large amounts of health data.

PCORI supports projects, designed in partnership with federal funding organizations, to improve the quality of data used in clinical research. This project is one of several designed to assess the feasibility of linking patient-level data from research networks with other sources, including disease registries and health plans.

What was the project about?

Patients whose heart valves don’t work correctly may need a heart valve replacement. Patients in the United States who get a heart valve replacement become part of the Transcatheter Valve Therapy Registry, or TVTR. Patient registries store data about people with a specific health problem. Patient information in the TVTR is used in research studies. It’s also used to monitor the heart valve devices used in valve replacement surgery. But the TVTR doesn’t always include information about patients’ health after surgery. Adding that information would make the TVTR more useful.

PCORnet provides secure access to information about test results and treatments from patients’ health records. This shared data includes information from eight sites in a clinical data research network that’s part of PCORnet. In this project, the team had three goals:

Goal 1. Link the TVTR data with PCORnet data and Medicare data for patients who had surgery to get heart valve devices.

Goal 2. See whether the PCORnet and Medicare data had other data not currently in the TVTR.

Goal 3. Create a way to add results from echocardiograms to the PCORnet data, Medicare data, and TVTR. Echocardiograms use sound waves to take pictures of the heart.

What were the results?

Goal 1. The project team successfully linked TVTR and PCORnet data for 96 percent of patients who had surgery to get heart valve devices at one of the eight hospitals.

Goal 2. The project team found that combining PCORnet and Medicare data with TVTR added more information about patients’ health. For example, PCORnet and Medicare data added details about events that happened in the hospital, like strokes and irregular heartbeats. Both PCORnet and Medicare data also added details on events that happened after patients left the hospital, like strokes and death.

Goal 3. The project team created a way to link echocardiogram results into the PCORnet data. The team found that combining this new PCORnet data with TVTR data added more information about patients’ health.

What did the project team do?

The project team matched PCORnet health record data with the TVTR to create linked records for patients who had surgeries to get heart valve devices. Patients had surgery between 2011 and 2016. The team used a secure environment to protect patients’ information. The team also got a copy of the TVTR from 2011–2016 linked with Medicare claims data. They linked these records to records in the TVTR database.

What were the limits of the project?

PCORnet data don’t use a unique patient ID. This means that it’s hard to track patients if they get care at a different place from where they had surgery. Medicare data were only available for patients over age 65.

Future projects could have doctors review medical charts to see why each data source reports on different problems.

How can people use the results?

Researchers can use the database when doing studies about patients who had heart valve device surgery.

Project Information

Maurice E. Sarano, MD
Mayo Clinic
$399,999
Improving Data Completeness and Expanding Available Data Elements in the TVT Registry through the use of Electronic Health Record Based Data: Linking the TVT Registry and PCORnet

Key Dates

May 2018
2017
2018

Study Registration Information

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The state where the project originates, or where the primary institution or organization is located.

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Last updated: December 27, 2021