Announcements and Press Releases

16 new sites will expand the diversity of PCORnet®

Posted on by Jodi Snare

A differentiator for PCORnet® has always been its ability to capture insights on diverse populations that clinical research studies often miss—and now that diversity is about to get even more robust. PCORI approved funding for the addition of 16 sites to expand the reach of the eight PCORnet® Clinical Research Networks (CRNs), a move that underscores PCORI’s continuing investment in the Network’s growth.

“PCORnet is a go-to resource for researchers who want to study the full fabric of the U.S. population —people from all walks of life, identifying across all racial and ethnic groups, living in all places and circumstances,” said Betsy Shenkman, PCORnet Steering Committee Chair. “This expansion makes the Network’s breadth and depth even more robust, empowering PCORnet users to close more gaps in evidence than was previously possible.”

Data insights from the following 16 sites will be available in spring of 2024.

Expanding the ADVANCE CRN:

Expanding the GPC CRN:

Expanding the INSIGHT CRN:

Expanding the OneFlorida+ CRN:

Expanding the PaTH CRN:

Expanding the PEDSnet CRN:

Expanding the REACHnet CRN:

Expanding the STAR CRN:

PCORnet® Leaders Hit the Road to Share How the Network Works and Why Researchers Should Use it to Power Their Next Study

Posted on by Jodi Snare

Why and how should you use PCORnet®? That’s the question PCORnet leaders sought to answer when they recently presented at an adjunct event for AcademyHealth’s 2023 Annual Research Meeting (ARM) and at a half-day virtual convening held by NORC in collaboration with PCORI. Both events were a chance to showcase the uniqueness of PCORnet, which was developed in 2014 with funding from PCORI as a national resource for all.

The Network represents data from everyday healthcare encounters with more than 30 million people across the U.S. each year through partnerships with eight large clinical research networks, or CRNs. These data are brought into a standard, query-ready language by the PCORnet® Common Data Model, and patient communities are continuously engaged in all PCORnet-enabled efforts to ensure that research questions and outcomes are meaningful to patients. In today’s clinical research ecosystem where data, patient insights, and clinician expertise are often siloed elements that need to be plucked from separate resources, PCORnet unites all three, offering users a synergy they can’t find elsewhere.

“Since the Network was developed, it has proven its ability to drive fast, representative research results time and again,” said Adrian Hernandez, PCORnet® Coordinating Center principal investigator and executive director for the Duke Clinical Research Institute. “With each new project, our processes are more streamlined, our data are broader and more refined, and our connections across the PCORnet® Network Partners are tighter. These are success stories we want to get out into the research community. The Network is open for business and open to all—just knock on the PCORnet® Front Door to get started.”

Roadshow recaps

The first stop on PCORnet leaders’ roadshow was at AcademyHealth’s 2023 ARM, an event that draws more than 2,500 diverse stakeholders at the intersection of health, health care, and policy to share important findings and showcase the latest research on how to improve our nation’s health system.

After a brief introduction to PCORnet and its use for research, the event kicked into high gear with breakout sessions to shed light on how PCORnet infrastructure is addressing barriers related to using real-world data and incorporating patient and stakeholder engagement in national-level comparative clinical effectiveness research studies. Breakout sessions focused on PCORnet-accessible data, the PCORnet® Front Door, and potential funding opportunities available from PCORI.

“Having three topic-specific breakout sessions allowed us to get into the details potential users of the Network want to know,” said Hernandez. “For example, how does the data query process work in PCORnet, what data are available to address a given research question, and how can the PCORnet® Network Partners support your patient engagement strategy? ARM was a fantastic forum to answer these questions.”

The half-day virtual convening, hosted by NORC in collaboration with PCORI, “An Assessment of PCORnet: Stakeholder Convening,” offered attendees a deep dive into the PCORnet experience from the perspective of those who have used the Network first-hand. The meeting was split into two sections. The first focused on the preliminary findings from the assessment of PCORnet users’ experiences presented by NORC. The second section focused on discussing future opportunities to advance and evolve the Network.

The highlights of this event were the panel discussions, which captured thoughts from PCORnet® Steering Committee patient partners, the Coordinating Center, PCORnet® CRN principal investigators, PCORnet® Study investigators, and research funders. From sharing their personal experiences, to reflections on the preliminary assessment findings and opportunities to advance the Network, the discussion was a thoughtful reflection of how PCORnet infrastructure has grown and its potential to drive important patient-centered research.

