All posts by meagan.daly@duke.edu

PCORI Board of Governors Approves $27 Million for Projects Using PCORnet

As PCORnet, the National Patient-Centered Clinical Research Network, continues to expand and improve, more research projects are incorporating PCORnet resources and infrastructure. The Patient-Centered Outcomes Research Institute (PCORI) Board of Governors recently approved over $27 million to support four patient-centered research studies that are using PCORnet:

  • A Non-Inferiority Comparative Effectiveness Trial of Physician-Led vs. Nurse-Led Home-Based Palliative Care in Older Adults with Advanced Illness and Their Family Caregivers: This project will compare a conventional physician-led home-based palliative care (HBPC) model that includes routine physician home visits to a contemporary more efficient nurse-led HBPC model that leverages experience and training of nurses and remote physician supervision to facilitate greater access to palliative care services. This study will take place in sites across the Partners Patient Outcomes Research to Advance Learning (PORTAL) Clinical Data Research Network (CDRN).

     

  • Population-Based Comparison of Evidence-Based, Patient-Centered Advance Care Planning Interventions on Advance Directive Completion, Goal Concordant Care and Caregiver Outcomes for Patients with Advanced Illness: This project will compare three practical approaches to advance care planning (ACP) for patients with cancer, heart, and lung disease at 27 clinics at three University of California (UC) sites (UCLA, UCSF, and UCI) that are part of the pSCANNER CDRN. Outcomes for ACP and treatment will be collected for all patients with advanced illness in these participating clinics.

     

  • Provider-Targeted Behavioral Interventions to Prevent Unsafe Opioid Prescribing for Acute Non-Cancer Pain in Primary Care: This project, occurring in three health systems that participate in the PaTH CDRN, will look at the comparative effectiveness of different health system strategies to prevent unsafe opioid prescribing while ensuring access to non-opioid methods for pain management. The project team will assess whether behavioral science-based interventions can “nudge” providers toward more evidence-based care for patients with acute non-cancer pain. The multidisciplinary research team will work closely with a stakeholder advisory committee comprised of patients, patient advocates, primary care providers, pain medicine specialists, payers, health system executives, experts in behavioral science, and regional and national organizations.

     

  • Statistical Methods and Designs for Addressing Correlated Errors in Outcomes and Covariates in Studies Using Electronic Health Records Data: This project will develop statistical methods that allow researchers to obtain accurate estimates using data that have been only partially validated and to better understand which patient records should be validated to optimize resources. It will then apply the methods to a real-world study using EHR data from the Mid-South CDRN that is identifying factors that affect risk of early childhood obesity.

     

  • Comparative Effectiveness of an Exercise Intervention Delivered via Telerehabilitation and Conventional Mode of Delivery: This project will aim to address exercise challenges for those with multiple sclerosis (MS). For a variety of reasons, many people with MS do not exercise, which can lead to increased health challenges.  In partnership with PCORnet’s iConquer, the study will compare an individual  exercise program followed at home or at an exercise facility by people with MS. Based on findings, tools will be developed to help educate the MS community so patients for whom it is difficult to go to an exercise facility regularly can have access to the program at home.

     

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

Save the Date: PCORI Annual Meeting Features PCORnet Workshop

The Patient-Centered Outcomes Research Institute’s (PCORI) Annual Meeting, taking place October 31st– November 2nd, will showcase the National Patient-Centered Clinical Research Network (PCORnet) in a special workshop: “PCORnet in Action: Utilizing PCORnet for Research.”  This workshop, occurring Thursday, Nov. 2nd, will focus on how to conduct research using PCORnet resources and infrastructure. It will include an introduction to PCORnet and three panel discussions. The first panel will discuss a range of research studies taking place throughout PCORnet, highlighting the value added by using this national research infrastructure. The second panel will focus on research, data, and engagement resources available through PCORnet. Resources addressed will include Collaborative Research Groups, the PCORnet Front Door, the PCORnet Common Data Model, the PCORnet Engagement Assessment Tool, and the PCORnet Commons.  Finally, the last panel will present multiple use cases to describe the process of initiating projects in PCORnet.

As you make your travel plans to attend the PCORI Annual Meeting, be sure to check out the agenda and make time to attend this important PCORnet workshop. If you can’t make the event in person, follow us on Twitter for live tweets during the meeting that will keep you up-to-date on highlights and available webcasts.

