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New PCORnet® Playbook Case Studies: Patient-Centered Health Research in Action

Posted on by Jodi Snare

More than 300 research projects have used the PCORnet® infrastructure to support patient-centered health research that helps patients, caregivers, clinicians, health systems, and policymakers make better-informed healthcare decisions.

The new PCORnet® Playbook Case Studies module highlights real-world examples of how PCORnet® Study teams have:

  • Used the PCORnet® Common Data Model to quickly identify potential participants, assess study outcomes, and confirm the generalizability of their findings.
  • Collaborated with the research-ready community of PCORnet to design studies that reflect patient perspectives and support broader dissemination.
  • Leveraged research expertise within the network to conduct multi-site studies and accelerate their research to deliver fast, trustworthy answers.

Researchers who partner with PCORnet have access to representative health data, research expertise, and patient-informed insights. Whether you are a new or an experienced researcher, the PCORnet® Playbook is your guide to using PCORnet.

In addition to case studies, the PCORnet® Playbook includes:

  • Introduction to PCORnet – Provides an overview of the PCORnet infrastructure and the types of research the network supports.
  • Getting Started with PCORnet – Outlines how to access network resources through the PCORnet® Front Door.
  • Using PCORnet to Power Your Research – Highlights no-cost services provided by the PCORnet® Front Door team.
  • Sharing Your Research Results – Explores approaches to dissemination and implementation in PCORnet® Studies.

Read the full PCORnet® Playbook.

Research projects powered by PCORnet® span a range of sizes, designs, therapeutic areas, populations, and funding sources, including PCORI, the National Institutes of Health (NIH), and industry sponsors. All research teams started with the same step: reaching out.

When you are ready to get started, contact the PCORnet® Front Door to connect with experts who can help you access PCORnet resources and move your research project forward.

Mark your Calendar! PCORI to Announce New Funding Opportunities for PCORnet® Studies

Posted on by Jodi Snare

On April 1, PCORI will release the Broad Pragmatic Studies (BPS) PCORI Funding Announcement (PFA) to support high-quality patient-centered comparative clinical effectiveness research (CER). Category 3 supports PCORnet® Studies with direct costs of up to $12 million.

PCORnet® Studies are defined as those that:

  • Include two or more PCORnet® Clinical Research Networks (CRNs)
  • Share study progress and performance metrics
  • Exchange best practices with the network to promote continuous learning and improvement
  • Leverage the PCORnet® Common Data Model as appropriate

PCORI has identified four specific areas of emphasis for this PFA: addressing obesity; diabetes prevention, care and treatment; management of urogynecological and pelvic pain; and pain management for individuals living with Sickle Cell Disease.

Letters of Intent (LOIs) are due April 28.  

Ready to learn more and apply?  Take these three steps to prepare:

  1. Contact the PCORnet® Front Door as soon as possible.  All applicants submitting to the BPS Category 3 PFA are required to contact the PCORnet® Front Door prior to submitting their LOI. The PCORnet® Front Door can advise on study feasibility and costs associated with using PCORnet, provide data to inform study design, offer best practices for stakeholder engagement, and more.
  2. Register for the April 9 PCORI Applicant Town Hall to learn more about this PFA and how to submit a responsive LOI and application.
  3. Check out this webinar for an overview of PCORnet and the specific requirements for the Category 3: PCORnet® Studies option in the BPS PFA. 

On April 1, PCORI will also release a PFA on  Improving Methods for Conducting Patient-Centered Comparative Clinical Effectiveness Research PCORI Funding Announcement.

This PFA seeks to fund studies that address high-impact methodological gaps in patient-centered CER and might lead to improvements in the strength and quality of evidence generated by CER studies. Applicants considering this PFA are encouraged to partner with PCORnet® Network Partners.

The preannouncement provides potential applicants additional time to identify collaborators, obtain patient and partner input and develop responsive, high-quality applications.

