Search results

Showing 1 – 11 of 11 results.
Curated

Develop, Test, and Disseminate a New Technology to Modernize Data Abstraction in Systematic Reviews [Methods Study], United States, 2013-2019 (ICPSR 39615)

Released/updated on: 2025-12-15
Geographic coverage: United States
Time period: 2013-01-01--2019-01-01

Systematic reviews combine the results of many studies. In health research, these reviews can help determine which treatments or types of care work best. As part of a systematic review, researchers find and record important study information, such as design and results, from published journal articles. This process, called abstraction, takes time. If researchers make errors during this process, the systematic review may come to incorrect conclusions, which can affect healthcare decisions. Researchers abstract information in different ways. In single abstraction and verification, one person abstracts information and a second person reviews it for accuracy. In dual abstraction, two people abstract information on their own and compare the results.

In this study, the research team created and tested a new software program to help with abstraction. In the new software, researchers place flags within a journal article, displayed next to a data collection form on a computer screen, to easily find abstracted information. The team compared three approaches for abstracting information:

  • Single abstraction and verification with the new software
  • Single abstraction and verification without the new software
  • Dual abstraction without the new software

The research team looked at how accurate the abstractions were and how much time it took to do them.

To access the software and methods, please visit the DAA Bitbucket.

Curated

Improving Clinical Effectiveness Research (CER)/Patient-Centered Outcomes Research (PCOR) Methods for Analyzing Linked Data Sources in the Absence of Unique Identifiers [Methods Study], United States, 2011-2022 (ICPSR 39731)

Released/updated on: 2026-03-16
Time period: 2011-01-01--2022-01-01

Researchers often combine data from different sources, such as insurance claims and health records, to get a better picture of patients' health and use of health care. Researchers use unique identifiers, like Social Security numbers, to connect patient records and make them more complete. But sometimes this approach doesn't work well, especially when records don't have much personal information. Having limited personal data can lead to errors when linking records.

In this study, the research team created new methods to link data sets with limited personal information. Then they compared the new methods with existing ones. They also applied the new methods with real patient data.

Curated

Improving Methods for Linking Secondary Data Sources for Comparative Effectiveness Research (CER)/Patient-Centered Outcomes Research (PCOR) [Methods Study], United States, 2008-2019 (ICPSR 39614)

Released/updated on: 2025-12-15
Geographic coverage: United States
Time period: 2008-01-01--2019-01-01

Researchers often combine patient health data from different sources, such as claims and health records. These data contain personal information, such as names and social security numbers.

In this study, the research team wanted to learn patients' views on sharing and combining health data for research. The team surveyed patients about their views on

  • Sharing health and personal data, such as social security numbers
  • Benefits and risks of data sharing
  • Ways to help patients feel comfortable sharing health data
Curated

Incremental Privacy-Preserving Record Linkage (iPPRL) to Reduce Barriers to Data Sharing and Improve Data Quality [Methods Study], Colorado, 2011-2022 (ICPSR 39738)

Released/updated on: 2026-03-23
Geographic coverage: United States, Colorado
Time period: 2011-01-01--2022-01-01

Researchers often have trouble collecting complete information on patient health, as patients may receive care at different places. Linking patient records from different places may help researchers get a more complete picture.

One way to link records is through personal information, such as names and birth dates. But this method increases risks to patient privacy. Another way, known as privacy-preserving record linkage, or PPRL, masks personal information. But current PPRL methods only work when linking entire sets of patient data, including data that have already been shared and linked. Linking entire data sets takes a long time. Also, sharing the same records multiple times increases data privacy risks.

In this study, the research team developed and tested a new PPRL method called incremental PPRL. This method links only new or updated data rather than re-linking entire data sets.

Curated

Model for Improving Patient Engagement and Data Integration with National Patient-Centered Clinical Research Network (PCORnet) Patient-Powered Research Networks and Payer Stakeholders [Methods Study], United States, 2015-2020 (ICPSR 39639)

Released/updated on: 2026-03-23
Geographic coverage: United States
Time period: 2015-01-01--2020-01-01

Data from healthcare systems, patients and communities, and health plans can support health research. Two types of data sources are

  • Patient-powered research networks, or PPRNs. In PPRNs, patients, families, caregivers, and community members share health data with the network. They work closely with researchers to plan and conduct research.
  • Health plan research networks, or HPRNs. In HPRNs, networks of health plans have access to health claims data from members for research.

By linking patient records across PPRNs and HPRNs, researchers may be able to do more robust research. To link records, researchers use computer programs to connect the records of people in a PPRN with their claims data in an HPRN. Current methods to link records require use of personal information, such as names and dates of birth. But patients may not want to share this information.

In this project, the research team developed methods for linking data from PPRNs and HPRNs without using patients' personal information.

Curated

Realization of a Standard of Care for Rare Diseases Using Patient-Engaged Phenotyping [Methods Study], United States, 2018-2020 (ICPSR 39716)

Released/updated on: 2026-03-11
Geographic coverage: United States
Time period: 2018-01-01--2020-01-01

To diagnose rare genetic conditions, doctors look at patients' genetic data and a phenotypic profile. A phenotypic profile is a record of all the physical traits of a condition. It uses a list of standard terms called Human Phenotype Ontology, or HPO. Doctors and clinic staff do a thorough exam with the patient to create the profile. The exam takes a long time and often more than one visit.