 

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

PRIDEnet to Support Engagement of LGBTQ Community in NIH’s ‘All of Us’ Research Program

The San Francisco General Hospital Foundation (SFGHF) has been awarded $542,000 by the National Institutes of Health to engage sexual and gender minorities across the country in the All of Us Research Program, in part through outreach to PRIDEnet, a PCORnet Partner Network. Formerly known as the Precision Medicine Initiative Cohort Program, the All of Us Research Program is an ambitious effort to gather data over time from one million or more people living in the United States to ultimately accelerate research and improve health.

“This is a historic time for sexual and gender minorities in which these communities are beginning to be accounted for and empowered as stakeholders in the clinical research process from the very outset,” said Mitchell Lunn, MD, MAS, a principal investigator for the NIH award and of PRIDEnet. “In alignment with the patient-centered vision of PCORnet and the Patient-Centered Outcomes Research Institute (PCORI), the All of Us Research Program’s efforts will cultivate long-term, meaningful relationships, which will help us shed light on relevant health disparities within the entire nation, including these minority groups.”

As part of this effort, Lunn and his entire team, including University of California, San Francisco professor and co-principal investigator Kirsten Bibbins-Domingo, PhD, MD, MAS, will serve as All of Us Engagement Partners. In this capacity, they will engage the LGBTQ (Lesbian, Gay, Bisexual, Transgender, Queer and Questioning) community to ensure all study materials are appropriate for this specific group. The team will also provide input on enrollment materials and research plans, develop customized educational and recruitment/retention programs, and study best practices in the dissemination of research results to support retention.

The All of Us Research Program intends to open for national enrollment in late 2017 or early 2018. SFGHF’s award will last three years, while the entire program will continue indefinitely.

 

*Precision Medicine Initiative, PMI, All of Us, the All of Us logo, and The Future of Health Begins with You are service marks of the U.S. Department of Health and Human Services.

 

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.

Diversity, Communication and Trust: Three PPRNs Share the Recipe for Effective Engagement in Rare Disease Research

Imagine you are a patient who has just been diagnosed with primary Nephrotic Syndrome. Your doctor explains to you that this is a rare kidney disorder and then hits you with the gut punch: there is no known cause, no cure, and no FDA-approved medication for treatment. We often think of rare conditions as something that will never impact us, but the truth is that rare diseases collectively are not so rare. In fact, they impact nearly 25 million Americans according to the National Institutes of Health. Patients and caregivers impacted by rare diseases are frustrated by the lack of knowledge around these conditions and, as a result, are often more motivated than most to participate in efforts to drive research forward. It’s a rich opportunity for the research community; but how do we channel that opportunity to drive long-term engagement in clinical research?

PCORnet, the National Patient-Centered Clinical Research Network, a PCORI initiative, has made answering this question a priority. Rare diseases are well represented in PCORnet’s Partner Networks; in fact, several of these networks have a singular focus on one or more such illnesses. To fast track the sharing of lessons learned across the Network, these networks have joined forces to create the Engagement & Experience Research Group, an innovative collaborative focused on advancing the science of multi-stakeholder engagement and enhancing the patient experience in clinical care and research. The group is comprised of five PCORnet Partner Networks: ADVANCE CDRN, CAPriCORN CDRN, DuchenneConnect PPRN, Interactive Autism Network PPRN, and Phelan-McDermid Syndrome Data Network PPRN. Unsurprisingly, some common themes quickly emerged as success indicators for engaging the rare disease community: trust, diversity and communication.

Building Trust Between Communities

Those involved with Phelan-McDermid Syndrome Data Network (PMS_DN), a network dedicated to advancing the knowledge, care, and treatment of a rare pediatric disease known as Phelan-McDermid Syndrome (PMS), cite trust as the fire that fuels all effective engagement, especially for their specific patient community in which children are the primary participants.

PCORnet and Rare Disease

Learn more about how PCORnet can benefit
rare disease research.

“We have found engagement to be most effective when we leverage communities of fellow patients and caregivers to drive awareness of the research we conduct. Parents encouraging parents to engage is more effective than researchers or clinicians trying to motivate them,” said Megan O’Boyle, principal investigator for PMS_DN. “Trust is already established when you are talking to a mom or dad going through the same thing you are. When caregivers come to us and tell us that they had a positive research experience, we encourage them to share that feeling with others families.” O’Boyle also stressed what she refers to as the golden rule of all research, rare disease or otherwise: return the data.