For the Cycle 2 2026 Methods PFA, PCORI has identified the following areas as program priorities:

  • Methods To Support the Use of Patient-Centered Measurement in Patient-Centered CER
  • Methods To Support the Use of Real-World Data (RWD) in Multi-Site Patient-Centered CER (formerly Methods to Support Data Research Networks)
  • Methods To Improve the Use of Artificial Intelligence (AI) and Machine Learning (ML) in Patient-Centered CER
  • Methods To Improve Study Design in Patient-Centered CER

To learn more about this funding opportunity, attend the PCORI Applicant Town Hall on April 6, noon – 1 pm (ET).

Additional PFAs opening April 1 (with LOIs due April 28) include:

 

Title LOI Due Date Applicant Town Hall Date
Broad Pragmatic Studies (BPS) PCORI Funding Announcement (PFA) April 28 April 9, 11:30 am – 1 pm (ET)
Learn more 

Category 3 webinar
Improving Methods for Conducting Patient-Centered Comparative Clinical Effectiveness Research PCORI Funding Announcement April 28 April 6, noon – 1 pm (ET)
Learn more
Addressing Sensory Health Needs Across the Lifespan April 28 April 7, noon – 1 pm (ET)
Learn more 

 
Phased Large Awards for Comparative Effectiveness Research PCORI Funding Announcement April 28 April 8, 11:30 am – 12:30 pm (ET)
Learn more 

Contact the PCORnet® Front Door to learn how PCORnet can support your patient-centered research.

New Resource Provides Insights on PCORnet® Clinical Research Network Site Capabilities

Posted on by Jodi Snare

A new resource that provides a snapshot of site capabilities for national-scale patient-centered research is now available. The PCORnet® Clinical Research Network Site Profiles can help researchers understand site capacity and resources including:

  • Population characteristics, such as types of patients, care settings, and location data
  • Current PCORnet® Study participation
  • Patient recruitment methods and institutional procedures
  • Data linkages

PCORnet® Clinical Research Networks (CRNs) are groups of healthcare institutions from across the U.S., from large academic health centers to community clinics, united by a commitment to speed patient-centered research.

The PCORnet® CRN Site Profiles can help inform collaboration and research studies from proposal development to implementation by providing a snapshot of the available populations and site capabilities.

The PCORnet® CRN Site Profiles help illustrate the power of PCORnet as a full-scale research infrastructure designed to make studies faster, easier, and more impactful.

This new tool is one of many resources developed to support researchers interested in leading patient-centered research studies. Other available resources include:

Contact the PCORnet® Front Door to learn how PCORnet can support your patient-centered research.

PCORnet® Research Project Laid the Foundation for Studies Using Patient-Reported Outcomes to Improve the Health and Health Care of Patients

Posted on by Jodi Snare

In 2018, the Patient-Centered Outcomes Research Institute® (PCORI®) funded a rapid-cycle research project called the Implementation of Patient-Reported Outcomes Measurement in Routine Clinical Practice for Heart Failure Patients in PCORnet.

Led by Justin Bachmann, MD, MPH, at Vanderbilt University Medical Center (VUMC), the study has had a lasting impact – expanding the use of patient-reported outcome measures (PROMs) and improving care across treatment areas. It also laid the foundation for Bachmann’s study published in 2025 in the Journal of the American College of Cardiology.

In a recent Q&A session, Dr. Bachmann reflected on how the rapid-cycle research project inspired him and his team to develop the Vanderbilt Patient-Reported Outcomes Measurement System (VPROMS) – a system that leverages data insights from more than 3 million PROMs collected in routine clinical practice to drive meaningful improvements in care.

What were your initial research questions and how did you imagine the results might inform healthcare delivery?

The project’s primary goal was to integrate the Kansas City Cardiomyopathy Questionnaire (KCCQ-12), a validated PROM that assesses heart failure symptoms and quality of life, into electronic health records at Vanderbilt, Duke, and UPMC. At the time, the KCCQ-12 was used primarily in clinical trials. We aimed to build the infrastructure needed to collect this measure in routine clinical practice. That shift was important because PROMs can serve as an “x-ray” of the patient history.

