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Research for the Rest of Us: Building Trustworthiness in PCORnet Public Webinar Sheds Light on Research Needs of Underserved Communities

People-centricity was front and center during the recent Building Trustworthiness in PCORnet public webinar, which took place on September 16, 2016. Similar to PCORnet’s Building Trustworthiness inaugural event in March 2016, the webinar was an opportunity to foster broad and rich discussions by listening deeply to community experts as they provide actionable insights on how we build a national clinical research network that communities can trust. In this webinar, moderated by Lesley Curtis, co-lead of the Distributed Research Network Operations Center for PCORnet, attendees heard perspectives from Sharon Terry, co-principal investigator, PCORnet Coordinating Center and principal investigator, Community-Engaged Network for All (CENA) Patient Powered Research Network (PPRN); Annesa Flentje, assistant professor at the University of California in San Francisco; Jennie David, former Patient Advisory Council co-chair for the ImproveCareNow PPRN; and Neely Williams, a patient advocate and administrator for the Community Partners Network and co-principal investigator for the PCORnet Bariatric Study.

Sharon set the framework for the session by challenging the audience to shift its approach to clinical research from the traditional sense of work that is done to the community to work that is done with the community. “We recognize that much of PCORnet’s research potential is gleaned from the knowledge and expertise of its stakeholders and partners,” she said. “Approaching clinical research with this posture of humility is just one feature that makes PCORnet so revolutionary.”



Annesa serves as the mental health lead for the PRIDEnet PPRN-affiliated Pride Study, which aims to help health professionals better understand the needs of the lesbian, gay, bisexual, transgender, and queer (LGBTQ) community. She kicked off her presentation with a focus on sexual and gender minorities, noting that in many cases, the key to building trust with this community is acknowledgement and respect.

“Many members of the LGBTQ community are not even asked about their gender identity and sexual orientation in research protocols,” said Annesa. “Failing to even ask about sexual orientation and gender identity makes this community invisible in our research. With simple efforts, like asking about gender identity prior to birth identity in our queries, we can show greater respect for this community and go a long way toward building trust and engagement.”

Jennie spoke next and leveraged the webinar to shed light on the pediatric chronic illness community. Using her own experience as a young patient with severe Crohn’s disease as an example, she explained how clinicians often diagnose pre-emptively without seeking to understand the rich spectrum of a patient’s lifestyle outside of his or her disease state.

“When I learned my large intestine needed to be removed, my surgeon assumed that for vanity reasons, a young woman like me would not want an external ostomy solution. But I had done research on my own and knew that the alternative procedure he suggested would lead to outcomes that were not a fit with my lifestyle and values,” said Jennie. “It is so important to remember that we are unique people with our own voices first and foremost—not patients, and definitely not research subjects. Our role as a patient is just one layer of identity in the broader spectrum of people’s lives.”

You can follow Jennie on Twitter at @Flat_Jennie and read more about her experience and recommendations for engaging children in research to advance meaningful outcomes.

Finally, Neely closed the webinar with her perspective as an African American woman who struggles with obesity. African Americans and people who are obese are often under-researched and under-represented in clinical studies. She explained the need to humanize data by using storytelling to transmit research results back to the community.

“When I speak to my community, I frequently hear that researchers came, they researched, and they were never heard from again,” said Neely. “If we want to build rich and beneficial relationships, it is essential that we bring communities into the fold by reporting outcomes and keeping the lines of communication open.”

Take a moment to read Neely’s opinion editorial recently published in The Tennessean.

Among these varied suggestions, one piece of advice from each presenter was consistent: we must keep the conversation going.

“We will never learn all that we can in a one-hour webinar or even a two-day workshop,” said Sharon. “This event was a great success, but there is still work to be done. Building a trustworthy, people-centered PCORnet necessitates frequent provocative discussions such as these, and I am already looking forward to the next opportunity to learn how we can make PCORnet a beacon for trustworthy clinical research.”

PCORI Spotlights PCORnet’s Obesity Focus for National Childhood Obesity Awareness Month

In observance of National Childhood Obesity Awareness Month, the Patient-Centered Outcomes Research Institute (PCORI) has authored a blog that highlights PEDSnet, a partner network of the National Patient-Centered Clinical Research Network, PCORnet, that has access to data from 5.1 million children. PEDSnet aims to find ways to provide the best medical care and best outcomes for children, and has obesity as a major focus.  The blog also highlights PCORI’s pediatric obesity focus, including two large observational research studies currently being conducted using PCORnet.

