News and Events

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.

A Clinical Trial Readiness Study of Clinical Outcome Assessments in TTP (THINK-TTP)

Posted on by Jodi Snare

March 25, 2026
12 pm – 1 pm (ET) 

Please join the Coordinating Center for PCORnet® for a Best Practices Sharing Session on Wednesday, March 25th, 12-1 PM ET. The guest speakers for this webinar are Theresa Coles, PhD and Toyosi Onwuemene, MD, MS from Duke University School of Medicine.

This webinar will feature the PCORnet® Study entitled “A Clinical Trial Readiness Study of Clinical Outcome Assessments in TTP (THINK-TTP).” The speakers will describe how the study will identify reliable, valid, and responsive cognitive function assessments for use in TTP trials, and how the study’s approach to identifying measures—and sharing results publicly—will drive trial readiness and support patient-centered treatment development.

Please contact the [email protected] for a calendar invite.

 

Patient-Reported Outcomes (PROs) Tools and Resources in Clinical Care, Research, and Real-World Evidence

Posted on by Jodi Snare

February 18, 2026
1 pm – 2 pm (ET) 

Please join the Coordinating Center for PCORnet® for a Best Practices Sharing Session on Wednesday, February 18th from 1:00-2:00 PM ET. The guest speakers for this webinar are:

Claire Snyder, PhD
Norah Crossnohere, PhD
Anne Schuster, PhD
Keith Marsolo, PhD

Dr. Snyder is from Johns Hopkins School of Medicine, and Drs. Crossnohere and Schuster are from The Ohio State University College of Medicine; they lead the PROTEUS Consortium. They will share tools and resources from the PROTEUS Consortium for capturing and communicating patient-reported outcomes (PROs) in clinical care and for research, as well as opportunities to use PROs for real-world evidence.

Dr. Marsolo, from the Duke Clinical Research Institute, will describe efforts to work with sites participating within PCORnet to load PROs into their local PCORnet® Common Data Models. The session will conclude with an interactive discussion regarding approaches to further strengthen the integration of PROs in PCORnet.

Please contact the [email protected] for a calendar invite.

 

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.

Urinary Stone Disease Hub (USDHub): Community Research for Nephrolithiasis Research

Posted on by Jodi Snare

January 15, 2026
2 pm – 3 pm (ET)  

Please join the Coordinating Center for PCORnet® for a Best Practices Sharing Session on Thursday, January 15th, 2-3 PM ET. The guest speaker for this webinar is Ryan Hsi, MD, Associate Professor of Urology from University of California, Irvine.

In this webinar, Dr. Hsi will provide an overview of the NIH-funded PCORnet® Study entitled “Urinary Stone Disease Hub (USDHub): Community Research for Nephrolithiasis Research,” including lessons learned for integrating expertise across sites and disciplines within and outside of PCORnet teams to produce an impactful and novel resource.

Please contact the [email protected] for a calendar invite.

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.

Assessing and Improving Research Readiness

Posted on by Jodi Snare

November 20, 2025
2 pm – 3 pm (ET)  

This event has ended.

Join us for a Best Practice Sharing Session, Assessing and Improving Research Readiness, to learn about the evolution of the foundational data quality process developed and used by the Coordinating Center for PCORnet® and PCORnet® Clinical Research Networks, and share best practices for using transparent, collaborative approaches to improve research readiness.

Speakers include:

  • Laura Qualls, MS
  • Darcy Louzao, PhD
  • Keith Marsolo, PhD

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.