All posts by meagan.daly@duke.edu

PCORnet Blog

The Power of Collaboration: A Glimpse Into PCORnet’s Commitment to Stakeholder Engagement

PCORnet, the National Patient-Centered Clinical Research Network, an initiative of the Patient-Centered Outcomes Research Institute (PCORI), has put stakeholder engagement, particularly research participants, at the heart of its infrastructure. Operating as an extension of PCORI’s mission to bring patient voices to the forefront of research, PCORnet seeks to integrate a collaborative spirit across every aspect of the Network. This month we are examining how PCORnet is putting its people-centered values into action—from its Engagement Committee to its research participants.

PCORnet’s Engagement Committee: Powered by Partner Networks
PCORnet created the Engagement Committee as one of the guiding bodies for meaningful work in transforming the culture of clinical research. The Engagement Committee, comprised of patients and other representatives of PCORnet’s various stakeholder communities, works to seamlessly integrate engagement across the Network by identifying and furthering best practices, incentives, and solutions.

“The Engagement Committee
helps to define what meaningful inclusion of people in clinical research means, and my role allows me to help key stakeholders understand new, game-changing ways to engage partners and research participants in every step of the research process.”

Sharon Terry, MA
Chair, PCORnet Engagement Committee
Co-Principal Investigator, PCORnet Coordinating Center

“Over the course of my years of leading people-driven research, I have found that engagement is key to addressing the needs of people—but to ensure success, engagement must be supported with the right resources, including the support of leadership,” said Sharon Terry, Committee Chair.

“The Engagement Committee helps to define what meaningful inclusion of people in clinical research means, and my role allows me to help key stakeholders understand new, game-changing ways to engage partners and research participants in every step of the research process.”

In this video, Terry describes more detail about the history and goals of this committee, and you can watch her speak at TEDMED about her moving journey to take research related to her children’s rare disease into her own hands.

Representatives, including research participants, clinicians, and other experts from PCORnet’s partner networks, serve on the Engagement Committee to deliberate and define a variety of methods and tools using insights from their communities. For example, Rebekah Angove serves on the Engagement Committee as the Director of Engagement for the Research Action for Health Network (REACHnet) CDRN. Her involvement provides REACHnet a voice in PCORnet research, bridging the gap between clinicians, researchers, and patients.

As Angove explains in this video, being a part of the Engagement Committee empowers partner networks to take engagement a step beyond simple study participation; it is a means to cultivate rich relationships with researchers and ensure research participants are actively involved in important decision-making throughout the research process.

People at the Heart of Our Network
The Engagement Committee is essential, but this would, of course, be irrelevant without the heart of research participant engagement—the people themselves. Bill Larsen, an Adaptor for the ADAPTABLE 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) believes that it is up to people like him to take initiative and really engage at the level of the research participant. Adaptors are research participant representatives who work alongside researchers in all aspects of the ADAPTABLE study, including designing the protocol and disseminating study updates. Larsen also participates in the OneFlorida-supported Citizen Scientist initiative. Citizen Scientists like Larsen are local community members who partner with scientists to conduct scientific research and answer real-world questions.

Bill Larsen Citizen Scientist, OneFlorida Clinical Data Research Network & Patient Partner, ADAPTABLE Study

“It has become startlingly clear to me since my involvement as a Citizen Scientist and Adaptor that the role of the ordinary citizen in the research process is vastly underappreciated. From the scientific side, the researcher seems far too focused on the ‘science.’ On the other side, patients do not understand how vital their role is as a participant in research,” said Larsen. “Without greater patient participation, research simply cannot translate solutions into practice at the pace we need.”

Larsen has spent years integrating himself into research as a Citizen Scientist, even participating in a number of “design” studio reviews where Citizen Scientists can provide input toward research proposals.

The result of all these engagement efforts in research is significant: more insights that are meaningful to communities; answers to questions that have long been ignored by the medical researchers; and an empowered cadre of research participants, patients, and caregivers who finally have a voice in their own health outcomes.

“PCORI and PCORnet are setting the standard for a new era of clinical research that is driven by and for the needs of people,” said Terry. “I feel fortunate to be part of the movement that is bringing together key stakeholders in the name of better, more meaningful research, and I hope that we can join forces with all stakeholders to ignite the people-centered revolution.”


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 clinical research by creating a large, highly representative network that directly involves patients in the development and execution of 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.

