News and Events

PCORnet® Study Shows Digital Interventions May Help Reduce Early Childhood Obesity

Posted on by Jodi Snare

Results from the Greenlight Plus Study were recently published in JAMA, demonstrating that adding a digital component to pediatric counseling could effectively reduce obesity in children. Conducted across two PCORnet® Clinical Research Networks, INSIGHT and STAR, the study involved families from a variety of backgrounds.

Study Highlights and Key Findings

The JAMA publication Effectiveness of a Digital Childhood Obesity Prevention Intervention Combined with Pediatric Health Behavior Counseling describes how the study enrolled 900 parent-infant pairs across six U.S. medical centers, following them for two years. Researchers compared two approaches:

  • Standard health behavior counseling at routine pediatric visits (the Greenlight Intervention)
  • Combined counseling and tailored digital intervention (the Greenlight Plus Intervention), featuring personalized text messages and a web-based dashboard.

At the end of the 24-month period, results showed the digital intervention group showed a significant reduction in early obesity markers compared to the counseling-only group. Specifically, the children who received the digital intervention achieved:

  • Lower average weight-for-length trajectory
  • 41% lower obesity rate (7.4% vs. 12.7% in counseling only group)

The findings suggest a combined digital and clinical approach can play a role in promoting healthy growth patterns in early childhood, especially for those at higher risk of obesity due to socioeconomic factors.

PCORnet® Infrastructure Enables Success

This PCORnet® Study tapped into the extensive resources and collaborative framework provided by the PCORnet infrastructure, which played a crucial role in providing:

  • The PCORnet® Common Data Model for streamlined data harmonization
  • Single IRB process for expedited multi-site
  • Standardized, yet efficient data collection methods
  • Patient-centered implementation framework

These helped the study team successfully implement a digital health intervention at scale while addressing public health challenges.

Learn more about conducting research through PCORnet at the PCORnet® Front Door.

Leverage PCORnet® to Advance Pain Research with New PCORI Funding Opportunity

Posted on by Jodi Snare

A PCORI funding opportunity is opening new pathways to solutions for the millions of people in the U.S. whose quality of life is limited by pain. With up to $12 million in direct costs available for patient-centered studies addressing acute and chronic pain, this funding initiative presents an opportunity for researchers to make a real difference—and PCORnet® is perfectly positioned to support these efforts.

PCORnet offers a robust infrastructure for conducting national-scale, comparative clinical effectiveness research into the experiences of more than 47 million people in the U.S. When it comes to pain research, a national scale is key. By studying large, varied groups, researchers can identify patterns, understand unique pain trajectories, and develop tailored interventions that are effective for a wide range of patients, reflecting the complexity of pain itself. With its ability to connect researchers to patient populations and real-world data, PCORnet was built to support studies that not only advance pain management but also tailor solutions to patients' specific needs, driving more effective interventions.

CaRISMA: A Case Study in Pain Research with PCORnet

To understand how PCORnet can be used to advance pain research, consider CaRISMA, a PCORnet® Study with early findings around the impact of depressive symptoms on chronic pain outcomes in people living with sickle cell disease. Many sickle cell disease patients experience severe chronic pain crises, often coupled with higher rates of depression and anxiety. Using the extensive data resources and patient recruitment capabilities available via PCORnet, the CaRISMA study team enrolled 357 adults with sickle cell disease to understand the relationship between mental health and pain.

“Using the PCORnet infrastructure, we have been able to overcome many of the typical challenges that come with research into pain caused by sickle cell disease, including the geographic spread of patients and the complex and varied nature of their pain,” said Charles Jonassaint, CaRISMA principal investigator.

To recruit participants and bring the pragmatic CaRISMA trial to life, the study team worked with PaTH, a PCORnet® Clinical Research Network. Through this partnership, the study team learned the sickle cell disease community preferred digital communication versus other formats. With this information in mind, the team developed a smartphone app to deliver digital cognitive behavioral therapy (CBT) to half of the study participants. The other half of participants received educational content on sickle cell disease via a smartphone app. The study team is exploring whether either approach impacted daily pain. Early findings were published in the British Journal of Hematology in January 2024.

