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 brief, descriptive projects to assess the feasibility of conducting research using data gathered and shared securely through PCORnet. This project is one of several designed to test the network while addressing priorities identified by PCORI and its stakeholders.

What was the project about?

Heart disease is the leading cause of death in the United States, causing about one in three deaths. Having high cholesterol levels raises a person’s risk of getting heart disease. Statins are the medicine used most often to lower cholesterol. Medicines called PCSK9 inhibitors became available recently. These medicines lower cholesterol but are not yet used widely.

PCORnet created a shared database system that includes information about test results and treatments from patients’ electronic health records, or EHRs. This shared data system includes information from 11 Clinical Data Research Networks that are part of PCORnet. In this project, the team looked at what information was available about these tests and treatments in the database. They wanted to learn whether the database had enough information to be useful for answering patient-centered questions about treatment to lower cholesterol. Patient-centered research respects patient preferences, needs, and values. When research is patient-centered, the patient’s values guide all healthcare decisions.

What were the results?

What types of patients were at risk for heart disease?
The project team looked at records for 4,081,535 patients. Among these patients, 74 percent were white, 11 percent were black, 3 percent were Asian, 1 percent were American Indian or Alaska Native, 0.2 percent were Native Hawaiian or other Pacific Islander, and 11 percent were of unknown ethnicity. The average age was 62. Women made up 51 percent of patients. Also, 30 percent were overweight, and 42 percent had obesity. High blood pressure affected 63 percent of patients, and 30 percent had diabetes.

How many patients who were eligible for medicines to lower cholesterol used these medicines?
The project team separated patients into three risk groups for heart disease. These groups included patients who had

  • High cholesterol
  • High cholesterol but who did not take medicines
  • One of two forms of heart disease, called coronary heart disease, or CHD, or coronary artery disease, or CAD

Just over half of patient records had information about medicines to lower cholesterol. The project team looked at records that included information about medicines. More than half of patients with high cholesterol, CHD, or CAD used medicines to lower cholesterol. Patients with CHD or CAD had the highest use of PCSK9 inhibitors.

Which healthcare providers prescribed PCSK9 inhibitors?
About half of the prescriptions for PCSK9 inhibitors were missing information on who prescribed the medicines. Cardiologists, or heart doctors, wrote most of the remaining prescriptions.

How did prescriptions for PCSK9 inhibitors change over time?
Healthcare providers wrote more prescriptions for PCSK9 inhibitors over time for patients with CHD or CAD than for patients in the other groups. Prescriptions remained low and did not change over time for patients with high cholesterol or a family history of high cholesterol.

What did the project team do?

The project team looked at EHR data from 18 health systems. The team linked information from each system’s records using the PCORnet common data model (CDM). The CDM organizes information into a standard format for researchers to use. The team was interested in patients who received care at the health systems between January 2015 and March 2017.

The project included 4,081,535 patients who fit into one of three risk groups for heart disease. The team collected information about patients’ health, health problems, risk factors for heart disease, prescriptions, and whether patients used medicines to lower cholesterol.

What were the limits of the project?

Some of the database’s information was not specific enough to answer the project’s questions. About half of PCSK9 inhibitor prescriptions did not include who wrote the prescription. The project team did not look at patient records that were missing certain types of information. These records could have added valuable information.

How can people use the results?

Research teams can use these results when planning studies that use the database.

Journal Citations

Article Highlight: In the first several years after new cholesterol-lowering drugs called PCSK9 inhibitors entered the market, their use was generally low, and they were predominantly prescribed by cardiologists for patients with cardiovascular disease. These findings were based on a review of records from nearly 4 million patients with high cholesterol or cardiovascular disease who were identified using electronic health record data from several PCORnet partner networks. The review demonstrated the power of PCORnet to efficiently deliver rapid and reliable responses to stakeholder-prioritized questions. The results were published in the Journal of the American Heart Association.

Project Information

Rhonda Cooper-DeHoff, PharmD, MS
University of Florida Board of Trustees
Rapid-Cycle Project: PCSK9 Inhibitors (Descriptive Analytics)

Key Dates

June 2017
November 2019


Has Results
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: November 10, 2022