All posts by Patty McAdams

PCORI Guest Blog Explores How Alzheimer’s Network Puts Caregivers at Center

Around 15 million Americans provide unpaid care for people with Alzheimer’s and other dementias. Along with patients, these caregivers are at the center of PCORnet’s Patient-Powered Research Network (PPRN) known as the Alzheimer’s PPRN. In a PCORI guest blog, two investigators—a caregiver and the network project director—describe their experiences with Alzheimer’s and reasons they think their network can help patients and caregivers; read more here. If you are a patient or caregiver, please join the Alzheimer’s PPRN! For more information—whether you are a patient, a caregiver, or a researcher interested in collaborating—please join this June 28 webinar.

PCORnet Blog

PCORnet Spotlights its Expertise at 2016 Health Datapalooza

Date: June 13, 2016

Authors: Adrian Hernandez, MD, MHS, FAHA,  Keith Marsolo, PhD, and Russ Waitman, PhD

The Health Datapalooza conference is always an exciting event for us at PCORnet, the National Patient-Centered Clinical Research Network. It is the foremost gathering of people who are passionate about using data to improve patient outcomes and who are pioneering innovations that drive health policy and practice. Healthcare executives, researchers, patient advocates, and government agency representatives attended this year’s conference in May in Washington, DC. U.S. In addition, Vice President Joe Biden gave a keynote address about data sharing and transparency.

PCORnet had a fantastic experience at this year’s Datapalooza, as it was an opportunity for us to showcase how we are harnessing the power of data and unique partnerships to conduct important health research faster, more efficiently, and at lower cost than was previously possible.

PCORnet collaborators Adrian Hernandez, MD, MHS, FAHA, Keith Marsolo, PhD, and Russ Waitman, PhD, spoke at Health Datapalooza. Hernandez gave an overview of PCORnet. Marsolo presented PCORnet’s model for sharing data. Waitman contributed to a session describing how variability in clinical information across electronic data sources hinders the exchange, collection, and analysis of health data.

We asked them how PCORnet’s approach meshes with Datapalooza’s themes.

Continue reading PCORnet Spotlights its Expertise at 2016 Health Datapalooza

PCORnet Announces Enrollment of First Participant in ADAPTABLE Aspirin Study

Patient-centered comparative effectiveness trial uses electronic health records to recruit participants.

PCORnet, the National Patient-Centered Clinical Research Network

www.pcornet.org

FOR IMMEDIATE RELEASE on Wednesday, April 27, 2016

Washington, D.C. – PCORnet, the National Patient-Centered Clinical Research Network today announced enrollment of the first patient in its ADAPTABLE (Aspirin Dosing: A Patient-centric Trial Assessing Benefits and Long-Term Effectiveness) study, a three-year pragmatic clinical trial that will compare the effectiveness of two different daily doses of aspirin widely used to prevent heart attacks and strokes in individuals living with heart disease. Pragmatic trials are designed to reflect “real-world” medical care by recruiting broad populations of patients, embedding the trial into the usual healthcare setting, and leveraging data from health systems to produce results that can be readily used to improve patient care.

“PCORnet is shifting the research paradigm through studies like ADAPTABLE by introducing a new genre of patient-centered research where patients are engaged to improve the science of clinical trial design,” said Adrian F. Hernandez, MD, MHS, director of outcomes and health services research at the Duke Clinical Research Institute (DCRI) and PCORnet’s Coordinating Center Co-Principal Investigator.

Using electronic health records (EHRs) and web-based technology, participants will self-consent, self-randomize and report data directly through an online portal. In addition, with participants’ consent, electronic health information captured during routine care will be used to identify events that will provide ADAPTABLE researchers with additional health outcomes data to inform better decision-making. Watch Dr. Hernandez’s video explaining how PCORnet and ADAPTABLE are re-thinking how clinical trials are conducted.