“Education or CBT may not eliminate pain altogether, but if we can use one or both of these approaches to manage the pain in ways that meaningfully improve patients’ quality of life, that is an important win for the pain community,” said Jonassaint.

Get Started with PCORnet® for Pain Research

With this new PCORI funding opportunity, researchers have the chance to similarly explore new avenues in pain research using PCORnet. Here are three steps you can take today to get started:

  1. Visit the PCORnet® Front Door to learn how you can use PCORnet to support your pain research.
  2. Register for one or both of our upcoming information sessions:
  3. Sign up for a one-on-one Office Hours session with PCORI staff to answer your questions specific to this funding announcement.

This and other PCORI funding opportunities will open on Dec. 3, 2024, so start making your plans now to apply. Check out the full PCORI Managing Pain Topical Funding Announcement for more information.

New Paper Explores the Power of PCORnet® to Enhance Health Surveillance

Posted on by Jodi Snare

A new paper published in the journal Preventing Chronic Disease highlights the pivotal role of PCORnet® in transforming national health surveillance.

Surveillance, which involves collecting and analyzing health data from various sources to track the spread of diseases, monitor health trends, and detect any new health threats, is traditionally achieved through surveys and public health reports. While these provide valuable information on the epidemiology of chronic and infectious diseases, the increasing availability of electronic health records, or EHRs, brings opportunities to fill information gaps that national surveillance systems do not capture (e.g., patient-level geographic information, longitudinal data, etc.). This manuscript explores the promise of PCORnet to help researchers efficiently glean these kinds of insights from EHRs on a national scale to improve surveillance.

Key Highlights from the Manuscript

  • Leveraging PCORnet fills gaps in existing surveillance data: PCORnet offers unparalleled access to secure, deidentified patient-level geographic information on a broad scale, as well as comprehensive longitudinal clinical data generally not available through existing national surveillance systems. PCORnet can also offer a granular view of geographic data units, like ZIP codes and census tracts, to support more reliable surveillance data.
  • Pilot projects demonstrate value: Pilot surveillance projects within PCORnet have highlighted the robust infrastructure, which was instrumental during the national COVID-19 public health response. These projects offered critical lessons in utilizing PCORnet for efficient surveillance.
  • PCORnet supports faster surveillance: During fast-moving health crises, answers can’t Researchers can use PCORnet to glean rapidly refreshed data with short latency, making the infrastructure useful for tracking infectious disease outbreaks and chronic disease trends.

The use of patient-centered distributed research networks like PCORnet has the potential to meaningfully enhance health surveillance research. With extensive data resources, streamlined processes, and successful pilot projects aimed at meaningfully improving the lives of patients, PCORnet has proven itself an invaluable resource for advancing public health.

Read the full manuscript.

PCORnet Leaders Highlight Transformative Research at ARM 2024: Five Key Takeaways

Posted on by Heather Wilson

The AcademyHealth Annual Research Meeting (ARM) 2024 offered the opportunity to share some of the unique features of PCORnet®, with leaders highlighting how the multi-stakeholder ecosystem has enhanced researchers’ capacity to conduct national-scale comparative clinical effectiveness research (CER). The panel session, “Multi-Stakeholder Engagement and Collaboration: What We’ve Learned from Patient-Centered Research Using PCORnet,” brought panelists together to discuss how the PCORnet infrastructure works. It also shed light, through real-world examples, on some of the ways use of PCORnet is speeding patient-centered insights that improve clinical care.