“We’ve only scratched the surface of the Network’s full potential,” said Hernandez. “The high attendance at our two roadshows is a strong indicator that the research community sees PCORnet as a key resource on the journey to a healthcare ecosystem where the patient voice is at the fore of every effort.”

PCORnet leaders will maintain the momentum, with more events planned in the coming year. Watch this space for updates and opportunities to attend!

Researchers will use PCORnet® resources to explore whether cancer screening practices change after weight loss surgery

Posted on by Jodi Snare

According to the U.S. Centers for Disease Control and Prevention, 40 percent of all cancers diagnosed in the U.S. since 2014 were associated with overweight and obesity. Can weight loss associated with bariatric surgery reduce the risk of some cancers? Maybe, according to a recent meta-analysis of several key studies, which found that people with obesity who had bariatric surgery had a substantially lower risk of developing five types of solid tumors. But it remains unclear if the factors driving the risk reductions might be physical, behavioral, or both.

Now, a new study funded by the National Cancer Institute (NCI) will use PCORnet resources to understand if one of those factors is a change in adherence to recommended preventative cancer screenings after bariatric surgery. We know, for example, that women with obesity are less likely to undergo regular screenings, like pap smears and mammograms. Investigators for the new PCORnet® Study will determine if undergoing bariatric surgery influences such trends.

“People living with obesity are at higher risk for many types of cancer, and yet they tend to have lower rates of cancer screening than other individuals. As a result, when cancer occurs, it may be detected later, which can contribute to worse outcomes,” said Kathleen McTigue, principal investigator for the PaTH Clinical Research Network, one of six PCORnet® Network Partners contributing to the NCI study. “This study will help us better understand the impact of bariatric surgery on preventive screening practices.”

McTigue believes the challenges that people who are living with severe obesity face regarding cancer screening could be reduced following bariatric surgery. For example, in the process of preparing for surgery, patients may become more familiar with the healthcare system and aware of the need for screening. Likewise, weight loss may lesson concerns related to body image and modesty.

Building on earlier PCORnet-leveraged work

NCI’s interest in PCORnet as a resource to fuel its research stemmed from the successful PCORnet® Bariatric Study, which launched in 2016 as a retrospective, observational comparative effectiveness study designed to capture accurate estimates of 1-, 3-, and 5-year benefits and risk of bariatric surgery. Using PCORnet resources, the study team collaborated with 41 sites across the U.S. to glean insights related to more than 46,000 patients. Its results continue to provide important reference information for patients and providers about real-world bariatric surgery outcomes.

“NCI approached us through the PCORnet® Front Door to see if we could leverage the patient and data partnerships established with the original bariatric study to bring new insights around cancer screenings to light,” said McTigue. “It has been wonderful to see the Network recognized for its capacity to support research at scale and surface new answers around cancer and obesity, two important topics that impact millions of Americans.”

The project will find answers by looking at de-identified electronic health record (EHR) information accessible across six sites participating in PCORnet. As with all PCORnet® Studies, the NCI study will embed patient input throughout the project lifecycle, with bariatric surgery recipient Neely Williams serving on the study leadership team and sitting on its Stakeholder Engagement Committee.

“I am thrilled to be a part of this important research, which will bring more clarity to the relationship between bariatric surgery and cancer—a question that is certainly of great interest to bariatric surgery recipients like me,” said Williams. “The participation of myself and others on NCI’s Stakeholder Engagement Committee for this study will help ensure the lived experience of patients is considered in the development and execution of this research.”

Looking to the future

McTigue hopes that this initial study is only the beginning. This work may ultimately lead to a larger NCI project exploring other connections between weight loss and cancer via PCORnet. Such work would link EHR data with tumor registry data, building from the PCORnet® NET-PRO Study, which is currently comparing the effects of different treatment approaches on neuroendocrine tumors.

“We are excited by the potential for PCORnet to serve as a powerful resource for conducting large-scale cancer research,” said McTigue. “Cancer is consistently a leading cause of death in the US, and over 40% of US adults live with obesity.  We need to learn all we can as quickly as possible—and thankfully, PCORnet offers the infrastructure to make it happen.”

PCORnet® Resources to Power Study Exploring the Relationship Between COVID-19 and Diabetes

Posted on by Jodi Snare

A large new study will use PCORnet® to explore the relationship between COVID-19 and diabetes with the goal of guiding future treatment interventions and public health approaches. Vanderbilt University Medical Center (VUMC) received a four-year, $28 million grant from the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the National Institutes of Health, this week to support this research.

