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This project has results
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.
Doctors use molecular tests to get a better understanding of a patient’s cancer. These test results help doctors figure out if the cancer is one that is likely to respond to a treatment called targeted molecular therapy. Molecular tests that are related to targeted therapy are sometimes called companion diagnostic tests.
PCORnet created a shared database system that includes information about test results and treatments from patients’ electronic health records. 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 molecular 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 molecular tests and treatments. Patient-centered research respects patient preferences, needs, and values. When research is patient-centered, the patient’s values guide all healthcare decisions.
The project team included electronic medical record data linked to the database for 86,154 patients from 11 research sites in 10 states. Data were from 2013 to 2016. Patients had many types of cancers.
The project team used different methods to answer each question. They looked at
Some of the information in the database wasn’t specific enough to know exactly which molecular test or therapy patients received. The project team used patient medical records to find the information they needed.
Future research could make data from the database more specific to help research teams find information about molecular tests and treatments.
Research teams can use these results when planning studies that use the PCORnet CDM dataset to understand molecular tumor testing and therapy.
To use PCORnet to document the patterns of use of molecular tests and molecular targeted cancer therapies for patients with solid tumors and to test the capacity of PCORnet to describe cancer pathology, test results, cancer treatment, and outcomes
Aim 1. Frequency of molecular tests and associated cancer treatment
Aim 2. Concordance between molecular test results and associated treatment
Aim 3. Completeness of data on molecular tests, treatments, and outcomes within EHRs relative to Medicare claims data
The project included tumor registry and electronic health record (EHR) data from 86,154 patients linked using the PCORnet common data model (CDM). The CDM organizes data into a standard structure for use by researchers. The patients had single solid tumors and received care from 1 of 11 research sites in 10 states between 2013 and 2016.
The project had four aims:
Aim 1. The project team examined how often common molecular tests and molecular targeted therapies to treat patients with cancer are recorded in the CDM.
Aim 2. In a subset of patients who had molecular tumor tests for colorectal cancer at two PCORnet research sites, the research team reviewed hospital tumor registry and EHR data to determine whether molecular targeted therapy was in concordance with molecular tests.
Aim 3. In a subset of patients with breast cancer, the project team assessed the completeness of information about molecular tumor tests and molecular-targeted therapy within the PCORnet CDM data by comparing CDM data plus Medicare claims data with CDM data only and Medicare data only.
Aim 4. Based on results from aims 1–3, the project team described how well the CDM captured diagnoses, therapies, tests, test results, and treatment outcomes for research purposes.
Aim 2. Between 16% and 18.7% of patients with colorectal cancer at the two sites received molecular targeted therapy. All 36 patients that received molecular targeted therapy received the therapy concordant with their molecular tumor test results.
Aim 3. CDM data plus Medicare claims data showed that 60% of patients had molecular tumor tests compared with 49% of patients when using CDM data only. CDM data plus Medicare claims data showed that 6.7% of patients had molecular targeted therapy compared with 4.4% of patients when using CDM data only.
Aim 4. The project team successfully and rapidly obtained CDM and tumor registry data from many sites in multiple data networks.
The CDM data rely on standardized codes that may not be specific enough to identify molecular tests and molecular targeted therapy. The project team had to review underlying patient EHRs to retrieve these data.
The project team linked CDM data with both tumor registry and EHR data and used these combined data to describe use of molecular tumor tests and molecular targeted therapy. The team used the combined data to investigate concordance between molecular tumor test results and the targeted therapy patients received. The team also demonstrated the importance of linking Medicare claims data to CDM data to ensure data completeness.
Future projects could employ natural language processing or structured pathology data to improve the identification of specific molecular tests and targeted treatments.