Held at the Baltimore Convention Center on June 30, the session featured a panel of experts: Dr. Erin Holve, Chief of Research Infrastructure at the Patient-Centered Outcomes Research Institute; Al Richmond, executive director of Community-Campus Partnerships for Health; Dr. Kathleen McTigue, principal investigator for PaTH, a PCORnet® Clinical Research Network; and Dr. Tom Carton, chair of the PCORnet® Steering Committee.

Five Key Takeaways

  1. Visit the PCORnet® Front Door: PCORnet can support a range of study designs, including data-only projects, observational research, and clinical trials, and the panel emphasized that all collaboration with PCORnet resources starts at the PCORnet® Front Door.
  2. PCORnet resources can address significant research questions: PCORnet® Network Partners are primed and equipped to tackle the “big audacious questions” that often require incredible resources and infrastructure, such as comparing clinic-based and community-based peer support for individuals with intellectual and developmental disabilities (IDD) and evaluating melatonin versus behavioral therapy for sleep. This point is underscored by public query reports highlighting how PCORnet data resources could be used to support three priority research areas: IDD, telehealth, and maternal morbidity and mortality.
  3. Community organizations can benefit from PCORnet resources: Community organizations can leverage PCORnet to address their specific research needs. Notable examples given by the panel include collaborations with rare disease communities. Case studies explored by the panel highlight the practical ways in which investigators can connect with and leverage PCORnet resources to enhance their research efforts.
  4. The collaborative nature of the PCORnet infrastructure is a differentiator: The PCORnet governance structure is designed to facilitate extensive support through its resources. When utilizing PCORnet, researchers gain access to a wealth of expertise across various therapeutic areas. They also benefit from the insights provided by PCORnet® Network Partners, who possess in-depth knowledge of how their site’s data can best support research endeavors. Panelists emphasized the critical role of patient engagement in research powered by PCORnet®, using studies like the PCORnet® Bariatric Study and ACTIV-6 as examples.
  5. Real-world success stories continue to prove the value of PCORnet: The value of PCORnet continues to be demonstrated through a wide array of real-world success stories. PCORnet® Network Partners have effectively addressed a wide range of health services research and public health questions, showcasing versatility and impact. Projects like BP Control Lab, the U.S. Centers for Disease Control and Prevention (CDC) COVID-19 collaboration, the RECOVER initiative, and the CHI-RON project, highlight the capacity of PCORnet to support large-scale research on emerging and chronic health issues, as well as opportunities for rare disease research and engagement across all communities.

Overall, ARM 2024 was a success that demonstrated the potential of PCORnet to transform CER through robust stakeholder engagement and collaboration. By highlighting real-world examples and providing practical guidance, presenters empowered health services researchers to harness PCORnet resources for impactful patient-centered research. Would you like to engage PCORnet resources? Start by visiting the PCORnet® Front Door.

Maternal Morbidity and Mortality: Insights from PCORnet®

Posted on by Jodi Snare

Unexpected outcomes during labor and delivery that lead to severe complications or death, collectively known as maternal morbidity and mortality (MMM), have been on the rise in the United States in recent years. A PCORnet® data report offers valuable insights into the primary demographics and clinical conditions of individuals experiencing MMM across the country.  

The report serves as a crucial resource for researchers, enabling them to assess how PCORnet data resources can be used to address the pressing need for national-scale, patient-centered comparative clinical effectiveness research (CER) on MMM. By providing a comprehensive overview of MMM trends and associated factors, this report has the potential to inform and guide future research efforts aimed at improving maternal health outcomes in the United States. 