PCORnet Antibiotics & Childhood Obesity Study

One of these studies, based at Harvard Pilgrim Health Care in Boston, is examining the relationship between antibiotic use and weight gain during childhood, as well as engaging parents and physicians through focus groups and interviews to learn how results from this study might influence decisions about antibiotic use for young children. Previous research has found a link between the use of antibiotics, particularly broad-spectrum antibiotics, and an increased risk for obesity in later childhood, but research results are mixed. There also are many remaining questions about how timing and amount of antibiotics might be linked to childhood obesity and whether this relationship differs by race, ethnicity, and gender. In his recent PCORI guest blog, Lead Patient Principal Investigator Doug Lunsford brings the struggle of childhood obesity to life and discusses his efforts to make a difference. You can also hear him speak in the video below.

Ten of PCORnet’s Clinical Data Research Networks (CDRNs) and three of its Patient-Powered Research Networks (PPRNs) are participating in the study, with a possible cohort of 600,000 children overall to be included. All participating institutions have currently received IRB approval, and investigators are now finalizing the study’s first research query, which will examine de-identified individual data of children in participating institutions to assess 1) the association of antibiotic use before the age of two, 2) weight outcomes at age 5 and 10, and 3) growth trajectories until age 10. The study team has embraced stakeholder engagement as a core component of this study; its Executive Antibiotic Stakeholder Advisory Group (EASAG) has spent the first six months of the study developing an engagement plan, finalizing a focus group guide for parent focus groups, and initiating work on a study dissemination plan. In addition, the study was recently featured in the Knoxville Times and Stone Hearth News.

PCORnet Bariatric Study

The other PCORnet obesity study, based at Group Health Cooperative in Washington State, is comparing the health benefits and safety of the three main types of weight loss surgery. This bariatric surgery study is unusual in that it includes adolescents among its participants. The use of bariatric surgery to treat children and adolescents with severe obesity has increased in recent years; however, data on how well adolescents do after bariatric surgery are limited and include mostly studies of short duration. Leveraging the PCORnet Common Data Model (CDM) to organize data into a standard structure, the bariatric study will collect health data on several hundred adolescents who underwent bariatric surgery in the years 2005 through 2015. The study will follow these patients for up to five years after surgery to estimate the one-, three-, and five-year benefits and risks of the most common US procedures: roux-en-y gastric bypass, adjustable gastric banding, and sleeve gastrectomy. Analyses will compare across the three procedures 1) changes in weight, 2) rates of diabetes remission and relapse, and 3) the incidence of adverse events. In her recently published opinion editorial in The Tennessean, Patient Co-Principal Investigator for the bariatric study Neely Williams explains what it was like to be part of an underrepresented patient community seeking bariatric surgery and why patients need a louder voice in clinical research. You can also watch Williams speak about the patient advocacy perspective in the video below.

The PCORnet bariatric study has currently completed an initial round of characterizing the data into a common language via the PCORnet CDM. The study team is targeting late-September to send out its first query to address changes in weight following weight loss surgery. In addition, the study has engaged with Smart Patients to build an interactive community where patients and caregivers can learn from one another and build knowledge about their condition. Representatives from Smart Patients attended the Obesity Action Coalition’s Your Weight Matters national convention to introduce Smart Patients to meeting attendees. The PCORnet bariatric study was also showcased recently at Advancing the Science of Community Engaged Research in Washington, DC.

PCORnet Colleagues Share Insights to Enhance Drug Review at FDA’s PDUFA Public Meeting

Dr. Adrian Hernandez and Sharon Terry, co-principal investigators, PCORnet Coordinating Center, attended the U.S. Food and Drug Administration (FDA) Prescription Drug User Fee Act (PDUFA) Reauthorization Public Meeting on August 15, 2016. In alignment with the meeting’s goal to solicit public feedback on the agreement forged between FDA and stakeholders to evolve the PDUFA program to make the drug review process more efficient, Hernandez and Terry voiced their support of the agreement’s efforts toward patient inclusion, real-world evidence use, and rare disease drug development. The latest reauthorization, which is the sixth iteration of PDUFA, will determine the FDA’s user fee policies from 2018 to 2022.

