News and Events

(Almost) 10 Years of PCORnet®: Reflecting on the Network’s Growth and Looking Ahead

Posted on by Jodi Snare

PCORnet® stakeholders and leadership team members recently gave a National Institutes of Health (NIH) Collaboratory Grand Rounds webinar presentation on the near decade of research powered by PCORnet, including key accomplishments and the evolution of the Network. The presentation featured thoughtful commentary on Network successes from Erin Holve, chief Research Infrastructure officer at PCORI; Russell Rothman, PCORnet® Executive Committee chair and STAR Clinical Research Network (CRN) principal investigator; Schuyler Jones, associate professor of Medicine and Population Health Sciences at Duke University and STAR CRN co-principal investigator; and Neha Pagidipati, associate professor of Medicine at Duke University.

Bringing to life PCORI’s priorities

PCORI supports research that generates the information people need to achieve better health outcomes, and it began funding the development of PCORnet in 2014 as an important national resource to achieve this goal. Today, PCORnet is comprised of eight CRNs, with hundreds of sites across the country providing inpatient and outpatient healthcare to over 30 million people each year. Data collected on these encounters are complemented by PCORnet-enabled access to patients, clinicians, researchers, and other stakeholders—a collaboration that enables meaningful research targets and faster answers.

“PCORI is the nation’s leading funder of patient-centered comparative clinical effectiveness research (CER), and the PCORnet infrastructure is a major force for bringing this and many other kinds of research to life,” said Rothman. “The Network serves as an important vehicle for transforming research in a way that achieves PCORI’s vision: outcomes that are more meaningful, more patient-centered, and deeply embedded in the real world.”

Milestones on the journey to date

The Network began with the idea that uniting data, patient insights, and research expertise could improve clinical research, but building such a large-scale national resource is easier said than done. Network leaders reflected on several key milestones on the PCORnet journey:

  • Uniting the CRNs. PCORnet now comprises eight large CRNs that represent over 60 health systems across the country. Each of these sites maintains governance over its data, but they come together on a near-daily basis to collaborate on impactful research that makes a difference.
  • Building the PCORnet® Common Data Model (CDM) and data network. PCORnet leadership needed a strategy to unite disparate data from the CRNs for research, and they ultimately solved this challenge with the PCORnet® The CDM standardizes electronic health record data into a common language so that a query can go to all sites participating in PCORnet from across the country and achieve rapid results. PCORnet leadership also built a data network to safeguard sensitive data through robust regulatory oversight, informatics approaches that limit data access, and rigorous quality checks so researchers and patients alike can feel confident in PCORnet-leveraged results. Now, PCORnet resources can be used to link to other data sources, like claims, geocoding and registries to more deeply understand the patient experience while maintaining patient privacy.
  • Putting the Network to work. Perhaps the biggest feather in the cap of PCORnet leadership is the meaningful research its infrastructure has successfully supported. The ADAPTABLE trial successfully recruited 15,000 participants—the largest study to date looking at appropriate aspirin dosing—through a novel, pragmatic design that deeply embedded patients in every step, from inception through dissemination of results. The PREVENTABLE study has already enrolled 5,000 patients aged 75 or older—a challenging demographic to recruit—to understand the impact of statins on heart disease, disability, and dementia. These and many other studies prove that the Network can transform how research is conducted and deliver results that matter to communities.
  • Engaging patients, caregivers, and other stakeholders. The Network’s developers believe that patients’ lived experiences are critical to good research and designed the PCORnet infrastructure in a way that embeds those perspectives throughout the study journey. Today, patients and other stakeholders sit on the PCORnet® Steering Committee, participate in the infrastructure and governance of all eight CRNs, and participate in PCORnet designated studies. Stakeholders participate in all aspects of the research process from identifying research priorities to study implementation, evaluation, and dissemination of results. Taking research out of the ivory towers and into the real world where results are most applicable is a sea change that PCORnet leaders are happy to lead.

Looking ahead

PCORnet leaders see tremendous opportunities for the Network to grow and support even more patient-centered research. There is momentum around expanding the depth of PCORnet-accessible data to bring in more patient-reported measures that can complement electronic health record data and generate more meaningful results. Recent efforts to embrace technology, like privacy-preserving record linkage, reflect the leaders’ continued commitment to build out an infrastructure that extracts the richest data possible while maintaining strict privacy protections for patients.