People-Centered Research Foundation Names Kathy Hudson Executive Director

The People-Centered Research Foundation (PCRF) announced today that Kathy L. Hudson, PhD, has joined the organization as executive director. Hudson most recently served as deputy director for Science, Outreach, and Policy at the National Institutes of Health (NIH). At the PCRF, she joins a team of national leaders in clinical research who established the nonprofit organization to accelerate people-driven research. Visit the PCRF Website to learn more.


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 clinical research by creating a large, highly representative network that directly involves patients in the development and execution of 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.

PCORnet Blog

Why Engage Patients at “Your Weight Matters”?

Author: Kimberly Holmquist, MPH, Research Project Manager for Kaiser Permanente Southern California (KPSC) Research & Evaluation, the Lead Site for Kaiser Permanente & Strategic Partners Patient Outcomes Research To Advance Learning (PORTAL) Network and Lead Site for PCORnet secondary aim for bariatric studies.

Kimberly started her career in medical research with the Centers for Disease Control and Prevention (CDC) in 1990 as a Disease Intervention Specialist.  She worked with the CDC, National Immunization Program as a Project Manager for Special Projects.  She joined KPSC in 2002 where she worked as a Project Manager for the SEARCH for Diabetes in Youth Study.  She started working on bariatric studies in 2017 because she is also a bariatric surgery patient so these studies are important to her on a personal and professional level.  


This week’s Your Weight Matters National Convention in New Orleans, an event organized by the Obesity Action Coalition, is a unique event that convenes patients looking for information on bariatric surgery as well as physicians, bariatric surgeons and policy makers all in one place.

This event is the perfect opportunity to highlight the Patient Centered Outcomes Research Network Bariatric Study (PCORnet Bariatric Study), a PCORnet Demonstration Study that compares the health benefits of three common bariatric procedures after the surgery. In addition to analyzing changes in weight, rate of remission, rate of diabetes relapse or improvements, and risk of major adverse health events, this study is also exploring patient perspectives on their key choices regarding bariatric surgery, such as whether to have surgery, which procedure is right for them, and receipt of follow-up care.

To that end, our researchers are hosting a Focus Group at Your Weight Matters where we hope to engage with patients to help better understand how patients obtain information on weight loss surgery, what information is important in determining a surgical procedure, and what they want to know from others who have had surgery. We will also disseminate information on valuable resources for support before and after surgery. The PCORnet Bariatric Study is looking to hear from individuals who have had weight-loss surgery, those who might be considering weight-loss surgery, or anyone who might want to learn more about weight-loss surgery. Healthcare professionals, consumers, patients, policy makers, and other stakeholders are also welcome to attend.

This focus group will help reach the main aims of the study which are to elicit patient preferences around the risks and benefits regarding the choice of whether to undergo bariatric surgery; which bariatric procedure to use; and the optimal follow-up care after bariatric surgery. We are conducting a series of focus groups among two patient populations: adults and children with severe obesity that are eligible for but have not had bariatric surgery, and those patients who have had bariatric surgery. We are working with PCORnet’s Clinical Data Research Networks (CDRNs) and Patient-Powered Research Networks (PPRNs) across the country to identify patients who may be interested in participating. The findings from this qualitative approach will help us better understand why patients choose to have surgery (or not), how they decide which procedure to undergo, as well as how their post-operative experiences can be improved once they have chosen surgery. This approach will also assist us in identifying important measurable differences between patients who choose different bariatric procedures that can then be accounted for in our analyses and help us discern which study outcomes are most important to patients with severe obesity.

We believe the information gathered from these discussions will assist the bariatric medical community in adapting their methods to better serve patients with specific needs.

The population in attendance at the Your Weight Matters Convention is the exact audience to help us with our research because it includes patients looking for information on bariatric surgery, patients who have had surgery already, physicians, bariatric surgeons and policy makers all in one place.  We are hoping to connect with these participants and link them into future research as stakeholders.


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 clinical research by creating a large, highly representative network that directly involves patients in the development and execution of 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.

PCORnet Blog

A Monumental Step Toward Understanding and Diagnosing Prosopagnosia (Face Blindness)

Author: Christina Pressl, MD, Clinical Scholar and Investigator for New York City Clinical Data Research Network (NYC-CDRN), one of 13 Clinical Data Research Networks (CDRNs) funded by PCORI.

Christina received her MD from the Medical University of Graz, Austria in 2009. She then spent the following three years of residency in Radiology at the General Hospital, Medical University, Vienna before moving to New York City, where she joined Memorial Sloan Kettering Cancer Center as a visiting investigator. In July 2014, she joined the Masters Program in Clinical Translational Sciences at the Rockefeller University where she now studies the neuronal mechanisms of face perception as an instructor in clinical investigations in Dr. Winrich Freiwald’s Laboratory of Neutral Systems.


