2026 PCORI Annual Meeting Offers Opportunities to Learn About PCORnet®

Attending the 2026 PCORI Annual Meeting on October 19 and 20? There will be several opportunities to learn about PCORnet®, including a breakout session that will highlight how PCORnet® can advance patient-centered comparative clinical effectiveness research.

Demystifying PCORnet®: Ways PCORnet Can Advance Your Next Patient-Centered CER Study will take place on October 20 from 1:00-2:15 pm.

In the session, leaders, investigators, and patient partners from PCORnet will share information about how PCORnet combines high-quality health data from everyday healthcare encounters with patient partnership and research expertise to support efficient, large-scale research.

Hear from PCORnet® Study investigators about why they are using PCORnet resources to support their research. They will share real-world examples and ideas for how you can use PCORnet to power your next research study, and leaders from PCORnet will be on hand to answer your questions.

The session is open to anyone attending the PCORI Annual Meeting.

Explore the full PCORI Annual Meeting agenda.

Additionally, attendees can stop by the PCORnet booth to learn more about how PCORnet can support national-scale research and to speak with representatives from the network.

If you are not attending the Annual Meeting but would like to learn more about PCORnet, contact the PCORnet® Front Door to get started.

Healthcare Experiences of Patients with Menopausal Conditions are Examined in a New PCORnet® Population Insights Report

A new PCORnet® Population Insights Report offers a national-scale look at more than 2 million patients with menopausal conditions and their healthcare experiences. The report draws on de-identified data from patients who received healthcare services at sites participating in PCORnet in 2024 and who received a menopausal condition diagnosis between 2020-2024.

The menopausal transition can be associated with a variety of symptoms, including hot flashes, bone loss, joint pain, depression, anxiety, and insomnia. These symptoms may have an even more pronounced health impact among women who experience early or premature menopause.

Across the network, the data include more than 1.4 million patients with symptoms associated with menopause, and over 30,000 experiencing premature menopause. The scale of these data highlights the potential of the PCORnet infrastructure to support observational studies and pragmatic trials that can help answer important questions about menopause and healthcare.

The report provides insights into the incidence of diagnoses of menopausal-related conditions within this specific population. While the overall prevalence of these conditions is likely higher, these data reflect patients that received care for menopausal conditions during this 5-year period.

Menopausal Conditions Patients Percent
Asymptomatic Menopause 1,486,534 54.8%
Menopausal and Other Perimenopausal Disorders 1,467,175 54.1%
Excessive Premenopausal Bleeding 71,232 2.6%
Post-procedure Ovarian Failure 31,723 1.2%
Premature Menopause 30,557 1.1%

The report provides insights into the demographic and geographic characteristics of this patient population, as well as care settings, co-occurring chronic conditions, potential menopausal symptoms, prescribed medications and related procedures. Among patients with menopausal conditions:

  • The most common potential menopausal symptoms were fatigue (29.5%), headaches/migraines (23.4%), and palpitations (12.5%).
  • 4% received a bone mineral density test.
  • The most commonly prescribed medications included antihypertensives (33.6%), hormonal therapies (18.5%), selective serotonin reuptake inhibitors (12.3%) and GLP-1 receptor agonists (7.8%).
  • Medications for hot flashes were prescribed to 0.3% of patients.
  • 8% used telehealth.

With data from more than 28 million female patients across the network, the PCORnet infrastructure can support research addressing a wide range of women’s health questions. In addition to menopausal conditions, the network also includes information relevant to research on breast cancer, uterine cancer, endometriosis and other health conditions.

The report is part of a growing collection of PCORnet Population Insights Reports, some of which offer the largest national query of real-world data on specific health conditions, populations, or use of healthcare services. Together, these reports demonstrate how PCORnet-accessible data can support patient-centered health research planning and help advance evidence that is relevant and usable for patients, caregivers, and the broader healthcare community.