Key Findings from the Public Query Report 

With a vast infrastructure that represents everyday healthcare encounters with more than 30 million people every year, PCORnet is a powerful resource to support health system research efforts on MMM. The recent PCORnet query, which explored pregnancy-related incidents occurring between October 1, 2016, and January 1, 2022, surfaced key findings relevant to MMM researchers: 

  •  PCORnet resources represent a broad population of people affected by MMM: 
    • More than 1.3 million patients with delivery events identified 
    • Nearly 1.5 million patients who experienced delivery or pregnancy interruption events recorded 
  • Demographic representation of people affected by MMM is varied: 
    • Average age of patients: 29.7 years 
    • Racial breakdown: White: 56%, Hispanic 21%, Black or African American: 20% 
  • Maternal morbidities are wide-ranging and complex: 
    • 21 severe maternal morbidities identified  
    • Examples include blood transfusions and acute renal failure 
    • Occurrence rate: Below 1% for the cohort
  • Focused research will be key to drive better MMM outcomes: 
    • Findings underscore the complexity of maternal health issues 
    • Targeted intervention strategies are recommended 

The Road Ahead 

The PCORnet infrastructure, providing access to a standardized data model and an extensive network of clinical sites, is pivotal for future MMM research. The insights gleaned from this query provide a foundation for understanding maternal health trends and can aid in planning patient-centered CER studies. 

Would you like to explore how PCORnet data resources can support your next study? Start the conversation by visiting the PCORnet® Front Door.  

Patient Partners Reflect: Melissa Bronson Shares Her Thoughts on the Network 10 Years In

Posted on by Jodi Snare

Melissa Bronson is a caregiver by nature. Long before her son was diagnosed with a rare kidney disorder, she was working as a special education teacher responsible for supporting students with learning differences. Now, as a Patient Partner on the PCORnet® Steering Committee, Melissa is activating her caregiving insights to improve national-scale, comparative clinical effectiveness research powered by PCORnet®. We spoke with Melissa as part of our 10-year anniversary celebration to hear what she values most about PCORnet, how PCORnet has evolved over this last decade, and her vision for the next 10 years.

How did you get involved in clinical research? 

Five years ago, my son was diagnosed with a form of glomerular disease, which reduces the kidneys’ ability to maintain the right balance of proteins and red blood cells in the bloodstream. Each glomerular disease is a bit different, and the unmet need in understanding these differences makes research and drug development for these disorders challenging – with so many different symptoms, what works for one may not work for another.  

Early into my son’s diagnosis, it was clear patients and caregivers are important to helping research teams better understand these conditions so they can conduct effective trials. That is when I learned about the Glomerular Learning Network (GLEAN), a collaborative of nine pediatric institutions working to improve the health of children like my son through clinical quality improvement and research. GLEAN is part of PEDSnet, a PCORnet® Clinical Research Network. 

What inspired you to serve on the PCORnet® Steering Committee? 

The more I learned about PCORnet through GLEAN, the more I saw how much study teams using PCORnet integrate the patient and caregiver voice into research. I was inspired by the opportunity to not only collaborate directly with the principal investigators for studies being conducted, but to do so within a culture that truly values my input and puts it to action.  

From my very first day on the Steering Committee, I was supported by the full team. The Steering Committee leadership comes to all the Patient Partners after our meetings and asks if we have any additional feedback we did not get to share; they also consistently seek out our opinion on how the team can improve. Their support is helping me be more confident in sharing my voice and using my role to improve the research process.  

This year, we are celebrating 10 years of PCORnet. How do you think the PCORnet infrastructure has impacted patient-centered research? 

If someone had predicted ten years ago that I would be welcomed onto the Steering Committee for a national resource that supports the conduct of comparative clinical effectiveness research, I would not have believed them. Not only because my son’s condition had not yet been diagnosed, but also because incorporating the patient’s perspective into the clinical research was not common practice in those days. The patient-centered requirement for all studies powered by PCORnet® has catalyzed the idea that patients need to have a role in the design and conduct of research that is intended to benefit us.  

PCORnet® Network Partners are also continuing to push boundaries in this area. They have expanded the Steering Committee from three to eight Patient Partners, meaning we now have an equal vote with the academic committee members in our meetings. Patient Partners participate in other relevant meetings, too, including the PCORnet® Data Committee, which I recently joined. Step by step, we are getting closer to bringing that patient voice into every aspect of the research process, which is exciting progress. 