“The future for PCORnet is very bright, and there is a shared commitment across our CRNs to build on our success and maintain the positive momentum we have achieved,” said Rothman. “The possibilities for the next ten years with PCORnet are huge, and I think we are all excited to be a part of this journey to come.”

The NIH Collaboratory Grand Rounds webinar recording is available now to view and listen. Additionally, a podcast on this topic is now also available and answers questions from webinar listeners about the presentation.

Workshop Registration Now Open: A Quick-Start Guide to Using PCORnet®

Posted on by Jodi Snare

PCORnet® infrastructure offers high-quality health data, patient partnerships, and research expertise that may be able to optimize your study. Are you interested in leveraging these benefits, but not sure where to begin? On June 27, PCORI and PCORnet Network Partners will host a workshop giving practical advice for using resources available through the PCORnet® Front Door, identifying potential collaborators across the Network, and broadening your understanding of PCORI’s funding opportunities for research that uses PCORnet resources. This free, hands-on workshop is an adjunct event following the conclusion of AcademyHealth’s 2023 Annual Research Meeting in Seattle, Washington.

Don’t miss this unique opportunity to learn how you can kick-start your next study using PCORnet resources. Learn more, and register today!

Five ways patients win with PPRL in PCORnet®

Posted on by Jodi Snare

Electronic health records (EHRs), administrative claims databases, and other patient data are important sources of healthcare information that can be used for research. However, they live in separate systems, which means researchers typically can’t easily combine insights to understand a complete picture of the patient experience. These sources also contain sensitive information that must be protected. To address this challenge, PCORnet leaders have embraced a technique called privacy-preserving record linkage (PPRL) to link records from different databases while protecting the privacy of patients.

But why should patients care about PPRL? Here are five key ways the implementation of PPRL in PCORnet will bring meaningful benefits to patients:

  1. Maintaining the highest protection of patient privacy: PPRL uses unique codes, such as numbers, to represent sensitive data. This ensures that patients can rest easy knowing that linking these data sources will not compromise to their confidential data, given that data is anonymized and de-identified before it is ever used in research.
  2. Improved data accuracy: PPRL helps to improve the accuracy of patient data by matching records across different databases, eliminating duplicates and ensuring that the most up-to-date information is used in research. For patients, that means that results from research powered by PCORnet will be even more reliable than they are to date.
  3. Findings that more fully reflect the population: PPRL enables PCORnet researchers to access a larger set of patient data, leading to more comprehensive and robust research findings.
  4. Better decision making: PPRL helps to improve decision making by providing a more complete picture of patients’ health experiences, as data from multiple sources can be linked and analyzed. As a result, gaps in our understanding are reduced, leading to more comprehensive assessments and informed care choices.
  5. A gateway to precision healthcare: PPRL helps researchers tap into much broader data so we can understand the nuance across different populations and settings. When that nuanced data is combined with sophisticated analytic models, it can help us deliver healthcare in a very precise and personalized way. That means clinicians can potentially diagnose patients earlier, tailor therapies to the individual and better manage chronic conditions.

“As patients, we know our lived experience is so much richer than what is depicted in a single electronic health record,” said Greg Merritt, patient partner for PCORnet. “I am really excited about the promise of PPRL to unlock some of that rich detail so that clinicians can partner with patients like me, do research that will protect my privacy, ask meaningful research questions, and ultimately, find the course of treatment that is actually for me—not just my EHR.”

Want to learn more about PPRL in PCORnet? Check out this recent article.

Rigorous patient privacy + connected insights: With PPRL, PCORnet® researchers can have the best of both

Posted on by Jodi Snare

Two recent manuscripts published in the journal BMC Research Notes and JAMIA describe the framework and implementation of a new method of connecting patient data across disparate healthcare ecosystems in PCORnet while maintaining the highest levels of privacy and security. Privacy-preserving record linkage, or PPRL, connects electronic health records (EHRs) and administrative claims databases, unlocking the ability to fill important gaps in data, while still making sure the private information of the individual stays protected.