Patients may be able to create phenotypic profiles themselves using surveys. These surveys may take less time than clinic visits. But it is unclear whether patient surveys can provide enough details to correctly identify conditions.

In this project, the research team tested two surveys:

  • Phenotypr. This survey asks patients to describe their symptoms and then matches the descriptions to plain language HPO or clinical HPO terms.
  • GenomeConnect. This survey uses multiple choice questions to asks patients about their health and symptoms.
Curated

Statistical Methods and Designs for Addressing Correlated Errors in Outcomes and Covariates in Studies Using Electronic Health Records Data [Methods Study], Tennessee, 2016-2021 (ICPSR 39726)

Released/updated on: 2026-03-12
Geographic coverage: United States, Tennessee
Time period: 2016-01-01--2021-01-01

Electronic health records, or EHRs, have data on patient traits, health problems, and treatments. Researchers can use EHR data to study how treatments work or which patient traits affect health outcomes. But EHR data can have errors.

The best way to get accurate EHR data is to closely review patients' original records. But reviewing all patient records isn't possible when many patients are in a study. In such cases, researchers can review and correct records for a few patients and use the revised records to adjust data for all patients. But existing methods for using revised records don't address some kinds of errors, such as errors that are related. For example, errors in a treatment starting date can lead to mistakes in the data on length of treatment.

In this project, the research team created and tested new methods to improve the accuracy of EHR data. The new methods corrected records from some patients. Then the team used the corrections to address related errors for all patients.

To access the methods and software, please visit the MeasurementErrorMethods GitHub repository.

Curated

Statistical Methods for Phenotype Estimation and Analysis Using Electronic Health Records [Methods Study], 2016-2021 (ICPSR 39724)

Released/updated on: 2026-03-23
Time period: 2016-01-01--2021-01-01

Researchers can use data from electronic health records, or EHRs, in studies that compare two or more treatments. In these studies, researchers need to identify all patients with the same phenotype. Phenotypes are a person's known traits, like height and weight, or known health problems, like diabetes. However, in EHR data, some data on patient traits or health problems may be missing for some patients.

Missing data in EHRs make it hard to correctly identify all patients with the same phenotype. It's even harder when data are missing due to a patient's health status. For example, patients with uncontrolled diabetes may need more lab tests than patients with controlled diabetes. As a result, researchers who are looking at lab tests may not identify patients with controlled diabetes as having diabetes.

In this project, the research team developed and tested a new statistical method that accounts for missing EHR data to estimate patient phenotypes.

To access the methods and software, please visit the bias_correction GitHub repository.

Curated

Two-Stage Meta-Regression Framework for Precision Medicine Using Data from Clinical Data Research [Methods Study], United States, 2018-2023 (ICPSR 39739)

Released/updated on: 2026-03-23
Geographic coverage: United States
Time period: 2018-01-01--2023-01-01

Network meta-analysis, or NMA, is a statistical method that researchers use to combine results from many clinical trials done within a research network. A research network is a group of scientists and doctors from different places, like hospitals and research centers, who do studies together and share data. Researchers can use NMA to compare how well different treatments work for a specific health problem. But current NMA methods don't work well when comparing three or more treatments across many health outcomes.

In this study, the research team developed new NMA methods to compare three or more treatments that bring on labor to start the process of childbirth across many health outcomes using research network data.

Curated

Unlocking Clinical Text in Electronic Medical Records (EMR) by Query Refinement Using Both Knowledge Bases and Word Embedding [Methods Study], Ohio, 2006-2022 (ICPSR 39734)

Released/updated on: 2026-03-16
Geographic coverage: United States, Ohio
Time period: 2006-01-01--2022-01-01

Electronic health records, or EHRs, have information about a patient's health such as test results, diagnoses, and treatments. EHRs also have clinical notes that doctors and patients can use to track goals and decisions.

Clinical notes may be useful for research or to help improve care. But it's hard to get information from these notes across large groups of patients. The notes may use different ways to describe the same thing. For example, high blood pressure may be called hypertension. Also, the notes may use abbreviations or have spelling mistakes.

In this project, the research team designed and built a search engine to make EHR notes easier to search and use for patient care and research.

Curated

Validating and Generalizing Personalized Treatment Rules by Leveraging Different Data Sources [Methods Study], United States, 2019-2022 (ICPSR 39735)

Released/updated on: 2026-03-23
Geographic coverage: United States
Time period: 2019-01-01--2022-01-01

Researchers can use data on patient traits such as age, health problems, and treatment preferences, to create personalized treatment rules, or PTRs. PTRs provide doctors with guidance on how to treat patients' health problems based on their traits. But PTRs based on a single data source may not apply to all patients. For example, if researchers create a PTR using data from older people with heart failure, it may not apply to younger people with heart failure.

To avoid this problem, researchers can create PTRs by combining data from many sources. PTRs based on many data sources can help guide treatment for patients with different traits.

In this study, the research team created and tested a new method for creating PTRs using data from multiple sources.