ADAPTABLE is funded through a research award totaling up to $18 million from the Patient-Centered Outcomes Research Institute (PCORI). DCRI is the Coordinating Center for this first demonstration study of PCORnet, an innovative initiative of PCORI involving 33 individual networks working together to make it faster, easier, and less costly to conduct clinical research by harnessing the power of large amounts of health data and patient partnerships. The study plans to enroll 20,000 patients with heart disease identified from EHRs from seven of PCORnet’s Clinical Data Research Networks (CDRNs) and 30 different health systems. The Health eHeart Alliance Patient-Powered Research Network (PPRN) supports the Adaptors, a team of people with coronary heart disease who helped design the protocol, consent form, portal content, and study materials. Together the Adaptors and Health eHeart Alliance have developed patient-centered processes to facilitate engagement.

In ADAPTABLE, the role of the patient has shifted from that of a participant to partner. “Adaptors provide more than input, they are part of the research team and members of the executive and the steering committees. Two patients who are not Adaptors will sit on the data safety monitoring board. We have not seen this type of participation in traditional clinical research. We are learning a great deal from our patient partners and along the way we are transforming how clinical research is performed,” said Lisa G Berdan, Director, DCRI Global Cardiovascular Outcomes Trials.

Jacqueline Alikhaani, an Adaptor, offers this perspective, a view that is shared by her fellow Adaptors, “What we are doing in ADAPTABLE is landmark work. For the first time ever we are looking to improve patient-centered care with patients at the table, not just on the table. Research is necessary to determine if and how changes can best be made. This is why I volunteered to help design and implement the ADAPTABLE aspirin study.”

Heart disease is the leading cause of death for both men and women. About 610,000 people die of heart disease in the United States every year. It accounts for one in every four deaths and is a disease that places enormous burdens not only on patients and their families but on the nation and its healthcare system as a whole.

ADAPTABLE Steering Committee Co- Chairperson, Russell Rothman, MD, MPP, Principal Investigator of the Mid-South CDRN said, “Typically when a patient is diagnosed with heart disease they are prescribed baby or low-dose aspirin (81 mg) or regular strength (325mg). However, we actually don’t know the optimal dose of aspirin for balancing benefits in preventing a future heart attack or stroke against its risk of bleeding. Results of the ADAPTABLE study will provide doctors with a better understanding of which dose of aspirin is best for which patient so that we can improve healthcare delivery and patient outcomes.” Watch Dr. Rothman’s video to learn about the significance of ADAPTABLE and novel aspects of its design as a pragmatic clinical trial.

ADAPTABLE will help patients and health care providers determine the right dose to use in coronary artery disease. In addition, it will provide a new framework for how clinical trials can be delivered. For more information, visit www.theaspirinstudy.org or check out the patient portal at www.adaptablepatient.com.

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About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct comparative clinical effectiveness research efficiently by creating a large, highly representative network for conducting clinical outcomes research that directly involves patients in the development and execution of the research. More information is available at www.pcornet.org.

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

Media Contact

Mark Slagle

(919) 668-8031

[email protected]

PCORnet Coordinating Center

[email protected]

How Parents, Patients, and Researchers Help Define the Future of Autism Research

In 2015, the Interactive Autism Network (IAN) became one of the Patient Powered Research Networks (PPRNs) that make up PCORnet. Established by the Kennedy Krieger Institute in 2006 to foster communication and trust between the autism community and researchers, IAN aims to improve understanding of the causes of, and discover treatments for, this complicated disorder.

In this PCORI  blog read how parents, patients, and researchers are championing autism research. You can also watch this video and hear from Kiely Law, Principal Investigator of IAN, describe how together, IAN and PCORnet, are changing the way autism research is done.

PCORnet Blog

PCORnet’s Public Workshop on Building Trustworthiness: It’s Time to Walk the Talk

BrayPatrick-Lake_008-CropDate: April 12, 2016

Author: Bray Patrick-Lake, MFS, Director of Patient Engagement, Duke Clinical and Translational Science Award (CTSA)

Ms. Patrick-Lake supports efforts to actively engage research participant partners in Duke University’s research programs.  She is also part of the PCORnet Coordinating Center where she develops and supports patient engagement efforts. Read more about Bray Patrick-Lake.