What do you hope research powered by PCORnet® achieves in the next 10 years? 

The broad scope of PCORnet data resources means we can already capture many populations that are frequently excluded from traditional research, and I see a lot of promise in continuing to expand the reach of PCORnet. I would also like to see more stakeholders brought into the research fold, including people like nurse practitioners who would bring a unique perspective.  

What advice would you give to other patients or caregivers who may be interested in getting involved with PCORnet? 

Partnering with research teams can seem intimidating, but the truth is, your perspective is incredibly relevant and needed. I would say that before you decide it is not for you, just try it. You might be surprised at how validating and empowering it is to use your voice to improve the lives of others. More doors are always opening to lend research support, so reach out to your healthcare institutions to see how you can get started.  

PCORnet® National Stakeholder Group Provides Strategic Insight

Posted on by Jodi Snare

The PCORnet® National Stakeholder Group met in May to review recent progress of PCORnet over the past six months and to provide strategic guidance that supports PCORnet® Network Partners in their efforts to enable national-scale patient-centered comparative clinical effectiveness research (CER). The PCORnet® Stakeholder Group works to bridge an understanding of federal- and private-sector health data and research initiatives that are potentially relevant to PCORnet® Network Partners.

At the meeting, members learned about principles and strategies to guide PCORnet, the Maturity Model for PCORnet, and the potential of new data query reports to answer big questions in intellectual and developmental disabilities and maternal morbidity and mortality. Members were also updated on the progress of PCORnet data resources, which represent 30 million patient encounters at 13,000 clinical care sites across the country resulting in more than 35 national-scale PCORnet® Studies. Research using the PCORnet infrastructure has resulted in over 400 publications.

“Learning about the power of PCORnet has been eye opening for me. There are so many ways this powerful infrastructure can be used to help research national priorities for health,” said Ricardo Rocha, head of Medical Affairs at Intellia Therapeutics. “I am particularly excited to see the growth in national-scale PCORnet® Studies that are answering questions critical to the work of companies like Intellia, as well as the broader research community.”

The PCORnet National Stakeholder group was formed in 2023 and now includes members representing life science partners; federal agencies (including the Agency for Healthcare Research and Quality, the U.S. Food and Drug Administration, the U.S. Centers for Disease Control and Prevention, the Centers for Medicare and Medicaid Services, the National Institutes of Health, and the Office of the National Coordinator for Health Information Technology); and advocacy organizations (including Faster Cures, the American Heart Association, and Community-Campus Partnerships for Health).

The objectives of the group are to:

  • Understand national research priorities
  • Share information about the landscape of data sciences related to patient-centered CER
  • Make recommendations to advance methods and approaches to pragmatic clinical research
  • Think about opportunities to expand partner engagement
  • Discuss how to expand implementation and dissemination opportunities to improve healthcare delivery and population health

The group is planning an in-person meeting later in 2024 where they will continue to bridge the power of PCORnet to exciting opportunities in government, industry, and patient advocacy.

“It’s clear that the PCORnet infrastructure is a powerful tool for researchers across the U.S.,” said Al Richmond, executive director of Community-Campus Partnerships for Health “Collaboration is essential to improving the health of the nation, and PCORnet continues to be a key partner in leading patient-centered research.”

Inaugural Class of Patient Engagement Partners Graduates

Posted on by Jodi Snare

The inaugural class of Patient Engagement Partners (PEP) has graduated, marking a significant stride toward bolstering patient-centered insights in research powered by PCORnet®. The PEP program, which included six patient partners in its first year, was established to add patient representation on PCORnet governance and fortify the bridge between researchers using PCORnet resources and the lived experiences of people who will benefit from their research. This kind of active engagement in research is important to ensure research pursuits are well aligned with the needs of patients.

