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National Studies Show How the PCORnet® Infrastructure Supports Meaningful Engagement

Posted on by Jodi Snare

Meaningful engagement is central to patient-centered health research but implementing it at a national scale can pose challenges—from recruiting participants and sustaining involvement, to ensuring patient perspectives shape research questions and outcomes. Research teams can use resources available through PCORnet®, a national patient-centered health research network, to enable large-scale research. A recent supplement in the journal Medical Care highlights how two PCORnet® Study teams leveraged the PCORnet infrastructure to improve recruitment and retention efforts, and to embed engagement throughout the research lifecycle.

 

The CHI-RON Study: Improving Representation Through Data-Driven Recruitment

Working with 12 sites across four PCORnet® Clinical Research Networks, the CHI-RON Study examined the effects of gaps in recommended care for individuals with adult congenital heart disease (ACHD).

CHI-RON, or Congenital Heart Initiative–Redefining Outcomes and Navigation to adult-centered care, is one of more than 60 PCORnet® Studies answering critical patient-centered questions on heart disease, metabolic conditions, obesity and more.

 

CHI-RON patient partners and researchers work alongside the community

 

Repurposed from article, available here online.

CHI-RON included two patients as co-investigators, a role that allows embedded patient input at every stage.  Additional patient partners also provided input on the study design, advised on challenges, designed recruitment videos, facilitated community connections, and created social media content.

When asked how they felt about their contributions to the research, the patient partners reported strong feelings of meaningfulness and contribution (measured using the validated Patient Engagement in Research Scale; PEIRS22).

“Building a truly patient-centered research team in which patient partners were included at every step enabled us to create a study that drew people in,” said Ruth Phillippi, MS, patient co-investigator and program lead at the Washington Adult Congenital Heart Program. “Not just to the registry but to a distinct and engaged research coalition that values our opinions and lived experiences.”

The CHI-RON study team also used the PCORnet® Common Data Model to help increase diversity in the trial.

Recruiting participants that reflect real-world populations has been a persistent challenge in ACHD research. Individuals who are younger, male or not actively engaged in clinical care have historically been underrepresented, limiting generalizability.

To address this, the CHI-RON study team developed a systematic recruitment approach. Patient, clinician, and researcher partners worked with the data science teams within PCORnet to design an algorithm to identify individuals traditionally not reflected in ACHD research and generated site-specific recruitment lists to support tailored outreach efforts. This tailored approach, embedded in the study design, successfully expanded demographic reach.

“I really do think it was the combination of the recruitment algorithm in addition to our engagement strategy that helped successfully increase the number of patients that we had previously underrepresented,” Anitha John, MD, PhD, CHI-RON investigator, reflected during a recent PCORnet® Best Practice Sharing Session.

“We were able to increase the numbers of younger, male patients, and also achieved better representation across race, ethnicity, and educational background.”

Read the full publication here.

 

PRECIDENTD: Sustaining Engagement in a National Pragmatic Trial

The PCORnet® Study PRECIDENTD (PRevention of CardIovascular and DiabEtic KidNey Disease in Type 2 Diabetes) is a national trial comparing two classes of diabetes medications, SGLT-2and GLP-1 (sodium-glucose cotransporter-2 inhibitors and glucagon-like peptide-1 receptor agonists).

Large pragmatic trials often struggle with retention and adherence, particularly when resources are limited and study teams are distributed across many sites.

“Drugs in these classes can be expensive and insurance coverage varies,” said PRECIDENTD investigator Lindsay Mayberry, MS, PhD. “That means that patients often needed additional support in order to actually adhere to trial requirements and complete study assessments. Patient input helped us understand the challenges patients face and how we might get ahead of them.”

PRECIDENTD engaged patients to co-design an automated text message-based tool designed to identify participants who need support to adhere to study medications, as well as to remind participants of study timelines and follow-ups, and express appreciation for their role in research. This included holding a community engagement studio to receive input on the study design and to shape the text messaging program’s goals and structure. Researchers then collaborated with a patient advisory council to codesign message content and tone and ensure the texting intervention reflected the real-world needs and experiences of people living with type 2 diabetes. In addition to helping to test the system, two patient partners served in decision-making roles on the executive committee alongside study investigators and helped to publish and disseminate results.

“Pragmatic trials place real demands on participants and study staff alike,” said patient partner Ed Simeone. “As a patient partner, being part of the co-design process from the start — including the development of the text messaging program — helped ensure that communication was clear, burden was manageable, and participants felt genuinely supported. That kind of collaborative approach builds trust and turns a research study into a shared endeavor.”

The program achieved an 80% response rate to text messages, with 25% of these interactions identifying barriers to taking the study medication that required coordinator support. By targeting outreach to those most in need, the approach helped study teams use limited resources more effectively while keeping participants engaged.

Through targeted outreach and other engagement strategies, PRECIDENTD reflects the comprehensive approach to engagement that all PCORnet® Studies should follow.

Read the full publication here.

These two PCORnet® Studies demonstrate some of the ways researchers can leverage the research-ready community and expertise within PCORnet to deepen engagement efforts.

 

Explore the Medical Care Supplement

The publications highlighted here are part of the recent Medical Care supplement, “PCORnet®: Accelerating Patient-Centered Comparative Clinical Effectiveness Research.” The supplement includes 19 peer-reviewed, open-access articles showcasing how investigators are using PCORnet to reshape patient-centered health research. Learn more and explore the full supplement here.

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

A New PCORnet® Population Insights Report Highlights Potential for Impactful Research on Sensory Health Conditions

Posted on by Jodi Snare

Sensory health plays a critical role in how people experience the world, including how they see, hear, move, and communicate. Research addressing evidence gaps in screening, treatment, and support services will help improve outcomes and ensure people at risk of sensory health conditions receive timely, high-quality care.

A new PCORnet® Population Insights Report is now publicly available, offering researchers  timely insights into patients with sensory health conditions who have received healthcare services at a site participating in PCORnet.

The report offers a comprehensive overview of the demographics and geographic characteristics of over 9 million adults and children who received healthcare services at 75 sites participating in PCORnet between January 1 – December 31, 2024, and had a sensory health condition reflected in their electronic health record in the past five years, from January 1, 2020 – December 24, 2024.

The report includes patients with sensory health conditions, such as vision disorders, hearing disorders, disorders that cause dizziness, smell and taste disorders, multiple sclerosis, spinal cord injuries, and autoimmune disorders. Four tables in the report highlight different characteristics of patients with sensory health conditions including

  • Demographics
  • Geographic characteristics
  • Characteristics of care setting and provider type
  • Co-occurring conditions, screenings, and hearing device assessments

The Population Insights Report is a valuable resource for researchers, enabling them to assess how the PCORnet infrastructure can be used to conduct national-scale, patient-centered research to improve sensory health. These reports offer the largest national query of real-world data on health conditions, populations, or service utilization.

Population Insights Reports are also available for other areas of health research including:

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

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

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.