HERO

HERO Registry & Trial: Healthcare Worker Exposure Response and Outcomes

Posted on by Jodi Snare
Study Updated 03/28/2024
Research Question(s):

Can a research registry of people working in healthcare help to answer important questions about the COVID-19 pandemic on medications, vaccines and healthcare worker well-being?

Primary Publication(s):
Design of the Healthcare Worker Exposure Response and Outcomes (HERO) research platform
Friedland A, Hernandez AF, Anstrom KJ, et al. Design of healthcare worker exposure response and outcomes (HERO) research platform. Contemp Clin Trials, 2021; 109:106525.

Hydroxychloroquine for pre-exposure prophylaxis of COVID-19 in health care workers: a randomized, multicenter, placebo-controlled trial (HERO-HCQ)
Naggie S, Milstone A, Castro M, et al. Hydroxychloroquine for pre-exposure prophylaxis of COVID-19 in health care workers: a randomized, multicenter, placebo-controlled trial (HERO-HCQ). Medrxiv, 2021. doi: https://doi.org/10.1101/2021.08.19.21262275

 

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 and diverse 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. Participants have reported in real-time their intentions to vaccinate, their feelings of moral injury and burnout, thoughts about returning to schools, and more. Through HERO, researchers conducted two important studies on COVID-19 prevention and vaccination.

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.”

Rapid and Collaborative Response to COVID-19

Posted on by Jodi Snare

Researchers responded rapidly and collaboratively to answer COVID-19 questions by using PCORnet resources including a flexible coordinating center, the PCORnet® Common Data Model, research-ready networks, and existing research studies that pivoted quickly. Researchers can use this resource to demonstrate how the resources of PCORnet can be used for studies that require fast answers.

Access the resource here.

HERO Research Program Reaches 55,000 Healthcare Workers in 2021

Posted on by Jodi Snare

The PCORI-funded Healthcare Worker Exposure Response & Outcomes (HERO) Registry grew to include over 55,000 healthcare workers in all 50 states over the past year.

Funded by the Patient-Centered Outcomes Research Institute (PCORI), coordinated by the Duke Clinical Research Institute (DCRI), and enabled by PCORnet®, the National Patient-Centered Clinical Research Network, HERO relies on partnerships with PCORnet Network Partners who ensures that any interested healthcare or emergency worker can easily join the registry.

Read about the HERO Research Program’s accomplishments in 2021 and how the program is conducting research with and for healthcare workers and highlighting healthcare workers voices and opinions through its “hot topics” research.

PCORnet®-Enabled HERO Registry Tops 20K Participants as Pfizer Partners for Vaccine Safety Study

Posted on by Jodi Snare

The Healthcare Worker Exposure Response & Outcomes (HERO) Registry, which unites healthcare workers to better understand and stop COVID-19, has enrolled over 22,000 participants. HERO is funded by the Patient-Centered Outcomes Research Institute (PCORI), coordinated by the Duke Clinical Research Institute (DCRI), and enabled by PCORnet®, the National Patient-Centered Clinical Research Network. Its goal is to use the experiences of frontline health workers to develop fast knowledge to keep these workers and their communities safe and healthy in the COVID-19 pandemic.

"We are thrilled to see the HERO Registry continue to grow, a clear indication that frontline health workers across the nation are united in their commitment to fight COVID-19, both in and out of the hospital setting," said Emily O’Brien, principal investigator for the HERO Registry. "Their experiences are tremendously valuable in helping the research community better understand the physical and mental toll of this virus, which will improve COVID-19 care across the board."

The partnership with PCORnet Network Partners has been central to the registry’s success. Network Partners have ties to a well-established community of healthcare systems with experience collaborating on large clinical studies engaging patients and clinicians alike. This community’s support ensures that any interested healthcare or emergency worker can easily join the registry.

Targeting the next phase of COVID-19: long-term vaccine safety

An advantage of real-world registries is their ability to evolve naturally as the pandemic progresses. For example, now that the U.S. Food and Drug Administration (FDA) has issued Emergency Use Authorization of COVID-19 vaccines, the HERO Registry is serving as a key tool in understanding the real-world experiences of healthcare workers taking vaccines.

In December, Pfizer funded the HERO-Together study, which is using the HERO Registry to follow healthcare workers for two years to assess their experiences after receiving one of the COVID-19 vaccines such as the Pfizer-BioNTech COVID-19 vaccine. Like previous studies that leveraged the HERO Registry, HERO-TOGETHER is making participation easy, allowing vaccinated health workers to quickly and securely provide information about their health and any unexpected medical care they have received.

What’s next for the HERO Registry?

The HERO Registry will continue to evolve in the coming years, and its community of engaged healthcare workers are certain to help answer more important questions about the short- and long-term impacts of COVID-19 within this essential community.