What led you to use PCORnet for implementing PROMs in clinical care for heart failure research?

The biggest draw was the PCORnet® Common Data Model (CDM) and its potential to scale. We already knew PROMs add value – when used in clinical practice, they can improve patient care and satisfaction.

The challenge is collecting and studying PROMs in routine clinical practice, especially across multiple sites. Standardizing the data is difficult. A PROM includes multiple data elements, and the scoring logic required to calculate a final score in the EHR can be complex.

The PCORnet® CDM gave us a way to standardize those data elements. It also allowed us to link PROMs data with other real-world data, such as lab values, that were already standardized in the EHR, which was fantastic.

While the PCORnet® CDM provides strong data references for PROMs, aligning the electronic health records across three different institutions was still a heavy lift. The Coordinating Center for PCORnet® played a critical role, serving as a bridge between the clinical and research perspectives and the technical capabilities of the PCORnet® CDM. Their support was essential to the project’s success.

What challenges did you encounter during the initial study?

Initially, I planned to fly to Duke and UPMC to meet with Epic developers and investigators, but this was in 2020, and COVID-19 halted business travel. As a result, the Coordinating Center stepped in to help facilitate outreach and collaboration across sites.

We had numerous virtual meetings to address data standardization. For example, one site was using “PRO response number” while another was using “PRO response score,” so we had to reconcile those differences to ensure consistent scoring. We also encountered early issues with the scoring logic, which the Coordinating Center helped us resolve.

Ultimately, working through the process of addressing all these standardization challenges was a major output of the study.

How did your findings from the initial study influence the design and focus of the subsequent study?

The initial project built the infrastructure – the “pipes” – needed to collect and standardize these data, and we sustained that framework at Vanderbilt. We continued collecting the KCCQ-12 for the next 5 years, ultimately building one of the largest real-world data sets in the world focused on outcomes that matter to patients.

That first project tested feasibility. Could we reliably collect these measures in routine care? Could we standardize them across systems? And was the KCCQ-12 performing as expected with other measures we were collecting, such as the PROMS-10 and the PHQ? The answer was yes – the PROMs behaved as anticipated.

In the subsequent study completed in 2024, we pivoted from feasibility to prognostic utility. Instead of asking whether we could collect the data, we asked whether the KCCQ-12 could predict clinical outcomes. It turns out that it can.

In fact, the KCCQ-12 emerged as the strongest predictor of hospitalizations and mortality among all other EHR-collected variables for heart failure patients in routine clinical practice. Without the initial PCORI-funded rapid-cycle research project, we would not have been able to sustain the data collection necessary to conduct the follow-up study.

Since then, we’ve strengthened and expanded the framework. Lessons from the rapid-cycle research project informed the development of the Vanderbilt Patient-Reported Outcomes Measurement System (VPROMS). Through VPROMS, we collect 200 to 300 different PROMS across a wide range of departments at VUMC in approximately 30% to 40% of all outpatient encounters, and we have collected more than 3 million PROMs to date.

After the initial PCORnet project, we continued to collect the KCCQ-12 in routine clinical practice and now have PROMS data from more than 10,000 patients with heart failure. There are a lot of future studies that are going to come out specifically on the heart failure data, but the information about VPROMS in clinical care isn’t helpful just with heart failure, it’s helpful in a variety of outpatient and research settings. For example, VUMC researchers have published papers on using VPROMs to determine when patients get surgery for diverticulitis and to inform care in neuro-oncology.

How did your initial research lay the foundation for future studies utilizing the PCORnet® CDM and other initiatives to improve patient outcomes?

From the outset, one of our key questions was: “How are patients who complete the PROMs different from patients who do not?” In the initial project, we saw signals that patients who didn’t complete PROMs were generally older, they’re sicker, and more socially disadvantaged.