Reports on several healthcare topics, along with highlights and illustrations, are available on the Population Insights page.

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

 

PCORnet® Population Insights Report Shows Network Capacity for Patient-Centered Cancer Research

A new PCORnet® Population Insights Report offers a national-scale look at the characteristics of more than 4 million adults and children with cancer-related health conditions and their healthcare experiences. The report includes patients who received healthcare services at sites participating in PCORnet in 2025 who received a diagnosis of cancer between 2021-2025 according to their electronic health records.

With more than 4 million cancer patients represented across the network and 41.5% receiving healthcare services at community cancer care sites, the PCORnet infrastructure offers a strong foundation for generalizable observational studies and pragmatic trials.

Within this population of patients, the report provides insights into the prevalence of specific cancers.

Cancer Type Patients Percent
Skin cancer 817,552 20.4%
Breast cancer 723,400 18.1%
Prostate cancer 640,257 16.0%
Lung cancer 239,246 6.0%
Other lymphomas 225,545 5.6%
Colorectal cancer 223,757 5.6%
Leukemia 200,284 5.0%

The report captures the occurrence of several other types of cancers, along with the patient population’s demographic and geographic characteristics, care settings, co-occurring cancer conditions, cancer-related therapies and medications, and procedures including cancer screenings. Some key takeaways from the population of patients with cancer include:

  • 15.6% of patients had metastatic cancer.
  • More patients received targeted therapy (12.2%) than traditional chemotherapy (5.6%).
  • Immunotherapy (0.7%) and gene therapy (0.1%) were relatively rare and concentrated in specific cancers.
  • 26.3% of patients used telehealth.

Cancer affects millions of people across the United States each year, touching nearly every community and every stage of life. These timely real-world insights can help researchers identify opportunities for studies to improve prevention, diagnosis, treatment, survivorship, and end-of-life care, and answer questions most important to patients with cancer.

The report joins a growing collection of Population Insights Reports, some of which offer the largest national query of real-world data on specific health conditions, populations, or use of healthcare services. These reports illustrate how PCORnet-accessible data can support patient-centered health research planning and help advance evidence that is relevant and usable for patients, caregivers, and the broader healthcare community. Reports on several healthcare topics, along with highlights and illustrations, are available on the Population Insights page.

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

New PCORnet® Population Insights Report Highlights Characteristics of More Than 50 Million Patients

A new PCORnet® Population Insights Report provides a closer look at the characteristics of more than 50 million patients receiving healthcare services between January 1, 2025, and December 31, 2025, at organizations participating in PCORnet.

Drawing on data represented in electronic health records across all 50 U.S. states, the report provides insights into patient demographics, geography, and healthcare settings from sites participating in PCORnet.

The data are also stratified by each of the eight PCORnet® Clinical Research Networks (CRNs). This means researchers can design projects and include groups in their studies that are representative of different communities and varying levels of urbanization. The report can help researchers understand the breadth of PCORnet data resources available to answer research questions and recruit patients for future research.

A Closer Look At The Patient Population

PCORnet data resources offer access to a broad range of patient populations and standardized data, streamlining the research design and implementation process while maintaining rigorous privacy protections.

The patient population described in the report includes males and females across a variety of ages, races, and ethnicities. The demographic data include information about health insurance, showing:

  • 40% of patients have private insurance
  • 31% of patients have a form of public insurance, such as Medicare or Medicaid.

Additionally, 80% of patients reside in a metropolitan or urban area and 12% of patients reside in a rural area or small town.

While the report includes data on several healthcare visit types, approximately 87% of patients had at least one ambulatory visit in 2025 and 19% of patients had at least one emergency department visit during 2025.