“There’s a growing appreciation for the fact that traditional health systems are not the only places where important information about our overall health resides,” said Tom Carton, who co-led the PPRL Implementation Workgroup for PCORnet. “PPRL is a method that allows us to fill these gaps in data while maintaining the highest privacy standards so we can better understand what is driving good or bad health outcomes.”

How PPRL works

PPRL has been used as an encryption technique since the 1990s in the computer science community, but only recently has it made the jump to healthcare. The method involves a technique called hashing to create an irreversible and unique code (such as a number) given a set of inputs, like patient demographics or first and last names. These codes allow researchers to link patient records across data sources in a way that is compliant with HIPAA, the Health Insurance Portability and Accountability Act. As a result, users of PCORnet can now assign a universal patient identifier code across multiple datasets from PCORnet Partner Networks without compromising any personal information.

“PPRL is going to bring tremendous value by solving two key problems that currently plague large-scale research,” said Keith Marsolo, co-lead of the PPRL Implementation Workgroup for PCORnet. “First, it will allow users to flag and de-duplicate records across multiple datasets, meaning that people who get care from multiple health systems in the same geography will be more accurately counted. And second, it will allow us to much more easily link EHRs and claims data sets across PCORnet, providing a more complete picture of patients’ health experiences.”

The current state of PPRL in PCORnet

The PCORnet PPRL Implementation Workgroup successfully demonstrated the ability to use PPRL to identify overlap across approximately 170 million patient records accessible via PCORnet; they also created a de-duplicated summary of demographic and clinical characteristics for patients from 61 Partner Networks. This project, which was one of the largest linkage efforts of its kind in the U.S., enables current and future studies—including several PCORnet rare disease studies—to benefit from connected insights across EHR claims, and patient reported data.

“This is an exciting advance for researchers and patients alike,” said Marsolo. “With PPRL in place, meaningful research can proceed uninhibited by gaps in understanding with zero sacrifice to patient privacy and security. It’s a win-win.”

Two RECOVER Studies Leverage PCORnet® for New Insights on ‘Long COVID’

Posted on by Jodi Snare

As COVID-19 viral variants continue to spread, so too grows the population of those who experience COVID-19’s effects months after the acute illness has passed. Now two new manuscripts in Nature Medicine and JAMA Pediatrics show how the RECOVER initiative is using PCORnet®, the National Patient-Centered Clinical Research Network, to shed new light on who is impacted and how.

PCORnet: A key tool for RECOVER research

RECOVER research is funded by the National Institutes of Health and aims to understand why some people do not fully recover and develop long COVID. RECOVER brings together patients, caregivers, clinicians, community leaders, and scientists from across the nation and comprises multiple studies at institutions aligned toward this common goal.

PCORnet is a critical resource for RECOVER research because of the Network’s broad and deep data reach representing the everyday encounters of tens of millions of Americans. While most research to date has studied the signs and symptoms of long COVID independently, PCORnet enables a more holistic analysis that can shed light on trends around the condition’s complex presentations.

New characterizations of long COVID

A major challenge of long COVID is that it has been difficult to pin down how and why it presents across different patients. Now, a RECOVER study has used PCORnet to determine that adults with long COVID generally fall into four adult sub-groups (technically known as subphenotypes) based on the conditions they are diagnosed with following COVID. The results were published in Nature Medicine.

The team explored the electronic health records, or EHRs, of more than 34,000 COVID-positive patients across two PCORnet Clinical Research Networks: INSIGHT and OneFlordia+. By pairing PCORnet-leveraged data with machine learning analysis, the team assessed more than 130 symptoms and conditions before arriving at the following four subgroups that are reproducible, meaning another large-scale study would produce similar results:

  • Patients with new conditions of cardiac and renal symptoms (75% of patients in INSIGHT and 25.43% of patients in OneFlorida+)
  • Patients with new respiratory system, sleep and anxiety problems (75% in INSIGHT and 38.48% of patients in OneFlorida+)
  • Patients with new musculoskeletal and nervous system problems (37% in INSIGHT and 23.35% of patients in OneFlorida+)
  • Patients with new digestive and respiratory symptoms (10.14% in INSIGHT and 12.74% of patients in OneFlorida+)

These findings mark an important disease characterization milestone that could help clinicians and health systems develop more meaningful care models to meet the needs of patients with long COVID.