In our 2024 study, patients who didn’t complete the KCCQ-12 had approximately 70% higher odds of hospitalization within 90 days and 50% higher mortality within one year. These findings underscore the importance of focusing on non-completers, as they have much worse outcomes than patients who complete the questionnaire.

At a foundational level, our project reinforced the importance of data standardization – ensuring alignment on how data elements are defined, stored, and shared. That may sound basic, but it is essential for conducting multi-site pragmatic trials and other comparative clinical effectiveness research using PROMs data. A major benefit of the project was translating what we learned – particularly in collaboration with the Coordinating Center – into practical guidance that can help other institutions conduct multi-site studies using standardized PROMs data.

 

Ready to learn how you can access PCORnet multi-site research expertise and resources to support your patient-centered study? Contact the PCORnet® Front Door to start the conversation.

Medical Care Supplement Highlights the Capacity of PCORnet® to Power Patient-Centered Research

Posted on by Jodi Snare

A collection of articles authored by PCORnet® Network Partners and the Patient-Centered Outcomes Research Institute® (PCORI®) was recently published as a supplement in the February 2026 issue of Medical Care.

Titled, “PCORnet®: Accelerating Patient-Centered Comparative Clinical Effectiveness Research,” the supplement offers an in-depth look at how the PCORnet infrastructure supports patient-centered health research, drives innovation, and enables high-impact research at a national scale.

The supplement features 19 peer-reviewed, open-access articles that highlight the strong scientific value of PCORnet in advancing patient-centered health research. Together, the articles introduce the PCORnet infrastructure, trace the growth of the network over the past decade, showcase inspiring examples of research powered by PCORnet®, explore innovative approaches to engagement and partnership, and share insights from PCORnet® Network Partners on implementing new technologies.

One article in the supplement was collectively written by eight PCORnet® Patient Partners. The article describes a framework for meaningful patient engagement that is “careful, kind, and connected.” This framework builds on lessons learned from patient-partnered research in order to advance, “a collaborative and co-created health research ecosystem that improves outcomes for all.”

“This special issue marks a point of inflection for PCORnet, reflecting substantial progress, shared learning, and future directions for collaboration,” wrote Erin Holve and Kathleen McTigue in their introduction to the supplement. “As the network continues to evolve, the papers are a useful snapshot of the unique features of PCORnet and opportunities for research teams to use PCORnet for national-scale clinical effectiveness research and other health research.”

Articles Featured in the Medical Care Supplement

Overview of PCORnet® and Patient-Centered Clinical Effectiveness Research

Research Papers

Commentaries

Contact the PCORnet® Front Door to learn how PCORnet can support your patient-centered research.

New Research Highlight Shines Spotlight on PCORnet® Studies to Improve the Health and Healthcare of Children

Posted on by Jodi Snare

A new research highlight showcases how PCORnet® Studies are using the PCORnet infrastructure to conduct patient-centered pediatric research across therapeutic areas including nephrology, cardiology, and metabolic disorders. Pediatric patients across all 50 states from birth to age 20 represent more than 27% of the total population of patients served by PCORnet® Clinical Research Networks (CRNs), making research that promotes healthy children and youth a priority for the network.

Reflecting on his experience as the Principal Investigator for the Pediatric KIDney Stone (PKIDS) Care Improvement Network, Gregory Tasian said, “PKIDS at its core has turned around the way we conduct research in pediatric surgery. We turn to our patient and family partners to learn what are the questions we should be asking and what outcomes we should be measuring.”

The research highlight provides an overview of pediatric PCORnet® Studies that are generating real-world evidence to help patients and their caregivers make healthier choices and more informed healthcare decisions. The Pediatric PCORnet® Population Insights Report provides researchers with details about the capacity of the infrastructure of PCORnet to support national-scale pediatric research across a range of common and rare health conditions.