This inaugural PEP program comprised people with many different experiences, including those related to autism, HIV, Alzheimer’s disease, cardiovascular disease, mental illness, and more. Now that they have completed the program, these graduates are ready to bring their experiences and perspectives to a range of research activities, such as consultation with research teams on study design, support for engagement and dissemination plans (which may be one-off PCORnet® Front Door support or ongoing advisory roles), and service in a PCORnet governance or leadership role. Opportunities will be offered to PEP graduates as needed, and interested research teams can reach out to the PCORnet Project Management Office (PMO) to engage PEP graduates in their work.

“With this graduating class, we have built a go-to panel of people that research teams leveraging PCORnet can quickly connect with to generate patient-centered insights relevant to their work,” said Cherie Binns, a patient partner and leader of the PEP program. “We are so grateful to this first cohort of PEP graduates, who worked with us to stand up this program and begin establishing it as a truly valuable resource.”

“The PEP program has been a great experience,” said Michelle Fundora, a graduating PEP participant who contributed her experience as a patient advocate and family caregiver of a child with attention-deficit/hyperactivity disorder (ADHD). “I learned a lot about how research powered by PCORnet supports patient-centered outcomes, and I’m looking forward to carrying these learnings to future engagement opportunities.”

Thank you and congratulations to the inaugural class of PEP graduates! Are you using PCORnet resources to power your research and interested in insights from these graduates? Contact the PCORnet PMO to learn more about opportunities to engage their support.

It’s Been Four Years Since COVID-19 Was Declared a Pandemic. What Have We Learned from Research Powered by PCORnet®?

Posted on by Jodi Snare

On March 11, 2020, the World Health Organization declared the outbreak of COVID-19 a global pandemic, marking a pivotal moment in modern history as nations around the globe grappled with the virus’s rapid spread. The declaration triggered a collective call to action, with government, communities, and researchers uniting to find answers. PCORnet®, one of the few national research infrastructures offering access to insights from everyday health-related encounters with more than 30 million people annually, was at the intersection of all three.

From supporting a key collaboration with the U.S. Centers for Disease Control and Prevention to enabling the swift establishment of a research-ready community of healthcare workers, PCORnet resources were critical to powering key COVID-19 insights in the acute phase of the pandemic. Today, PCORnet resources continue to serve at the forefront of learning on important topics like long COVID and the effectiveness of repurposed medications to treat COVID-19. Check out the latest PCORnet brief highlighting efforts to deliver answers, then and now, to our nation’s most pressing COVID-19 questions.

Are you interested in using PCORnet resources to support your patient-centered research? Reach out to the PCORnet® Front Door today to start engaging with PCORnet® Network Partners.

From Health Records to Sweet Outcomes – A Resource to Illustrate the Journey of PCORnet®-Leveraged Data

Posted on by Jodi Snare

Have you ever wondered just how health data from people’s clinic visits are anonymized and transformed into insights that can improve health outcomes? Each step in the process, from collecting the data to removing personally identifying information and ensuring quality, is critical to the ultimate outcome: a clean, representative dataset that can be queried by researchers to better understand real-world experiences across the U.S. with no traceability back to the original records.

Through a clever analogy to the chocolate-making process, a resource on the PCORnet website helps patients better understand how data from their electronic health records, or EHRs, are made safe and secure for research use via PCORnet. This resource, which begins with cacao seeds (representing individual health records) and ends in delicious, ready-to-eat chocolate (research-ready datasets for query) was created by PaTH, a PCORnet® Clinical Research Network. Its step-by-step illustration of the journey fosters greater understanding of the often-confusing process of data transformation, a critical undertaking before researchers can leverage data from everyday healthcare encounters to answer important questions about health outcomes.

The PCORnet website has a treasure trove of resources, like this guide, to educate investigators, patients, and policymakers and improve research through evidence-based practices. Check it out today! Interested in the EHR data journey, but short on time? Watch this brief video explainer illustrating the process in under five minutes. Don’t let this sweet learning opportunity pass you by!