Long COVID in children

Another study surfaced several key insights about long COVID in children, which were recently published in JAMA Pediatrics. The retrospective cohort study used de-identified EHRs from more than 650,000 children across PEDSNet, a PCORnet Partner Network. All the children were under 21 years old, had previously been tested for COVID-19, and had visited a care provider within PEDSNet at least once in the three years before testing. The study found:

  • The burden of pediatric long COVID that presented to health systems was low, meaning long COVID in children is fairly uncommon.
  • Myocarditis was the most commonly diagnosed long COVID-associated condition in children, which differs from adults.
  • Acute illness severity, young age, and comorbid complex chronic disease increased the risk of long COVID.

These findings suggest that while long COVID impacts both children and adults, it does not impact them in the same way. Future studies, including long-term prospective studies, are needed to more fully characterize trends around how long COVID plays out in different populations.

Use of Smartphone Technology Won’t Yield Lower Blood Pressure Readings, Says New PCORnet® Research

Posted on by Jodi Snare

Mobile technology is fueling new frontiers in healthcare, promising easier management of chronic conditions through applications that send reminders, record readings, track trend lines, and allow users to share results with their clinician at the push of a button. In theory, such apps will drive better engagement and accountability, improving health outcomes. But do the apps live up to the hype? New research results from a PCORnet-powered study, published in JAMA Internal Medicine, say the answer is ‘not always’ when it comes to smart blood pressure apps.

The study team used PCORnet to conduct a large pragmatic clinical trial comparing the effectiveness of managing uncontrolled blood pressure across two randomized groups: one performing self-measurement with a standard home monitor (the usual wrap cuff with output on the device), and the other using a similar device enhanced with a connected smartphone application. The app reminded participants to check blood pressure and featured measurement tracking, interpretation, annotation and visualization tools. It also supported users in emailing a summary of their measurements to a clinician.

Newly released results from the study suggest that there is no significant advantage to using the enhanced blood pressure monitoring device with a connected smartphone app versus a standard device. The group using the connected app did not experience any additional reduction in blood pressure, and no more of the patients who used the enhanced device would recommend it to their peers than those who used a standard device.

PCORnet as a facilitator for patient-centered insights

The results of this study are important because self-management of hypertension is becoming more commonplace due to the rise of telehealth care in recent years. Given that uncontrolled blood pressure contributes to 500,000 deaths per year in the U.S., a clear understanding of the most effective tools to support patients in effectively managing the condition is critical.

PCORnet was uniquely positioned to support the study because of its broad reach into a large percentage of the U.S. population. The Network’s established connections across major health systems and shared use of a Common Data Model to standardize disparate electronic health record (EHR) data codes allowed researchers to rapidly glean insights representative of a broad swath of America while minimizing the burden to study participants.

The study team used PCORnet to extract baseline data from EHRs of the 2,100 study participants. Then they compared those numbers to in-clinic blood pressure measurements from EHRs after six months using either the standard device or the enhanced device. The study team also conducted a short patient satisfaction survey.

Both groups had an apparent reduction of approximately 11 mm Hg from their baseline reading to their most recent office BP measurement. Satisfaction rates of participants assigned to the standard monitor or the enhanced monitor with app were statistically insignificant.

While these outcomes are consistent with prior literature, the study team supports future research to evaluate novel technologies that may better support blood pressure control.

Which of the Two Newer Classes of Diabetes Drugs is Better? Patients and PCORnet® Will Guide Answers

Posted on by Jodi Snare

Two newer classes of type 2 diabetes medications have the potential to transform the way people manage the condition that currently impacts more than 32 million Americans. Recent studies have shown that sodium-glucose cotransporter-2 inhibitors (SGLT2i) and glucagon-like peptide-1 receptor agonists (GLP-1 RA) not only control blood sugar, but may also reduce risk of heart attack, stroke, hospitalization for heart failure, and death due to cardiovascular causes in those with established cardiovascular disease and those at high risk. These events are the most common cause of disability and death in patients with type 2 diabetes. The development of SGLT2i  and GLP-1 RA medications represent a tremendous breakthrough. But questions remain. Which is better? And, perhaps even more intriguing, might these medicines work even better in combination?