PCORnet, the National Patient-Centered Clinical Research Network, has “patient-centered” prominently in its name and aims to become a role model of patient-driven research. For PCORnet to be true to its name and ambitious goal, however, will take far more than a compelling title and technical expertise. It will take a shift in the culture of research — from a traditional investigator-driven model where patients rarely have a role other than as study subjects to one where research interests and activities originate in the needs of the communities and people that health research is designed to serve in the first place.

PCORnet and the Patient-Centered Outcomes Research Institute (PCORI), which funded PCORnet’s creation and development, certainly have moved the needle on including the patient voice in the design, conduct, governance, and dissemination of research. However, many challenges remain. So if we are to optimize research and drive the rapid-cycle learning and uptake of new findings that we involved in PCORnet so desire in research and health care, PCORnet must push even harder to advance a model where building trust and sharing power with the people all health professionals serve is built into the very fabric of our work.

Scores of people — patients, researchers, and many other stakeholders — committed to such a paradigm shift gathered in Washington, DC, on March 28 and 29 to work on advancing that agenda through the Building Trustworthiness in PCORnet meeting. Here are some key takeaways from that event.

Continue reading PCORnet’s Public Workshop on Building Trustworthiness: It’s Time to Walk the Talk

PCORI Board Approves $12.5 Million for PCORnet Patient-Powered 
Research Network Demonstration Projects

For Immediate Release
Patient-Centered Outcomes Research Institute

Contact: Christine Stencel, Associate Director of Media Relations (202-570-9275 or [email protected])

PCORI Board Approves $12.5 Million for PCORnet Patient-Powered 
Research Network Demonstration Projects

Also Authorizes $22 Million to Compare Treatment Options for Chronic Low Back Pain

WASHINGTON, DC (Mar. 22, 2016) — The Patient-Centered Outcomes Research Institute (PCORI) Board of Governors today approved $12.5 million for five Patient-Powered Research Network (PPRN) demonstration projects.

Additionally, the Board authorized providing up to $22 million to study ways to improve treatment of chronic low back pain, a leading cause of disability and one of the most frequent reasons adults seek medical care. Continue reading PCORI Board Approves $12.5 Million for PCORnet Patient-Powered 
Research Network Demonstration Projects

Parent Champion Perspective on Engagement in Research

Douglas Lunsford, a champion of obesity research, describes what led him to become an investigator for the PCORnet Antibiotic Use in Infants and Obesity Study in a PCORI blog.  In an accompanying video,  Mr. Lunsford’s states, “The more we as people interact with the medical community and the more they interact with us, it eliminates a lot of the intimidation and really leads to better care and treatment for everyone.”

PCORnet Blog

People-Powered Research Begins with Trust

Date: March 17, 2016

Author: Sharon Terry, MA, Co-Principal Investigator, PCORnet Coordinating Center and Principal Investigator, Community-Engaged Network for All (CENA)

People-powered research is what’s needed to drive changes in research and health care. If people engage in health research the same way that they engage with other industries, with the same passion that they make decisions about books, music, and cars, then people themselves will power research forward.

Continue reading People-Powered Research Begins with Trust

Advancing Research by Giving Patients Greater Access to Their Health Data

Read more about Joe Selby and Sharon Terry’s participation in the Precision Medicine Initiative or PMI in a recent PCORI blog. PMI seeks to gather a range of health information—including genetic data, bio-specimens, clinical records, and information reported by patients themselves—from more than 1 million people. Its goal is to create a research resource that can help develop treatments tailored to individual patients.

PCORnet believes that research must be informed by the everyday experiences of ordinary patients, so it addresses the questions that matter most to patients and the results are useful and widely applicable. As chair of the PCORnet Engagement Committee, Sharon is leading the PCORnet Building Trustworthiness in PCORnet workshop, March 28-29 in Washington, DC. This is an opportunity that will bring together patients, caregivers, clinicians, industry, advocacy groups, the research community, and the broader public at large to begin a critical dialogue about ethics, trust, and engagement, not just for PCORnet, but for clinical research overall. Watch Sharon’s video to learn more about PCORnet’s trustworthiness meeting.