Imagine a life where you are unable to recognize your friends; unable to spot your own child within a group of children; unable to recognize your partner; or even unable to recognize your own face in the mirror. For those who suffer from prosopagnosia—or face blindness, a condition that causes great difficulty in recognizing, memorizing, and perceiving people’s faces—this concept is a very real, often debilitating way of life.

With the support of the Patient-Centered Outcomes Research Institute (PCORI) and its New York City Clinical Data Research Network (NYC-CDRN), researchers and clinical investigators like myself are opening new possibilities to study this rare and little-known condition. By harnessing rich data sets, we are able to shed light on aspects of this condition that may have previously been impossible to study.

Functioning face perception is a skill we use in our everyday life, so it is not surprising that face blindness can be socially devastating. And yet, there is still so much we do not know about the condition. From what has been previously studied, we do know that it can be present either in a developmental or an acquired form through incidents that compromise brain function, such as trauma or stroke. However, the information gaps around face blindness remain substantial. We do not know what genes may be involved and are not certain if the condition can be inherited. Researchers are still not able to pinpoint the exact number of individuals affected by either developmental or acquired face blindness, although it is estimated that up to two percent of the general population suffer, to some degree, from face blindness.

I wanted to find answers to all these questions and help those suffering from prosopagnosia, so for the last three years, I have studied face perception in Dr. Winrich Freiwald’s Laboratory of Neural Systems at the Rockefeller University. It was here that I met Dr. Jonathan Tobin, who is the Community Engagement Core Co-Director of the Rockefeller University Center for Clinical and Translational Science (CCTS). He introduced me to PCORI, and after learning of its wonderful and relevant mission, I saw an opportunity to build the capacity to identify rare disorders like prosopagnosia that may be under-diagnosed in practice.

Through this connection, a study was created, and a research team set out to study the epidemiological characteristics of prosopagnosia using the NYC-CDRN.

Funded by PCORI, the NYC-CDRN’s mission is to archive a large number of electronic health records from 22 New York City based healthcare centers and organize those records into a structured, de-identified database, making the data accessible for research. Researchers can then work with a central institutional review board to establish protocols that will allow us to utilize its database—which, to date, contains de-identified, longitudinal electronic health records from approximately eight million unique patients—to shed light on almost any condition of interest and answer questions from entirely new perspectives.

With millions of health records at our fingertips, the investigational possibilities seemed limitless, but our team decided to answer the most pressing question first: how many face blind individuals would we find?

To answer this, we designed a computable phenotype (or set of clinical features that can be determined solely from the data in electronic health records) that contains a list of International Classification of Diseases (ICD) diagnostic codes encoding not only for the condition of interest—prosopagnosia—but also for conditions such as head trauma or stroke, which have been associated with face blindness.

Christina Pressl presents poster at the ACTS Conference, Washington DC.

The main aim of this study is to provide new insights into the epidemiological characteristics of prosopagnosia and to create a tool that would enable us to report frequencies of potentially undiagnosed cases within the population. Our work is off to a promising start; our preliminary findings suggest that there may be a vast underdiagnosis of prosopagnosic cases in the New York City area, especially within the elevated population at risk.

This endeavor is unique; it enables us to provide reports that are derived from the largest sample of prosopagnosic individuals ever investigated, and it is our hope that we will be able to deliver new knowledge to the community to ultimately help individuals who suffer from prosopagnosia, empower them through this knowledge, and provide them with ways to connect to other face blind individuals.

Read more about prosopagnosia on my website or view a town hall meeting on “Living with Face Blindness” held at Rockefeller University on December 13th, 2016.

This research was supported by grant UL1 TR001866, UL1TR000043 from the National Center for Advancing Translational Sciences (NCATS), National Institutes of Health(NIH) Clinical and Translational Science Award(CTSA) program.


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 clinical research by creating a large, highly representative network that directly involves patients in the development and execution of 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

NESTcc Selects PCORnet Leaders for Inaugural Governing Committee

Several leaders from PCORnet, the National Patient-Centered Clinical Research Network, PCORI and the People-Centered Research Foundation (PCRF) have been selected to serve on the inaugural Governing Committee for the National Evaluation System for health Technology Coordinating Center (NESTcc), including:

Read the full announcement.

 

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 clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.