Researchers who partner with PCORnet have access to insights from high-quality health data from eight PCORnet® CRNs, engaged communities and Patient Partners, and research expertise. By leveraging PCORnet, researchers can access:

  • Data from everyday healthcare encounters with more than 47 million people annually across the U.S., including nearly 13 million pediatric patients ages birth through 20 years old
  • Proven, low-burden models for pragmatic research to minimize burden on participants
  • Patient engagement resources that drive meaningful research and results

Ready to begin your next patient-centered pediatric study? Knock on the PCORnet® Front Door to get started.

A New PCORnet® Population Insights Report Highlights the Capacity of the Network to Support Research on Obesity, Diabetes, and other Metabolic and Endocrine Conditions

Posted on by Jodi Snare

Each year, the PCORnet® infrastructure connects researchers with health data from more than 47 million people nationwide through eight PCORnet® Clinical Research Networks, enabling large-scale, innovative, patient-centered health research. The PCORnet infrastructure offers access to a broad range of patient populations and standardized data, streamlining the research process while maintaining rigorous privacy protections.

A new PCORnet® Population Insights Report on patients with metabolic and endocrine conditions receiving health care services at clinical sites participating in PCORnet is now available. This report offers insights into the capacity of the network to support meaningful research on conditions that affect weight, growth, cholesterol, blood sugar, and more.

The report offers a comprehensive overview of the demographics and geographic characteristics of more than 41 million adults and children who received healthcare services at clinical sites participating in PCORnet between January 1 and December 31, 2024. Patients were included in the report if they were routinely seeking care for given diagnoses. Researchers who are interested in characterizing conditions not specified in this report should contact the PCORnet® Front Door.

This Population Insights Report is a crucial resource for researchers, enabling them to assess how PCORnet resources can be used to conduct national-scale, patient-centered comparative clinical effectiveness research to improve metabolic and endocrine health. Ten tables in the report highlight different characteristics of patients receiving health care services across sites participating in PCORnet:

  • Demographics
  • Geographic and care settings
  • Medications
  • Metabolic and endocrine conditions, including
    • Obesity
    • Diabetes
    • Thyroid disorder
    • Parathyroid disorder
    • Osteoporosis
    • High blood pressure
    • High cholesterol
    • Polycystic Ovary Syndrome
    • Nonalcoholic liver disease
  • Co-occurring health conditions

This report highlights the potential for researchers to use the power of PCORnet to conduct patient-centered studies on a wide range of conditions that affect the quality of life of millions of people and to deliver fast, trustworthy answers that advance health outcomes.

Population Insights Reports are also available for other areas of research including women’s health, gene therapy, maternal morbidity and mortality, telehealth, intellectual and developmental disabilities, mental and behavioral health, and the pediatric population across PCORnet. Most offer the largest national query of real-world data on health conditions, populations, or service utilization.

Highlights and illustrations from the reports are available to view on the Population Insights webpage.

Interested in conducting national-scale research in one of the areas highlighted in the Population Insights Report? PCORnet may be used by all interested investigators, regardless of affiliation or source of funding. Contact the PCORnet® Front Door to get started.

Mark your Calendar! PCORI to Announce New Funding Opportunities for PCORnet® Studies

Posted on by Jodi Snare

On December 2, PCORI will release the Broad Pragmatic Studies (BPS) PCORI Funding Announcement (PFA) to support high-quality patient-centered comparative clinical effectiveness research (CER). Category 3 supports PCORnet® Studies that advance PCORI’s National Priorities for Health with direct costs of up to $12 million.

PCORnet® Studies are defined as those that:

  • Include two or more PCORnet® Clinical Research Networks and performance metrics
  • Exchange best practices with the network to promote continuous learning and improvement
  • Demonstrate a commitment to stakeholder engagement and partnership
  • Use PCORnet resources to improve the efficiency of patient-centered CER

PCORI has identified three specific areas of emphasis for this PFA: addressing obesity, treatments and strategies to address menopausal symptoms, and improving care delivery for individuals with intellectual and developmental disabilities (IDD).

Letters of Intent (LOI) are due January 6.