The COVID-19 and Diabetes Assessment (CODA) Study will use PCORnet and the TID Exchange, a research network of diabetes centers, to identify and recruit 1,600 participants who either have a known COVID-19 infection within the past 90 days and have also been diagnosed with diabetes during that period, or  have a recent diabetes diagnosis and no known COVID-19 infection in the past year. The study will compare and follow the two groups for two years.

With the ability to engage with hundreds of healthcare sites and access to electronic health record data from more than 30 million patients annually, PCORnet resources are critical to ensuring the CODA Study captures a broad and diverse representation of patients. In alignment with the patient-centered focus of PCORnet® Network Partners, the study will also answer important questions patients are asking about the link between diabetes and COVID-19. Namely, to what extent does COVID-19 cause worse glycemic control, vascular function, inflammation, and increased risk for blood clots in people with either type 1 or type 2 diabetes? The study will also explore the role of genomic, social, and environmental factors on metabolic function and the impact of COVID-19 infection and COVID-19 treatments on diabetes-related outcomes.

“This study will greatly expand our knowledge about the relationship between COVID-19 and diabetes and will also provide us novel information about what factors influence the early course of diabetes in children and adults with type 1 or type 2 diabetes,” said principal investigator and project leader Russell Rothman, MD, MPP, of VUMC and Principal Investigator of the STAR Clinical Research Network.

Rothman will co-lead the CODA Study alongside Alvin C. Powers, MD, of Vanderbilt University; Jonathan Schildcrout, PhD, of Vanderbilt University; and Jason Block, MD, MPH, of the Harvard Pilgrim Health Care Institute. Recruitment will begin soon.

Smoother Processes, Better Data Curation: A Longtime Network User Speaks to the Evolution of PCORnet®

Posted on by Jodi Snare

Flash back to 2016, when Hamilton had just premiered on Broadway, the Rio Olympics were in full swing, and Duke University cardiologist Neha Pagidipati first heard about a relatively new network of clinical research networks capable of producing granular insights from large, representative patient datasets across the U.S. At the time, Neha was trying to understand national patterns of weight management, and PCORnet® was one of the few available data sources capable of capturing a tremendous sample size without loss of important detail she needed to deliver on her study’s goals.

“PCORnet immediately caught my interest because it could capture lab results, blood pressure, and body mass index (BMI) data at scale,” said Neha. “With support from 11 sites participating in PCORnet, our study team successfully teased out associations between weight change and cardiometabolic risk factors in a massive, real-world population of U.S. adults with overweight or obesity. The results shed much-needed light on these conditions that impact millions of people living in the United States.”

The observational study, which looked at outcomes related to more than 800,000 people over a 12-month period, addressed exactly the kind of evidence gaps the Network was designed to answer when it was first funded in 2014.

While randomized controlled trials (RCTs) have long been the gold standard of clinical research, they typically include smaller, carefully selected, homogenous populations and are undertaken in specialized care settings. For these reasons, they often don’t illuminate all the information patients need to know, like how an intervention fares in real-world settings and among people with a wider range of circumstances.

PCORnet was developed with support from the Patient-Centered Outcomes Research Institute (PCORI) to address these gaps by serving as a national resource that brings together data from everyday health encounters, research expertise, and patient partnership. Observational research fueled by the Network complements RCTs with real-world insights that drive improved health outcomes across the U.S.  PCORnet also supports more efficient participant recruitment and other services to advance the conduct of RCTs.

From big idea to proven national resource

The groundbreaking nature of PCORnet meant there was no blueprint for building the Network infrastructure. In 2016, when Neha first used the Network, the PCORnet® Common Data Model (CDM) was still in development. In fact, at the time, BMI codes were not yet fully mapped, meaning Neha’s study had to work through some kinks to align the disparate ways of coding BMI in medical records across the clinical research networks (CRNs) comprised of dozens of health systems and clinics that are participating in PCORnet. PCORnet® CRNs also had not worked with one another long enough to establish seamless processes and advanced knowledge of the data available for research.

Today, all that has changed.

“PCORnet has made progress in leaps and bounds from its early days in 2016,” said Neha. “The organization of the Network is smoother, and results are much more accelerated, vetted by PCORnet® CRNs who have worked together for years. The data available is also much more advanced. Today’s PCORnet® CDM maps a wealth of rich data fields to support observational research, and it is growing all the time.”

