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.  

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.

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!

February is American Heart Month and a fitting time to spotlight the many ways PCORnet® infrastructure is helping research teams advance cardiovascular health insights that are meaningful to patients. A new brief outlines some of the most impactful cardiovascular research powered by PCORnet®, as well as published results that have already helped shape the cardiovascular research landscape.

“Heart disease is the leading cause of death in the U.S., accounting for one in every four deaths annually,” said Adrian Hernandez, PCORnet® Coordinating Center co-principal investigator. “To change these statistics, we need to better understand which interventions work to improve outcomes, not just in a controlled research setting, but across the broad fabric of the U.S. population. The PCORnet infrastructure was developed with exactly this aim in mind.”

Research teams can use PCORnet to access insights from high-quality data alongside research expertise and connection to people with lived experience to fuel comparative clinical effectiveness research in cardiovascular health and many other therapeutic areas. Using PCORnet resources, researchers have uncovered insights related to:

• prevention of cardiovascular disease and heart events;
• optimal cardiovascular treatment approaches; and
• the utility of technology in supporting outcomes for cardiovascular disease.

Interested in harnessing insights on cardiovascular health for your next patient-centered study? Knock on the PCORnet® Front Door to start the conversation and begin collaborating with the Network.

On January 9, PCORI will release the Broad Pragmatic Studies (BPS) PCORI Funding Announcement (PFA) to support high-quality patient-centered comparative clinical effectiveness research (CER). Category 3 supports PCORnet^® Studies that advance PCORI’s National Priorities for Health with direct costs of up to $12 million.*

PCORnet^® Studies are defined as those that:

• Include two or more PCORnet-partnered Clinical Research Networks
• Share study progress and performance metrics
• Exchange best practices with the Network to promote continuous learning and improvement
• Demonstrate a commitment to stakeholder engagement and partnership
• Use PCORnet resources to improve the efficiency of patient-centered CER

Are you ready to learn more and apply? Letters of Intent (LOI) are due February 6. Take these three steps to prepare:

1. Contact the PCORnet^® Front Door as soon as possible. All applicants submitting to the BPS Category 3 PFA are required to contact the PCORnet^® Front Door prior to submitting their LOI. The PCORnet^® Front Door can advise on study feasibility and costs associated with working with PCORnet, provide data to inform study design, offer best practices for stakeholder engagement, and more.
2. Register for the January 24 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. 

If you are interested in using PCORnet to power your next research effort, now is the time. Be on the lookout for more information from PCORI on January 9.

*Category 3 will support direct costs up to $10 million. However, projects may request to apply for up to $12 million in direct costs with certain justifications and approvals described within the PFA prior to application submission. Funding for innovations to support CER, such as novel approaches to returning results to participants and the use of Fast Healthcare Interoperability Resources (FHIR) technologies to engage, may also be requested in the LOI phase.

PCORnet® was a hot topic at the 2023 PCORI Annual Meeting, which took place October 4-5 virtually and in Washington, D.C. Every year, the event brings together researchers, clinicians, patients, and other partners across the health care ecosystem who are passionate about furthering patient-centered research. PCORI funded PCORnet in 2013 as a national resource where high quality health data, patient partnership, and research expertise unite to deliver answers that advance health outcomes.

The flagship infrastructure in patient-centered research

In her opening remarks, PCORI Executive Director Nakela Cook highlighted PCORnet as the flagship infrastructure for enhancing and accelerating patient-centered outcomes research, one of PCORI’s five national priorities for health. Via a partnership of clinical research networks representing major healthcare institutions across the U.S., the Network allows research teams to generate rich insights into 30 million patient encounters at more than 40 health systems. These data are deidentified to adhere to stringent patient privacy standards.

“With PCORnet, every patient interaction becomes an opportunity to leverage data that’s collected during healthcare delivery to conduct comparative clinical effectiveness research (CER) and build a stronger evidence base,” Cook said.

Cook’s claim of a stronger evidence base is backed up by hundreds of studies and more than 600 publications enabled by PCORnet data resources. This year’s plenary session titled “Powered by PCORnet: Infrastructure to Fuel National-Scale Research” gave attendees a snapshot of some of the most impactful research that the Network has powered over its 10-year history. Session speakers highlighted the growth and contributions of PCORnet over the last decade and discussed how PCORnet is positioned to support national-scale research to speed evidence generation.

PCORnet® Coordinating Center Co-Principal Investigator Adrian Hernandez opened the session by teeing up the big-picture health challenges we are currently facing in the U.S.: our healthcare burden is up, life expectancy is down, and bending the curve back requires deeper engagement of patients and communities. At the same time, the speed of science is evolving to open up new treatment options and opportunities.

“PCORnet has been designed to be part of the solution,” Hernandez said. “It is an impactful infrastructure for patient-centered CER that we hope that everyone can take advantage of.”

Hernandez emphasized PCORnet-enabled collaboration between researchers, clinicians and patient partners helps fuel both high-quality observational studies and pragmatic trials that are ushering in a new era for patient-centered CER. He called out landmark studies like ADAPTABLE, which utilized virtual visits and other pragmatic design elements before the pandemic popularized them, as well as PREVENTABLE, the PCORnet Bariatric Study, and HERO, which all addressed patient-centered questions that require insights from the broad fabric of the U.S. population.

Mariell Jessup, Chief Science and Medical Officer at the American Heart Association, discussed the importance of PCORnet as a resource to facilitate more representation in research as well as supporting the conduct of research results that will be implemented in clinical care settings.

“I see PCORnet as key to supporting discoveries from the bench to bedside,” Jessup said. “We’re excited about the future, and we think that PCORnet is a very important tool.”

The plenary also looked ahead to opportunities for PCORnet in its second decade. Mark Pletcher, professor of Epidemiology and Biostatistics at the University of California, San Francisco, highlighted two ideas: using the PCORnet® Common Data Model to study the quality of patient care, and expanding data collection to include insights from outside health care systems to better capture the U.S. population.

“PCORnet is uniquely situated to support the conduct of large studies that include the collection of patient-reported outcomes,” Pletcher said.

Two days, multiple shout-outs
While the plenary was the most high-profile event centering PCORnet at the annual meeting, the Network was referenced throughout the two-day event.

In the session “PCORI Rare Disease Research: Portfolio Highlights and Future Direction,” Anita John, Medical Director of the Washington Adult Congenital Heart program Children’s National Hospital, lauded PCORnet as especially powerful in the context of rare disease research. As an example, John shared how PCORnet data resources supported the formation of the Congenital Health Initiative, the first patient-powered longitudinal registry to improve the future of care for those living with congenital heart disease.

“This is something that we have wanted to do as a community for a long time, but our partnership with PCORnet has really enabled this to flourish,” John said.

If you weren’t able to make the PCORI Annual Meeting but are interested in learning about more outcomes from PCORnet-leveraged research, check out the recordings of the sessions from the two-day event.