Are you ready to learn more and apply?  Take these three steps to prepare:

  1. Contact the PCORnet® Front Door as soon as possible. All applicants submitting to the BPS Category 3 PFA are required to contact the PCORnet® Front Door prior to submitting their LOI. The PCORnet® Front Door can advise on study feasibility and costs associated with working with PCORnet, provide data to inform study design, offer best practices for stakeholder engagement, and more.
  2. Register for the December 8 PCORI Applicant Town Hall to learn more about this PFA and how to submit a responsive LOI and application.
  3. Check out this webinar for an overview of PCORnet and the specific requirements for the Category 3: PCORnet® Studies option in the BPS PFA. 

On December 2, PCORI will also release a PFA on  Improving Health Decision Making with Comparative Clinical Effectiveness Research: Retrospective Observational Studies Leveraging Existing Data Sources.

This PFA seeks out well-designed, retrospective observational studies using established data sources and infrastructure, such as resources available through PCORnet. Studies should compare existing interventions that are either currently in widespread use or represent a current decisional dilemma that has a robust body of evidence. This could include clinical interventions (such as medications or diagnostic tests) or delivery system interventions (such as workforce and healthcare service delivery designs).

Long-term comparative effectiveness and safety assessments (i.e., more than five years of post-intervention follow-up) and research looking at populations that are not as easily randomized are encouraged. Applications must address one of the PCORI topic themes:

  • Improving Outcomes for People with Intellectual and Developmental Disabilities,
  • Preventing Maternal Morbidity and Mortality,
  • Improving Mental and Behavioral Health,
  • Improving Metabolic and Endocrine Health,
  • Managing Pain,
  • Addressing Rare Diseases,
  • Addressing Sensory Health,
  • Addressing Substance Use.

There is a PCORI Applicant Town Hall about this funding opportunity on December 10. Learn more.

A PFA supporting Partnering Research and Community Organizations for Comparative Clinical Effectiveness Research Across the Cancer Care Continuum is also set to open on December 2, with an Applicant Town Hall on December 9. Learn more. LOIs for both opportunities are due January 6.

If you are interested in using PCORnet to power your next research effort, now is the time. Be on the lookout for more information from PCORI on December 2.

Promising Research on Cancer Treatment Will Leverage the PCORnet® Infrastructure

Posted on by Jodi Snare

An observational study conducted by researchers at the University of Texas MD Anderson Cancer Center and the University of Florida (UF), the lead site of the OneFlorida+ PCORnet® Clinical Research Network, showed promising results for the potential of mRNA vaccines to improve health outcomes for people who have advanced lung or skin cancer.

The preliminary research, published in Nature, found that patients who received an mRNA COVID vaccine within 100 days of starting immunotherapy lived significantly longer than those who did not receive an mRNA vaccine.

These results suggest that mRNA COVID vaccines could be powerful tools in treating cancer by improving the body’s response to a type of immunotherapy called immune checkpoint inhibitors. While personalized mRNA cancer vaccines can help a patient’s immune system better recognize and target cancer cells, these vaccines can be expensive and hard to make.

Leveraging the PCORnet infrastructure

To confirm the study’s findings that the low-cost, widely accessible mRNA COVID vaccines can also be used to train the body’s immune system to kill cancer cells, researchers at UF will leverage the infrastructure and data resources available through PCORnet to plan and conduct a large, nationwide Phase II/Phase III clinical trial. The trial, called UNIFIER (UNiversal Immunization to Fortify Immunotherapy Efficacy and Response), will enroll patients who have lung cancer.

“The results of the clinical trial may inform the development of a universal mRNA vaccine to help spark the immune system’s response to a variety of different cancers. This research has the potential to improve health outcomes for millions of people,” said UNIFIER Co-Principal Investigator Elias Sayour, MD, PhD, University of Florida.

“We are excited to support this research to determine the effects of mRNA COVID vaccines on immunotherapy treatments in real-world settings,” said Betsy Shenkman, PhD, One Florida+ Principal Investigator.