“Patients and caregivers in rare disease communities are seldom motivated by money,” she said. “They are motivated by the need for answers. The relationship with the research community has to work both ways: if families give us their time and effort, it is incumbent on us to give them the results of the studies they have participated in.”

Putting Diversity Into Action

One of PCORnet’s youngest PPRNs and former member of the Engagement & Experience Research Group, NephCure Kidney Network (NKN), is on a quest to improve insights into the very condition mentioned above: primary Nephrotic Syndrome, a rare disease that causes the body to excrete too much protein into the urine, leading to swelling in the body and potential kidney failure. At NKN, one key to unlocking answers within rare disease communities lies in finding the right balance of diversity—and then putting that mix of diversity into action to make sure all patient participants feel empowered.

“We have found that effective engagement doesn’t just mean collecting any patient feedback—it means collecting the right patient feedback,” said Elizabeth Cope, former principal investigator for NKN and current co-investigator for ADVANCE. “For example, a patient advisory group is a great start to giving patients a voice in the research process, but we have to keep in mind that patient advisory groups only appeal to certain types of people with the interest and ability to offer a deep commitment to projects; the collective experience of this group may not be generalizable to all patients. Finding the right balance of diversity is essential for building a resource that meets the needs of its patient community at-large.”

NKN operationalized this one-size-does-not-fit-all approach to engagement by offering a buffet of study engagement options for patients to choose from. While deeper, time-heavy options were presented, such as participation in network governance, Cope and her colleagues also offered “single-touch” opportunities to increase the diversity of participant input. Additionally, NKN provides education and motivational outreach content to patients, which allows participants to see that their role in advancing rare disease research matters, even at the single-touch level.

Focusing on Effective Communication

Like NKN, DuchenneConnect (DCN), a PCORnet PPRN created to support families and advance research toward a cure to a set of rare neuromuscular disorders known as Duchenne and Becker muscular dystrophy (DBMD), believes patient empowerment and bi-directional communication between the patient community and the research community is essential. DCN uses various communication tools and tactics to open new possibilities within rare disease research and put patients in the driver’s seat.

 “Many roadblocks in clinical research, particularly rare disease research, can be attributed to knowledge gaps. We focus on those gaps, including helping basic researchers and sponsors understand unmet needs; informing sponsors and regulators about meaningful benefits and acceptable risks and burdens; and educating people with Duchenne and their families around what it means to participate in a trial,” said Holly Peay, co-principal investigator for DCN. “The more ways we find to speed the research process, clarify misconceptions, and minimize the intimidation factor often associated with clinical research, the faster we can uncover insights to help the Duchenne community.”

“The more ways we find to speed
the research process, clarify
misconceptions,and minimize
the intimidation factor often
associated with clinical research,
the faster we can uncover insights
to help the Duchenne community.”

Holly Peay– Co-Principal Investigator, DCN

One of the newest communication tactics recently unveiled by DCN is a decision tool that helps people with Duchenne and their families determine whether participating in clinical trials might be the right choice for them. This tool helps patients deliberate potential trial benefits, harms and burdens, and ultimately choose a trial that best suits their needs. The overall objective is to increase the number of people who make an informed choice to participate in clinical research.

PCORnet’s networks study a range of conditions and diseases, and effective engagement is central to every one of them. Learn more about how PCORnet is engaging networks and participants to advance clinical research and drive healthcare outcomes.


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

Early Registration Open for PCORI Annual Meeting

Early registration is now open for the PCORI Annual Meeting, which will take place Oct. 31- Nov. 2nd in Arlington, Va.  More than 1,000 members of the health care community will gather for this two-and-a-half day event which will include updates on how scientists, patients, caregivers, clinicians, payers, and others are working together to make health research more useful and relevant.

The event theme this year, “Delivering Results, Informing Choices,” sets the tone for what promises to be an exciting conference. Hear about the results from PCORI’s earliest-funded comparative clinical effectiveness (CER) studies and efforts to promote the use of those important findings in practice. Be part of the conversation about key trends in patient-centered outcomes research and connect with colleagues to share ideas for future research opportunities that will help patients and those who care for them make better-informed healthcare decisions. Register online before September 15th to get the early registration rate.

 

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

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.