Other Population Insights Reports include 11 topic-level reports that characterize the extensive, real-world patient data available through PCORnet data resources:

  • Cancer
  • Menopause
  • Sensory Health
  • Metabolic and Endocrine Conditions
  • Women’s Health
  • Gene Therapy
  • Pediatric Population
  • Intellectual and Developmental Disabilities
  • Maternal Morbidity and Mortality
  • Mental and Behavioral Health
  • Telehealth
  • Maternal Morbidity and Mortality

Highlights and illustrations from the new 2025 Population Insights Report are available to view on the Population Insights webpage. Additional insights on the PCORnet® Clinical Research Network Sites are available to help researchers understand site capacity and resources.

Contact the PCORnet® Front Door to get started with your patient-centered research. PCORnet may be used by all interested investigators, regardless of affiliation or source of funding.

PCORnet® Study Generates Practice-Changing Insights for Pediatric Kidney Stone Surgery

Findings from the Pediatric KIDney Stone (PKIDS) trial, a PCORnet® Study conducted by the PKIDS Care Improvement Network, are helping to shape how clinicians approach kidney stone surgery in children and adolescents, demonstrating the power of patient-centered research at scale. The prospective observational study compared three surgical treatments for the removal of kidney and ureteral stones – ureteroscopy, shock wave lithotripsy, and percutaneous nephrolithotomy – to determine differences in stone clearance and time to return to school or work.

The PKIDS study found that while ureteroscopy and shockwave lithotripsy did not differ in stone clearance, patients reported better experiences with shockwave lithotripsy than ureteroscopy one week after surgery. For patients with large kidney stones, percutaneous nephrolithotomy was more effective than ureteroscopy, and patients reported a better experience.

Engagement Expertise and Patient Partners Drive Meaningful Research

A hallmark of PKIDS, the largest observational study to date comparing ureteroscopy and shock wave lithotripsy in pediatric patients, was its deeply engaged, multidisciplinary network of partners. The PKIDS advisory council brought together physicians specializing in urology, nephrology, and radiology, alongside patients, caregivers, and representatives from health insurers and industry.

PKIDS Patient and Family Partners were integral members of the research team and informed the study design, recruitment strategies, and dissemination efforts. “We have the real-life experiences of living with kidney stones and can help provide crucial information that you would only know by living with the condition,” said Hunter Beck, a PKIDS Patient Partner.

Drawing on lived experiences, the PKIDS Patient and Family Partners selected patient-reported outcomes and collaborated with investigators to develop the Questionnaire for Urinary Issues—Kidney Stone Surgery (QUIKSS), a novel tool that captures patient-reported symptoms and recovery experiences not measured in existing validated instruments.

The study’s successful integration of Patient and Family Partners was facilitated by engagement experts from PEDSnet, a PCORnet® Clinical Research Network (CRN), and the Patient-Centered Outcomes Research Institute® (PCORI®), who funded the study.

“The engagement leads provided excellent insight into how we could deepen our engagement with patients, caregivers, and patient advocates,” said Gregory Tasian, MD, MSc, MSCE, PKIDS Principal Investigator. “That guidance helped us move beyond asking for feedback at isolated points and instead embed patient and family partners throughout the study. Our Patient and Family Partners helped us select outcomes that reflect what families experience after surgery, refine recruitment and retention strategies, and think carefully about how to return results in a way that is useful to patients and clinicians. The meaningful engagement of our Patient and Family Partners made PKIDS a stronger study because it ensured that the evidence we generated was clinically rigorous, patient-centered, and directly relevant to shared decision making.”

Research-Ready Community Surfaces Real-World Data Insights

The PKIDS study enrolled 1,290 participants ages 8 to 21 years across 20 sites in five PCORnet® Clinical Research Networks (CRNs) and 11 sites outside of the network, illustrating how the PCORnet infrastructure can efficiently support large, multi-site studies in pediatric populations. The PKIDS study team used the PCORnet® Common Data Model (CDM) to assess the generalizability of their findings, but the benefits of partnering with PCORnet expanded beyond standardized health data.