Studies leveraging PCORnet resources have already answered critical patient-centered questions on heart disease, metabolic conditions, obesity, and more — demonstrating the power of PCORnet to improve patient care through efficient, high-quality research.

To conduct this important next phase of their research to advance cancer treatments, the clinical trial team at OneFlorida+ plans to collaborate with PCORnet® Clinical Research Network sites across the nation.

Are you ready to find out how PCORnet can support your next patient-centered study? Contact the PCORnet® Front Door to start the conversation.

New Resources Will Support Representativeness of PCORnet® Studies

Posted on by Jodi Snare

PCORnet® is a full-scale research infrastructure designed to make studies faster, easier, and more impactful.

And helping researchers design studies with confidence in their representativeness is a recent focus for PCORnet.

Because PCORnet is a national network connected to approximately 47 million patients who receive care each year, the network can be used to conduct a wide array of health studies, from pragmatic trials to retrospective observational research.

By comparison, the American Community Survey samples approximately 3.5 million households per year and while there is no national census for patients who receive healthcare in the U.S., the large size of PCORnet and the network’s demographic comparability to the U.S. suggest that a wide array of topics can be studied using the network. (See PCORnet Population Insights to review the collected data.)

Over the last year, the PCORnet Representativeness Project team has been working through the nuances of how to help clinical researchers optimize their use of PCORnet to enhance and evaluate the representativeness of a clinical study. The project will culminate in early 2026 with new resources for guiding researchers in their use of the PCORnet infrastructure.

“When we develop conclusions from research, we want these conclusions to apply to the people we will ultimately treat in the healthcare system,” said Carly Brantner, Assistant Professor of Biostatistics and Bioinformatics at the Duke School of Medicine and the Duke Clinical Research Institute (DCRI) and a member of the PCORnet Representativeness Project team.

“Part of the challenge of this project is conceptualizing who those people are and thinking through the best ways to compare a study sample with this target group of people to whom we want our findings to apply,” said Brantner.

Brantner recently joined the Casual Inference podcast to talk about how the PCORnet infrastructure can support investigators in thinking about ways to generate relevant samples using a national network.

“Because PCORnet is so large, descriptive data in prep-to-research data queries can help investigators identify patient populations to recruit from and benchmarks to which they can compare their study samples,” she said.

The Casual Inference podcast is hosted and sponsored by the American Journal of Epidemiology. It holds casual, accessible conversations with guests around topics in epidemiology, statistics, data science, causal inference, and public health.

Laine Thomas, Professor of Biostatistics and Bioinformatics at Duke and Deputy Director of Data Science and Biostatistics at the DCRI and the lead of the PCORnet Representativeness Project, acknowledged the inherent challenges in achieving representativeness.

“While the target population can be conceptualized based on eligibility criteria, having a dataset of all people that meet those criteria can be a tall order,” said Thomas. “What makes a dataset a gold standard is how closely the actual data set matches the ideal conceptual target population.”

New Tools

Helping investigators get as close a match as possible is the goal of the representativeness project, said Thomas. “Through this work we hope to show that PCORnet is not only a data network but a design tool to make research more representative from the start.”

The PCORnet Representativeness Project is developing resources to help researchers assess their PCORnet® Studies for representativeness.

The project is expected to conclude by March 2026, said Thomas, resulting in a tutorial on approaches for assessing representativeness of a study design relative to the network’s many resources. The team is also preparing manuscripts for peer review and has contributed content to the online PCORnet® Playbook.

Thomas herself will be able to use these new tools directly because she is part of the leadership team of a newly designated PCORnet® Study called Comparative Effectiveness of Emerging Medications in Children with Inflammatory Bowel Disease (COMPARE).

In her podcast discussion, Brantner looked ahead to these new tools.

“When a researcher does a study using PCORnet, we want to help make their studies representative,” said Brantner. “PCORnet can help guide that process.”

 

Interested in conducting national-scale research? PCORnet may be used by all interested investigators, regardless of affiliation or source of funding. Contact the PCORnet® Front Door to get started.