PRECIDENTD (PREvention of CardIovascular and DiabEtic kidNey disease in Type 2 Diabetes) is a study combining the power of PCORnet, the National Patient-Centered Clinical Research Network, and patient insights to find out. The study, which is funded by the Patient-Centered Outcomes Research Institute, plans to recruit 9,000 adults with type 2 diabetes and with or at high risk for heart disease via eight PCORnet sites to be randomly assigned treatment with an SGLT2i, a GLP-1 RA, or both. These patients will be followed by the study team for an average of nearly four years to determine which medication approach is most effective at reducing major health events, such as heart attack, stroke, kidney problems, and death.

“Of the 32 million Americans living with type 2 diabetes, more than 20 million also have, or are at high risk for, heart disease,” said Brendan Everett, principal investigator for PRECIDENTD. “Two newer classes of drugs that effectively treat both conditions concurrently represent a huge advance in diabetes care that’s no less significant than the introduction of statins for heart health in 1991. But no study has compared the classes head-to-head to guide patients on which one is better, and in what circumstances. Those are the questions PRECIDENTD hopes to answer.”

Breaking the ‘curse of knowledge’ is key, says patient partner

The research team knows it can’t deliver answers on its own. Encouraging patients to participate in a randomized trial is always a challenge. To understand and overcome potential obstacles to participation, PRECIDENTD established a patient-centered advisory board comprised of people with diabetes to share their experience and serve as influencers for patients participating in the study.

One of those patient influencers, Ed Simeone, says reaching diabetes patients effectively comes down to breaking the “curse of knowledge,” or the assumption that everyone in the room shares your knowledge and perspective.

“When study materials are packed with technical jargon, they aren’t educational or motivating to the layperson,” said Ed. “We need to transcend that jargon and help patients understand that what sits before them is an opportunity to have a remarkable impact on diabetes care. No diabetes patient should suffer a stroke simply because the potential benefits of the new treatments available weren’t clear.”

Ed sits in regular Zoom calls along with five other patients, the study principal investigator, and medical professionals spanning endocrinology, cardiology and more, to explain what goals and health outcomes are important to the diabetes community. Together, the advisory board develops tactics to ensure the study team works with all stakeholders and enrolls participants from racial and ethnic groups with high diabetes prevalence, many of which have also historically been excluded from diabetes research. Patient partners were pivotal in designing PRECIDENTD’s endpoints and engagement materials; when the study concludes, they will play an important role in sharing results, too, ensuring that the findings are integrated into usual care and make sense to frontline providers and their patients.

“Other studies I’ve participated in took blood and moved on,” said Ed. “As an advisory board member, I see my advice come to life. They are thirsty for our perspective and bring a humility that, frankly, could serve all future research.”

The PRECIDENTD study is currently setting up contracts with enrolling sites through PCORnet. Results are expected in 2028, which will help patients, their families, and their healthcare providers decide which type of diabetes medication is best for their specific combination of medical conditions, preferences, and goals.

PCORnet® Is Helping Researchers Unravel the Mystery of Long-Haul COVID

Posted on by Jodi Snare

Today, almost 60 percent of the U.S. has been infected with COVID-19, a figure the CDC says is likely a conservative estimate. While most people infected recover fully in a matter of weeks, millions of people continue to suffer the effects of COVID-19 months—or even years—after initial infection. When COVID-19 effects are felt for this long after initially testing positive, it is described as post-acute sequelae of SARS-Cov-2 (PASC) infection, or “long COVID”. Many facets of long COVID remain a mystery. Who is likely to suffer long COVID? What’s the best way to treat it? What, if any, lasting health effects might long COVID produce? To answer these questions, researchers within PCORnet®, The National Patient-Centered Clinical Research Network, have been funded through the National Institutes of Health RECOVER initiative to leverage PCORnet data resources to understand long COVID in adults and children.