By comparing stone clearance and patient experiences across ureteroscopy, shock wave lithotripsy, and percutaneous nephrolithotomy, the PKIDS study strengthened the evidence base for shared patient-clinician decision making and contributed findings that support a 15 mm size threshold for pediatric patients with kidney stones. The prospective observational design of the study required the team to collect and analyze a large amount of clinical, patient, surgeon, and site-level data to account for important contextual factors that could make one treatment appear more or less effective than it really is. Gathering these detailed data required a strong data coordinating center and reliable research coordinators at each site, underscoring a comparative advantage of PCORnet – support from research experts across the healthcare community who help investigators interpret real-world data and translate their findings into practice-relevant evidence.

Patient-Centered Health Research Returns Actionable Results

The PKIDS study was designed in response to questions that directly impact patients and their caregivers: Which surgical approaches most effectively remove kidney stones? How do those procedures affect daily life? What does recovery look like?

By comparing stone clearance and patient experiences across ureteroscopy, shock wave lithotripsy, and percutaneous nephrolithotomy, the PKIDS study strengthened the evidence base for shared patient-clinician decision making and contributed findings that support a 15 mm size threshold for pediatric patients with kidney stones.

PKIDS results were presented at the American Urological Association (AUA) annual meeting as a “paradigm-shifting, practice-changing plenary session,” underscoring the study’s significance to the field. The study also contributed to the evidence base informing the AUA’s Surgical Management of Kidney and Ureteral Stones Guideline, where PKIDS findings were cited as supporting evidence.

The PKIDS study highlights how the PCORnet infrastructure enables researchers to generate timely, meaningful evidence that reflects patient experiences, clinical outcomes, and the local contexts in which care is delivered. By combining real-world data with engagement expertise and close connections to patients, caregivers, clinicians, and other community partners, research supported by PCORnet offers a distinctive model for advancing patient-centered health research in pediatric populations.

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

Save the date: PCORI to Announce New Funding Opportunities for PCORnet® Studies on August 4

On August 4, 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 five specific areas of emphasis for this PFA:

  1. Improving mental health and substance use outcomes for pregnant and postpartum populations
  2. Addressing the post-treatment, follow-up care needs of cancer survivors
  3. Diabetes prevention, care, and treatment;
  4. Management of neuropathic pain;
  5. Management of pain in individuals living with intellectual and developmental disabilities or Alzheimer’s disease and related dementias.

Letters of Intent (LOIs) are due September 9 by 5 pm (ET).  

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 team 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 August 13 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 August 4, 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 3 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
  • 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, view the PCORI Applicant Town Hall for the most recent prior award cycle, Cycle 2 2026.

Additional PFAs opening August 4 (with LOIs due September 9 by 5 pm [ET]) include:

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

PCORI Funding Announcement LOI Due Date Applicant Town Hall Date
Broad Pragmatic Studies September 9, 5 pm (ET) August 13, 11:30 am – 1 pm (ET)

Category 3 webinar

Improving Methods for Conducting Patient-Centered Comparative Clinical Effectiveness Research September 9, 5 pm (ET) View the recording
Addressing Health Outcomes for Individuals With Intellectual and Developmental Disabilities (IDD) and/or Rare Diseases (RD) September 9, 5 pm (ET) August 12, 12 – 1 pm (ET)
Addressing Substance Use September 9, 5 pm (ET) August 18, 12 – 1 pm (ET)
Advancing the Science of Engagement in Research September 9, 5 pm (ET) August 11, 12 – 1 pm (ET)

Research Powered by PCORnet® Illustrates How Partnerships Help Make Sense of Real-World Data

Research built on real-world data — information generated during routine healthcare, such as electronic health record (EHR) and claims data — can help answer questions that are often out of reach for traditional clinical trials. However, these data often require additional context to fully understand what they mean for healthcare decisions.