PCORI Announces PCORnet Partner Networks’ Pledge to Facilitate Patients’ Access to Their EHR Data

For Immediate Release Patient-Centered Outcomes Research Institute

Contact: Christine Stencel, Associate Director of Media Relations (202-570-9275 or [email protected])

PCORI Announces PCORnet Partner Networks’ Pledge to Facilitate Patients’ Access to Their EHR Data

Pledge Announced at White House Precision Medicine Initiative Summit 

WASHINGTON, DC (Feb. 25, 2015) — Today at the Precision Medicine Initiative Summit at the White House, Joe Selby, MD, MPH, Executive Director of the Patient-Centered Outcomes Research Institute (PCORI), announced an initiative to enable individuals to access data in their electronic health records (EHRs) and share it for research that could improve care for their conditions.

The initiative involves a pledge by 20 Patient-Powered Research Networks (PPRNs) to help their participating patients more readily obtain information from their EHRs. These PPRNs are part of a research resource called PCORnet, a PCORI-funded initiative to build a national patient-centered clinical research network.

The PPRNs will encourage their participant members to share their health information with researchers to support studies that have been identified as highly relevant and useful by network members. The PPRNs are uniquely positioned to facilitate the flow of health data for research and healthcare improvement because they are built to focus specifically on the needs of their participants.

The PPRNs will help participants to retrieve their own EHR data through existing participant portals and offer them an immediate option to make these data available for research. They are using and evaluating multiple ways to help people acquire their EHR data with guidance and input from patients and other stakeholders. For example, nine PPRNs are gathering data electronically either directly from healthcare providers or through intermediaries, including several PCORnet Clinical Data Research Networks (CDRNs).

Their efforts will build toward a future in which an interface for exchanging EHR data based on Fast Healthcare Interoperability Resources (FHIR) will be widely available.

Information shared by patients is crucial for being able to meet PCORI’s and PCORnet’s goal of enhancing the quality, efficiency, and usefulness of clinical research for patients and other end users of study results, Selby noted.

“Information that reflects the everyday, lived experiences of ordinary patients is vital for health research to ensure that it focuses on the questions that matter most to patients and the results are directly applicable and useful to a wide range of patients,” Selby said.

“The goal of the PCORnet Patient-Powered Research Networks and of PCORI is to ultimately empower people to ask for their health data from healthcare providers and receive it in the easiest and most useful way,” said Sharon Terry, MA, President and CEO of Genetic Alliance, which leads the Community Engaged Network for All (CENA) PPRN and serves in a leadership role in the PCORnet Coordinating Center. Terry also is a member of the Precision Medicine Initiative Cohort Program Advisory Panel.

“This EHR data, combined with information from patient self-reports and other sources, will be critical in understanding patient-outcomes for millions of Americans,” Terry added.

The 20 PPRNs along with 13 Clinical Data Research Networks based in health systems together comprise PCORnet, the National Patient-Centered Clinical Research Network. PCORnet is an innovative PCORI initiative designed to make it faster, easier, and less costly to conduct clinical research than is now possible by harnessing the power of large amounts of health data with direct guidance and input from patients.

PCORnet is building the means to securely access information on the health experiences of tens of millions of patients and hundreds of healthcare organizations for research purposes, tapping resources including EHRs, insurance claims, outcomes reported by patients themselves, and other data. PCORnet is engaging thousands of patients and care providers, and hundreds of health systems in collaborative partnerships to determine how to use the national network’s data resources and access to patient populations. Patients are centrally involved in PCORnet’s governance. In the process, PCORnet is transforming the culture of clinical research from one directed by researchers to one driven by the needs of patients and those who care for them.

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct comparative clinical effectiveness research efficiently by creating a large, highly representative network for conducting clinical outcomes research that directly involves patients in the development and execution of the research. More information is available at www.pcornet.org.