“With the current legislative authority for PDUFA expiring in September 2017, FDA is seizing the opportunity to revamp the PDUFA program to align with the future of drug development,” said Hernandez. “In my professional capacity at the National Patient-Centered Clinical Research Network (PCORnet) and Duke Clinical Research Institute (DCRI), and in my personal life as a father, brother, and son of family members who have conditions that could be improved with better real-world evidence use and the inclusion of patient voices in research, I was pleased to see that the evolved PDUFA agreement emphasized many of the areas we at PCORnet and the DCRI are passionate about furthering.”

PCORnet as a Tool for Transformation

Indeed, in her introductory address, Janet Woodcock, director of FDA’s Center for Drug Evaluation and Research (CDER), highlighted PDUFA VI’s intent to enhance patient input and integrate it into regulatory decision making. Woodcock also noted that fit for purpose tools to collect meaningful patient input must to be addressed. With access to more than 145 million people’s health data, PCORnet is well positioned to serve as a key tool in this transformation toward a clinical research culture driven by the needs of patients. By tapping into electronic health records, insurance claims data, data reported directly by people, and other data sources, PCORnet offers researchers an innovative network underpinned with the infrastructure, tools, and policies to support rapid, efficient clinical research. In fact, it is the first network of its kind to involve patients as well as those who care for them in a substantive way. Patients are central to the governance structure of PCORnet and are also key in determining what research questions will be studied.

Facilitating the Patient Perspective in Drug Development

The meeting explored the FDA’s continued interest in patient-focused drug development, an aspect of PDUFA V that created a successful, albeit limited, program to ascertain the preferences and lived experiences of individuals affected by diseases and conditions. PDUFA VI will facilitate the systematic integration of the patient perspective into the drug development and regulatory review of innovative medicines.

“It is critical that we continue to adopt interventions based on community involvement, patient reported outcomes (PROs), and the preferences of those who know best—the very patients who will use the medications and products,” said Terry. “PCORnet is uniquely poised to help with this because of our focus on integrating clinicians, people, and their communities into all aspects of research.”

The PDUFA reauthorization also explores the need and ability to enhance the use of real-world evidence in regulatory decision-making, a focus area for which both Hernandez and Terry voiced strong support. For more information on their views, read PCORnet Leaders Participate in Policy Roundtable to Advance the Use of Real-World Evidence.

“Every moment, there are patient experiences occurring that are not being included in a formal way for evidence,” said Terry. “Patients expect that we will learn from what they go through to improve the experience for those who will walk in their shoes the next time, which unfortunately often does not happen.  We applaud that PDUFA VI is driving change toward a better approach through its emphasis on real-world evidence such as that being generated every day in PCORnet.”

Finally, the meeting addressed the need to promote rare disease drug development by continuing with PDUFA V’s Rare Disease Program (RDP) activities, as well as conducting outreach to sponsors and patient groups to promote best practices. This is a continued focus area for PCORnet, with one or more rare diseases as the focus of half of PCORnet’s Patient-Powered Research Networks. In addition, each of PCORnet’s Clinical Data Research Networks has selected a specific rare disease and is developing methods for identifying and characterizing it, as well as recruiting patients.

To learn more about the PDUFA Public Meeting, view the full webcast.

PCORI Announces Progress Toward PCORnet’s White House Cancer Moonshot Commitments

The Patient-Centered Outcomes Research Institute (PCORI) this week issued an update to the White House outlining progress made by its National Patient-Centered Clinical Research Network (PCORnet) toward its commitments to the Administration’s “Moonshot” initiative to accelerate cancer research. As the nation’s most innovative and robust patient-centered clinical research network, PCORnet offers cancer researchers a wealth of real-world insights to address unmet research needs and reduce disparities in cancer care and outcomes. PCORnet has experienced great momentum over the past several weeks, which is reflected in notable progress made toward its commitments pledged to White House Cancer Moonshot.

PCORnet’s first commitment is to enhance its highly representative national clinical research network to allow large-scale research, including cancer research, to be conducted with greater quality and efficiency.

In the 12 weeks since first pledging its Moonshot commitments, PCORnet has already grown its number of patients with a demographic record from 110 million to 145 million, substantially enriching its data pool to support observational studies as well as clinical trials. To ready the network for research, PCORnet’s developers are continuing to characterize its available data and to enhance quality. The team is also working with its partners to examine the data, explore questionable patterns, flag missing data, and determine its utility to answer specific research questions.