Two articles featured in the February 2026 Medical Care supplement, “PCORnet®: Accelerating Patient-Centered Comparative Clinical Effectiveness Research,” highlight how meaningful engagement of patients, payers and clinicians can help study teams contextualize real-world data, improving analyses and driving further research questions.

Lessons Learned From Using PCORnet® to Support the PATHWAYS Study

In the PATHWAYS study, investigators used EHR data from across four PCORnet® STAR Clinical Research Network (CRN) sites to examine cardiology referral patterns and cardiovascular care among people living with HIV in the southern United States.

The PCORnet® Common Data Model enabled the research team to conduct longitudinal, multisite analyses; however, interpreting real-world data requires more than infrastructure alone. Because referral data were not available in the standard data model, the team created a study-specific “sidecar” referral table to capture information central to the patient experience.

The study was also among the first studies powered by PCORnet® to incorporate HIV laboratory results into its analyses, and those data required additional processing and quality checks to address differences in how results were represented across sites. Together, those efforts underscored how investigators, informatics teams and site experts must work closely together to make real-world data usable for research.

Partnerships and meaningful engagement also played a key role in helping researchers interpret information. From the outset, people with HIV served as patient partners and coinvestigators, contributing to study design, analysis plans, implementation and dissemination. Their lived experience helped provide important context for understanding EHR data, including insights into the time and steps often involved between  a cardiology referral and a completed clinic visit.

The study also drew on multidisciplinary expertise, including HIV specialists, cardiologists, statisticians and site-based data teams, showing that understanding care pathways in real-world data depends on collaboration across clinical, analytic and patient perspectives.

“PATHWAYS illustrates that partnership is not peripheral to real-world data research,” said Gerald Bloomfield, MD, MPH, PATHWAYS investigator. “Patients are central to making the data meaningful.”

Read the full publication here.

 

PCORnet® Clinical Research Networks Partner With Health Plans

Another article in the Medical Care supplement highlights how partnerships with health plans and public payers can help researchers build a more comprehensive picture of care by linking EHR data with claims data.

Across PCORnet® CRNs such as REACHnet, PaTH and OneFlorida+, collaborations between researchers and payers make it possible to examine care across multiple settings and systems, capturing information that may not appear clearly from a single data source alone.

The article emphasizes that bringing together clinical and claims data can expand the types of outcomes researchers are able to study while helping address limitations inherent in either source alone. It also highlights how collaboration between researchers and payers can help drive research relevant to improving health systems.

For example, OneFlorida+ conducted a study of hepatitis C screening among Medicaid beneficiaries at high risk for infection. By linking Medicaid claims from 2012 to 2018 with EHR and laboratory data from the OneFlorida+ Data Trust, investigators were able to examine testing patterns in a statewide cohort and better understand follow-up screening patterns and gaps.

Rather than relying on a single type of record, the study drew on laboratory results, procedure codes, diagnoses, pharmacy claims and enrollment information such as months covered by Medicaid and dual eligibility status. The combined data gave researchers more clinical context, including how clinical factors, coverage patterns and social and demographic characteristics were associated with receiving recommended testing.

Similarly, as part of the PCORnet® Study Understanding How Antibiotic Use Affects Childhood Obesity and Growth, REACHnet partnered with Humana to conduct a substudy to examine how antibiotic use before age 2 was associated with weight outcomes later in childhood. By linking pharmacy claims with EHR data from a REACHnet partner health system, the team found that 60% of patients had consistent antibiotic medication data across the two sources, while about a quarter of dispensing claims reflected prescriptions written outside the partner health system. This substudy demonstrated the value of partnering with a health plan to help fill important gaps in EHR medication data and strengthen analyses that depend on a more complete picture of care.

“Working together, clinicians, patients and payers help identify important outcomes that may require combined data sources to best measure,” said Elizabeth Nauman, PhD, MPH, an author on the publication and dual principal investigator for REACHnet. “Some outcomes are captured in claims data, like medication dispensing, healthcare utilization and cost, and other outcomes, such as weight, are collected in clinical data.”