PCORnet® Gives Reason to Celebrate Connection and Community this Clinical Trials Day

Posted on by Jodi Snare

As COVID-19 pandemic continues to spread, keeping many across the world at home and disconnected from their communities, PCORnet®, the National Patient-Centered Clinical Research Network, is rallying to build coalitions and deliver hope. May 20 is Clinical Trials Day, a time to remember that clinical research has always been about bringing together people to build a healthier world—and in the era of COVID-19, patient engagement in research is more important than ever.

May 20 is commemorates the day James Lind performed the first-ever clinical trial in 1747, which was focused on scurvy. While it is a day to applaud Lind’s work in paving the way for future clinical trials, it is also fitting to celebrate the communities—clinicians, health systems, patients, and caregivers—who have propelled medical innovations forward since that time. Collaborative research has disarmed numerous diseases that were once a threat to global survival, but today are largely contained. Now, research is tackling the challenge of COVID-19, and PCORnet is enabling two opportunities for communities to come together to find answers.

  • The Healthcare Worker Exposure Response & Outcomes (HERO) Registry is a large, national clinical research community. It invites healthcare workers across America to share clinical and life experiences to understand the perspectives and problems they face on the COVID-19 pandemic front lines.
  • Those registered in the HERO Registry may have the opportunity to participate in HERO-HCQ, a randomized clinical trial of approximately 15,000 HERO Registry participants. It will test whether hydroxychloroquine can prevent COVID-19 infection in healthcare workers.

While there is still much unknown about the novel coronavirus, one thing is clear: clinical research is the best hope for answers. This Clinical Trials Day, celebrate the power of community, and if you are someone working in a healthcare setting that is caring for people with COVID-19, consider participating in the HERO registry by following the registry link above.

HERO Communications Toolkit

Posted on by Jodi Snare

This communications toolkit of tips, templates and materials for the HERO OneFlorida hub was compiled to increase awareness about the PCORnet® HERO Research Program and increase enrollment in the HERO Registry. Researchers can use toolkit emails, press releases, videos, flyers and social media content for their own programs as appropriate.

Access the communications toolkit.

PCORnet®-Enabled HERO Registry Launched, Unites Frontline Healthcare Workers to Fight COVID-19

Posted on by Jodi Snare

The Healthcare Worker Exposure Response & Outcomes (HERO) Registry launched today, marking the first major milestone in a rapid-response effort to answer important questions about protecting healthcare workers from COVID-19. The HERO program is funded by the Patient-Centered Outcomes Research Institute (PCORI) coordinated by the Duke Clinical Research Institute (DCRI) and enabled by PCORnet®, the National Patient-Centered Clinical Research Network.

“The HERO Registry will leverage PCORnet® resources and capacity to help us develop fast knowledge to keep healthcare workers safe and healthy, which ultimately will help protect us all,” said Adrian Hernandez, MD, MHS, principal investigator for the PCORnet Coordinating Center and the HERO program.

With the launch of the registry, the HERO program is seeking participation from hundreds of thousands of healthcare workers, including nurses, therapists, physicians, emergency responders, food service workers, environmental services workers, interpreters, and transporters—anyone who works in a setting where people receive health care. Participants will receive surveys and could be selected to participate in clinical trials. Healthcare workers can sign up via the registry and participate as much or as little as they like. The registry will follow a protocol developed by the DCRI and data guidelines to keep healthcare worker information secure.

“We’re calling on all healthcare workers to share their perspectives so that we can understand and provide answers to the problems they face in real time—and over time,” said Emily O’Brien, PhD, principal investigator of the HERO Registry and assistant professor in Duke University’s Department of Population Health Sciences.

The first rapid-cycle clinical trial using the registry, HERO-HCQ, is slated to start enrolling healthcare workers at the end of April, when sites within the PCORnet network will use the registry to identify about 15,000 interested healthcare workers to participate. The trial will randomize eligible participants to either one month of hydroxychloroquine or one month of placebo and will examine whether the drug is effective in preventing COVID-19 infection. Study results will be shared widely with the healthcare community.

Using PCORnet to conduct the study offers several major advantages over traditional trials. The network has a wealth of information to draw on in setting up the registry. It also has a well-established community of healthcare systems with experience collaborating on large clinical studies engaging patients and clinicians alike. This community will facilitate the oversight essential to ensure the study is carried out ethically and allow any interested healthcare or emergency worker to easily join the registry.

“Hospitals, health systems, and health plans that participate in PCORnet have worked in partnership for years and are well poised to deliver fast, reliable research infrastructure to study COVID-19,” said Chris Forrest, MD, PhD, co-chair of the HERO Registry and principal investigator of PEDSnet, one of multiple PCORnet Partner Networks participating in HERO-HCQ. “Infrastructure issues that might cause lag time for other studies are hurdles PCORnet has already crossed. PCORnet was developed for exactly this type of research challenge, and the network is ready to meet the moment.”