“Studying long COVID is exactly the type of research that the PCORnet infrastructure was designed to support,” said Charles Bailey, co-leader of EHR cohort studies for RECOVER. “We don’t have a reliable definition of the condition yet, so we don’t know what we are looking for. However, using PCORnet resources, we aim to sharpen the clouded picture of long COVID and bring much-needed insights to patients and providers.”

RECOVER’s EHR cohort will be a collaboration across all eight Clinical Research Networks participating in PCORnet, representing 41 institutions across the United States. PCORnet Network Partners provide an unprecedented breadth and depth of real-world data, nationally renowned investigators including informaticians, clinicians, and learning health system experts, and a robust track record for large-scale observational research, comparative effectiveness studies, surveys, and pragmatic clinical trials. RECOVER will use these resources to rapidly generate evidence around long COVID in both adults and children.

Delivering long-awaited answers to long-haul COVID

The EHR cohorts will contribute to the RECOVER Initiative in several meaningful ways, including the creation of new phenotypes, or sets of identifiable characteristics, for long COVID.

One of the most exciting features of RECOVER is that it will use its EHR cohorts to develop models and algorithms that can effectively predict who is at risk of long-haul COVID, answering a question that has puzzled researchers since the pandemic began. These models will also help RECOVER researchers examine disparities between different populations and will further help to illustrate the effects of vaccines on long COVID.

“National-scale research networks like PCORnet have been absolutely essential in helping us get answers through the pandemic, and I’m excited to see the insights RECOVER will contribute to that body of knowledge,” said Bailey. “To patients living with debilitating COVID-19 symptoms for months or years need hope: We see you, and RECOVER is going to relentlessly pursue the answers you’ve long been awaiting.”

PCORnet® Resources Are Being Used to Reduce Gaps in Congenital Heart Disease Care

Posted on by Jodi Snare

PCORnet®, the National Patient-Centered Clinical Research Network, is helping a research team to better understand how gaps in care impact the experience of adults with congenital heart disease, or CHD. The CHI-RON study, which stands for Congenital Heart Initiative: Redefining Outcomes and Navigation to Adult-Centered Care, is combining clinical and claims data insights from PCORnet with patient-reported data to help guide health care providers in how best to care for this population, not only at the point of diagnosis, but also throughout their lives.

“Many patients with CHD are diagnosed and treated as children, but it is important to remember that treatment isn’t a cure,” said Anitha John, co-principal investigator of the study. “CHD patients should continue care throughout adulthood to catch any serious cardiac issues early enough to support a positive prognosis.”

But achieving ongoing CHD care can be tricky. Because these are rare diseases, many patients fall out of care simply because there are a very small subset of providers—less than 500 across the country—who are board certified to care for these patients in adulthood. There’s also little data on the outcomes of patients who lapse in care, leaving adult CHD patients unsure of how their journey might unfold.

A holistic look at the CHD journey across three data sources

The CHI-RON study is the first of its kind to fill in these knowledge gaps by exploring three distinct types of data at once: patient-reported outcomes, claims, and electronic health records, or EHRs.

For patient-reported insights, the project is leveraging the first patient-powered registry for adults with CHD—the Congenital Heart Initiative. Patients who are recruited for this research participate via enrollment in the registry, which allows researchers to ask patients directly about health, wellness and any specific barriers to care. The effort is led by Children’s National Hospital and Louisiana Public Health Institute.

But patient-reported outcomes alone aren’t enough to fully understand the big picture of the CHD journey. That’s why the researchers are using PCORnet resources to add insights from EHR data spanning 14 participating research sites and 3,000 demographically widespread individuals. With health records for 66 million patients available for observational studies, PCORnet provides vast scale to power research on rare conditions affecting even small numbers of people.

In partnership with two claims data partners, HealthCore and CVS Health, researchers are using PCORnet to add a third layer of insights from administrative claims, which provide information on doctors’ visits, bills, insurance information and more. Existing relationships were leveraged to connect with the claims partners directly.

“PCORnet is a fantastic resource to help us fully understand the impact of gaps in CHD care,” said Tom Carton, co-principal investigator of CHI-RON. “It is essentially turbo-charging our patient-reported data with two additional layers of insights from claims and EHRs, unlocking answers that would be impossible to achieve in isolation.”