More broadly, the authors write, payer engagement helps address a longstanding gap in comparative clinical effectiveness research where payers are recognized as key stakeholders but are often absent from the research process. By involving payers not only in data sharing, but also in research prioritization and learning health system activities, PCORnet® CRNs can help generate research questions aimed at improving care delivery.

“Beyond data sharing, PCORnet® Network Partners collaborate with members of the payer community to prioritize research topics, identify study outcomes that matter to patients and are of value to payers, conceptualize learning health system transformation and participate in learning communities,” said Kathleen McTigue, MD, MS, MPH, publication author and co-principal investigator of the PaTH Network. “These collaborations hold promise for developing and carrying out high-value research that can improve clinical care, health plan policy and even the design of benefits.” Read the full publication here.

Together, the two articles illustrate how multidisciplinary partnerships can help make real-world data more meaningful and more useful. Patients help researchers understand what the data miss or misrepresent; clinicians and data teams help connect documentation patterns to clinical care processes; and payer partnerships make it possible to link complementary data sources and study outcomes that matter to patients, providers and health systems alike.

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.

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

PCORnet® Resources Are Advancing Rare Disease Research

By leveraging the real-world data resources, patient-informed insights, and the national-scale infrastructure of PCORnet®, investigators are overcoming longstanding challenges in rare disease research. Historically, research in rare health conditions has been limited by small, geographically dispersed patient populations and gaps in natural history data.

A new Research Highlight demonstrates how the PCORnet infrastructure mitigates these barriers to rare disease research through standardized longitudinal clinical data generally not available through existing national surveillance systems.

The engaged, research-ready community of PCORnet – including patients, caregivers, clinicians, health system leaders, and others – sets it apart from other research networks. By integrating the lived experience and expertise of community partners throughout the research lifecycle, PCORnet® Studies ensure that outcomes are meaningful and actionable for patients, families, and clinicians.

Real-World Impact Across Rare Disease PCORnet® Studies

The Rare Disease Research Highlight features multiple case studies that demonstrate how PCORnet enables investigators to conduct impactful, patient-centered research across a range of rare conditions. Using PCORnet, researchers:

  • Are conducting a multicenter study in Lennox-Gastaut Syndrome, the first to directly compare epilepsy surgery to additional anti-seizure medications, to identify the most effective options for improving outcomes in children with severe epilepsy.
  • Conducted the largest behavioral intervention trial in sickle cell disease to date to evaluate the effectiveness of mobile-delivered cognitive behavioral therapy to help patients better manage pain and improve their quality of life.
  • Developed an algorithm using the PCORnet® Common Data Model, informed by patient and clinician insights, to improve recruitment in research to examine care transitions in congenital heart disease and identify factors associated with gaps in recommended treatment across rare disease subtypes.
  • Expanded the PCORnet® Common Data Model for pediatric and rare disease research through a pediatric kidney disease study that used real-world data and patient engagement to better understand disease management and preserve kidney function in children.

Together, these studies highlight how the PCORnet infrastructure supports both observational and interventional research to generate evidence that can improve care for patients living with rare diseases.

Enabling Better Research and Better Outcomes

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

  • Data from everyday healthcare encounters with more than 50 million people annually across the U.S. to better understand disease progression
  • Proven, low-burden models for pragmatic research to minimize burden on participants
  • Patient engagement resources that drive meaningful research and results

PCORnet resources are available to researchers across academic, industry, and patient advocacy organizations, helping accelerate the generation of real-world evidence to improve health outcomes in rare diseases.

Other research highlights include PCORnet® Studies in pediatric populations and cardiovascular, metabolic, and nephrology conditions.

Knock on the PCORnet® Front Door to begin your next patient-centered study.

National Studies Show How the PCORnet® Infrastructure Supports Meaningful Engagement

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

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.