Currently working on her fourth PCORnet-supported study, Neha knows the Network better than most. Her latest research is comparing the safety and effectiveness of two glucose-lowering drugs in patients with type 2 diabetes. Neha wanted to include a relatively high number of patients taking these drugs who also have diabetic kidney disease (DKD), which drove her to once again select PCORnet as her research network of choice.

“We needed a network that could not only capture lab data across a broad enough population to meet our DKD participant target, but also allowed us to track long-term outcomes in these patients,” said Neha. “Frankly, PCORnet resources offer the only networked datasets out there that could support this research.”

In addition to the safety and efficacy questions, Neha’s study is also trying to understand why patients with type 2 diabetes may not receive guideline-recommended screening for DKD. It is the largest study to date asking these important questions, which is significant considering the high prevalence of type 2 diabetes and broad use of glucose-lowering drugs across the nation.

Neha says demand for PCORnet will only continue to increase as communities reap the benefits this kind of patient-centered, real-world research offers.

“We won’t find the answers diverse communities need if we only look to studies with a small number of homogenous participants,” said Neha. “Real-world, patient-centered answers start to surface only when we look across the country with a wide lens, capturing all types of people in all types of circumstances — this is the true power of PCORnet, and its infrastructure delivers.”

We’ve Come a Long Way: Celebrating Research Progress on International Clinical Trials Day

Posted on by Jodi Snare

Every year on May 20, the date of the first-ever clinical trial conducted by James Lind in 1747, the world marks International Clinical Trials Day. It’s a time to celebrate all that has been accomplished by the clinical research community—clinicians, health systems, patients, and caregivers—who have joined forces to usher in significant advances to clinical trials since that time. Lind urged scientists to turn their hunches into evidence-driven facts and inspired the future of clinical trial design and research. It’s an example we are still following today, but with much more sophisticated tools, techniques, and approaches—many of which PCORnet has advanced.

Harnessing the power of real-world data

While the emergence of randomized controlled clinical trials (RCTs) like Lind’s gave us evidence-driven facts, such trials often fail to capture the full diversity of a population. Moreover, as they are usually conducted in specialized and carefully controlled settings, they frequently don’t tell us how solutions will perform in real-world settings. For a deeper understanding of how therapies play out in everyday circumstances, we need partnership across patients, health systems and other stakeholders. That’s why the PCORnet infrastructure was developed as a broad network of eight Clinical Research Networks (CRNs), with hundreds of sites across the country providing inpatient and outpatient healthcare for over 30 million patient encounters each year.

With the ability to access electronic health records (EHRs) and other health data sources through PCORnet, researchers can conduct studies using a wealth of information, including demographic data, medical history, treatment outcomes, and patient-reported outcomes. This rich data enables researchers to conduct more efficient and comprehensive studies that complement RCTs, uncover hidden patterns, and generate insights that can drive evidence-based clinical decision-making. Utilizing real-world data not only accelerates the pace of research, but also enhances the generalizability of study results to diverse patient populations.

Bridging communities

Traditionally, decisions surrounding the design, conduct, and dissemination of clinical trials have been made solely by research scientists. As a result, research has run the risk of being inefficient, overly burdensome for patients, and even ineffective, as the outcomes studied did not necessarily reflect the true needs of patients. We now know that when it comes to optimizing research design and implementation, collaboration is key. Multi-stakeholder insights, including those from patients as well as caregivers, clinicians, and research experts, bring a holistic lens to research that improves outcomes across the board.

PCORnet was developed with funding from PCORI in 2014 as the first national resource to deeply embed diverse patient and stakeholder engagement throughout the clinical trial process. In every research project designated formally as a PCORnet Study®, patients are actively involved in shaping research priorities, study design, and implementation, so that the clinical trials address their needs and concerns. The infrastructure of the Network also connects users with valuable resources and research expertise across the PCORnet ecosystem, creating a collaborative environment that helps researchers optimize their studies’ design and conduct.

Looking ahead

The research community has come a long way, and PCORnet resources have played a big role in ushering in a new era of patient-centered research—but there is still work to be done. As we celebrate this International Clinical Trials Day, let’s keep our eye on the horizon. The Network will continue to evolve, promising even more advances toward a world where research is truly patient-centered and where the collective efforts of diverse stakeholders shape the future of health care.

Are you interested in learning how PCORnet resources can support your next research study? Start the conversation by reaching out through the PCORnet® Front Door.

(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 and more diverse set of patient data, leading to more comprehensive and robust research findings. Patients should feel confident that research results hold true for people who share their race, ethnicity or background. PPRL helps capture that diversity.
  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 and more diverse 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.”