PCORnet’s second commitment is to create data tables that include descriptive characteristics of patient cohorts treated for the most common types of cancer (including breast, colorectal, prostate, lung, and melanoma) within PCORnet’s 130 healthcare systems.

This is a massive undertaking that requires a stepwise process, with the first step being to organize all of PCORnet’s available data into a standard structure called the Common Data Model (CDM) version 3.0. This activity is well underway, and the “DataMarts,” or repositories of structured data from PCORnet’s healthcare systems, have made meaningful progress toward transforming their electronic health records into the CDM to ready them for research use. In fact, 70 percent of PCORnet’s DataMarts have now met the technical criteria for structure in the CDM and have signed PCORnet’s data-sharing agreement, with the remaining DataMarts expected to follow suit within the next six months. With these data in a standard structure, PCORnet is actively building a “Table 1” to summarize the demographics of its population – including sex, race, age, and 10 conditions of interest – and to answer research questions.

Progress toward this commitment has also contributed to the arrival at an exciting milestone: PCORnet’s very first research query, known as the “weight cohort research query,” was sent on July 11, 2016 and results are expected back in August, 2016. The results of this query will provide detailed weight information across PCORnet’s network and inform its obesity demonstration projects. With PCORnet’s data nearly characterized and its first research queries already in motion to test the strength and readiness of the network, the team will soon be in a position to produce descriptive tables of patient cohorts with the common cancers mentioned above.

PCORnet’s final commitment is to build a Cancer Collaborative Research Group (CRG) affiliated with PCORnet that brings together teams of patients, clinicians, and investigators to 1) identify and prioritize our nation’s top cancer research questions; 2) develop approaches for using real-world electronic data to address unmet research needs in prevention, diagnosis, and treatment of cancer; and 3) reduce disparities in cancer care and outcomes.

PCORnet’s efforts to this commitment are well underway, with the details of its Cancer CRG concept submitted to PCORI’s executive committee on July 15, 2016 and the notice of interest process initiated. A PCORnet Cancer CRG Planning Committee has also been established. This committee is led by patients, clinicians and investigators from our Greater Plains Collaborative (GPC) Clinical Data Research Network (CDRN) focused on breast cancer, Kaiser Permanente & Strategic Partners Patient Outcomes Research to Advance Learning (PORTAL) CDRN focused on colorectal cancer, and the American BRCA Outcomes and Utilization of Testing (ABOUT) Patient-Powered Research Network (PPRN) focused on hereditary breast and ovarian cancer.

One of the noted primary objectives of the proposed Cancer CRG will be to rapidly enhance the current PCORnet CDM by including key cancer-specific data tables and structures supportive of the Administration’s Cancer Moonshot, including, but not limited to, tumor registry, cancer systemic therapy, germline mutations, and molecular marker tables. In addition, breast and colorectal cancer patients who were identified from electronic health records and merged registry data have already been surveyed to collect patient-reported data. This will be valuable when considering what cancer-specific data, including patient-reported data, should be added to the CDM.

To further solidify the Cancer CRG and its remit, the networks are currently in collaboration to finalize their proposal in preparation for PCORnet’s October 31, 2016 CRG application deadline. The final CRG recommendations will be presented to PCORI’s executive committee in November 2016 and in early December 2016, it is expected that the PCORnet Council to vote to approve and fund the Cancer CRG.

PCORnet will continue to pursue its three Moonshot commitments enthusiastically in the months ahead, with progress reports planned on a quarterly basis in 2017. Stay tuned for more updates on these goals as PCORI and PCORnet partner to advance cancer research and care.

PCORnet Advocate Calls for Patients to Have a Louder Voice in Medical Research

Neely Williams, patient co-investigator for PCORnet’s Mid-South Clinical Data Research Network, was featured in The Tennessean on Sunday, August 7, 2016 sharing her perspective on why patients need a louder voice in medical research. Read the full story here.

As an African American woman living in the Deep South who has battled obesity for most of her adult life, Williams knows all too well what it means to be part of an underrepresented community seeking answers to an under-researched disease. In the opinion editorial, Williams shares her story of living with obesity and seeking a bariatric surgery option that would deliver the best health outcomes for her, personally. What followed was a surgery that was not only minimally effective in the long-term, but also resulted in multiple subsequent surgeries. Williams shares her frustrating and unsettling experience of receiving medical advice based on research from a pool of individuals whose experience with obesity was vastly different from her own.