Patient-centered study design

Like all research designated as PCORnet Studies, CHI-RON is designed to put patient needs front and center. Patients sit on the study’s multi-stakeholder advisory board, adding vocal input to its metrics, endpoints and design. The partnership with the Adult Congenital Heart Association (ACHA) has also allowed the team to provide participants with much-needed resources on their underlying cardiac condition. More importantly, the ACHA collaboration has provided participants with the opportunity to interact with other patients—a key request by many of the CHI participants.

Patients also provided input into the study’s recruitment materials, sharing insights on what strategies would and wouldn’t work across the CHD community. Even the study’s name was chosen by patients, who thought the reference to Homer’s The Iliad was fitting given the character Chiron’s ability to turn wounds into healing.

“While other CHD registries exist, they are provider-based and not patient-powered,” said John. “CHI-RON’s registry is driving thousands of organic patient responses to support our research, while also giving patients living with CHD a community in which they no longer feel alone.”

The study team hopes this three-year study will empower CHD patients by establishing a system to study different care protocols and interventions aimed at reducing gaps in care.

PCORnet® Shines at 2022 Health Datapalooza

Posted on by Jodi Snare

Every year, the Health Datapalooza and National Health Policy Conference brings together leaders in data and policy to directly confront the biggest challenges and opportunities facing U.S. health care. As a pivotal resource generating fast, trustworthy answers to health questions raised by the COVID-19 pandemic, PCORnet®, the National Patient-Centered Clinical Research Network, was a hot topic at this year’s event. Researchers showcased how the Network was used across three distinct COVID-related projects during a presentation that demonstrated how PCORnet® empowered rapid COVID-19 insights.

“The concrete results that PCORnet Network Partners delivered through the pandemic are impressive, and this was a wonderful opportunity to share them broadly with an audience of policy leaders, big thinkers and problem solvers,” said Russell Rothman, moderator for the presentation and chair of the PCORnet Steering Committee. “The Network’s collaborative use of data, powerful infrastructure and commitment to patient engagement has made it an important resource for bringing meaningful insights to questions around everything from healthcare worker burnout to national trends, long-COVID, and more. I’m proud of what we’ve accomplished and look forward to using the Network for more good work in the future.”

PCORnet-enabled answers to COVID-19

With access to data from everyday encounters with more than 66 million people across the U.S., PCORnet has long been successfully supporting large-scale, multi-site research. However, interest in the Network surged during the pandemic, when its broad scope and research-ready infrastructure helped deliver rapid answers to inform public health. PCORnet leaders Russell Rothman, Emily O’Brien, Tom Carton and Suchitra Rao presented at the 2022 conference about results from three different PCORnet-enabled projects:

HERO Research Program: The HERO Research Program was rapidly launched in April 2020 to understand the challenges facing healthcare workers and recruit healthcare workers for COVID-19 research studies. It now includes over 55,000 people in every U.S. state who report on their perspectives and experiences via an online portal.

Collaboration with the CDC: Researchers partnering with the U.S. Centers for Disease Control (CDC) are using PCORnet resources to shape the national understanding of COVID-19 by leveraging electronic health record (EHR) data that has been standardized to the PCORnet® Common Data Model. To date, researchers have used aggregated, de-identified data representing nearly half a million patients with a COVID-19 diagnosis and/or positive lab test to learn about patterns of infection, treatment effectiveness, vaccination, virus variants, healthcare utilization, and complications of infection and recovery.

RECOVER: PCORnet resources are furthering the goals of the NIH-funded Researching COVID to Enhance Recovery (RECOVER) initiative by developing large EHR databases to enhance our understanding of the epidemiology and risk of long-COVID. This PCORnet-enabled research program includes two teams focusing on children and adults respectively and working collaboratively to characterize risk factors for long-COVID.

“Each of these projects are distinct and really showcase the spectrum of PCORnet Network Partner strengths,” said Tom Carton of the Louisiana Public Health Institute, principal investigator for REACHnet, a PCORnet Network Partner, and an investigator with the CDC collaboration. All are enabled by PCORnet and centered around the needs of patients. This is only the beginning.”