To help others have a better experience, Williams is a driving force behind PCORnet, the National Patient-Centered Clinical Research Network, an initiative that was launched with PCORI funding in 2013.  PCORnet is trailblazing a new approach to clinical research – one that invites all the voices in every community to join the chorus. Williams is currently the patient co-investigator for PCORnet’s bariatric study to glean insights on which procedure has the best results for specific patient communities. Williams believes that the work she is doing can build stronger collaborations among patients and doctors and clinicians of all types, and bring greater awareness into the community.

By shedding light on real-life experiences and bridging important knowledge gaps, studies like these are reducing the likelihood that tomorrow’s bariatric patients will have experiences like Neely’s. To learn more about Williams, her experience and her role in PCORnet’s bariatric study, watch her video.

Bariatric Surgery Study A Patient Advocacy Perspective

PCORI Guest Blog Explores PCORnet’s Multiple Sclerosis Research Network Built on Patient Input

PCORnet’s Multiple Sclerosis Patient-Powered Research Network, iConquerMS, was recently featured in a PCORI Guest Blog titled “Multiple Sclerosis Research Network Builds on Patient Input,” authored jointly by the PPRN’s Co-PIs, Laura Kolaczkowski and Robert McBurney.  About 400,000 Americans have multiple sclerosis, but their experiences vary widely. To help clinicians figure out which treatments work best for which people, patients have joined researchers to develop this innovative network.  iConquerMS combines patients’ ideas and health data to accelerate research on MS treatments and improve day-to-day life of people who have the disease.  Guest blog co-author Robert McBurney, Co-Principal Investigator for iConquerMS, recently filmed a PCORnet video describing PCORnet’s unique approach to health research, involving patients throughout the process.

In addition, Cherie C. Binns, Research Committee Member for iConquerMS, recently authored a PCORnet Guest Blog titled “Patient Involvement in Research: Innovative, Patient-Powered, Welcoming.”

For more information, please visit

PCORnet Features New Video and News from Partner Network, ImproveCareNow

PCORnet invites you to learn more about our partner network, ImproveCareNow, by watching our latest video featuring Dr. Peter Margolis, Principal Investigator for ImproveCareNow.

As a Patient Powered Research Network (PPRN) funded by PCORI, and a PCORnet Partner Network, ImproveCareNow is transforming care, health and costs for all children and youth with Crohn’s disease and ulcerative colitis (collectively known as Inflammatory Bowel Disease or IBD). It does this by actively engaging patients, parents, clinicians and researchers in improving health care systems, coproducing health innovations, and discovering answers to those questions deemed most important by the community.

Connect with ImproveCareNow and learn even more by visiting their NEW! website and reading stories from patients, clinicians and improvers on their blog, LOOP.

In other news, ImproveCareNow recently announced its participation in a cross-PPRN demonstration project, funded by PCORI, to determine the optimal type and frequency of mindfulness-based treatment for managing stress. Read more about mindfulness-based treatment and IBD in this LOOP blog post.



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


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

PCORnet’s MoodNetwork to Lead $4 Million Research Study Comparing Stress Management Approaches

July 12, 2016 – Patient-Centered Outcomes Research Institute Funds Project as a Demonstration of PCORnet

A team of patient and stakeholder partners and investigators from 20 Patient-Powered Research Networks (PPRNs) that comprise PCORnet will take part in a $4 million research project, Healthy Mind Healthy You, to determine the optimal type and frequency of mindfulness-based treatment for managing stress. This project will be under the leadership of MoodNetwork, an online network forpatients with bipolar disorder and depression. MoodNetwork, based at Massachusetts General Hospital (MGH), is one of 20 PCORI-funded Patient-Powered Research Networks (PPRNs) participating in this study, which will also demonstrate the capabilities of PCORnet, the National Patient-Centered Clinical Research Network.

An ambitious initiative funded by the Patient-Centered Outcomes Research Institute (PCORI), PCORnet is accelerating the nation’s ability to conduct patient-centered clinical research more efficiently by using health information shared by patients and other clinical data. PPRNs, which are collaborations among patients, other stakeholders, and research partners who share an interest in advancing patient-centered research, comprise 20 of the 33 networks that together make up PCORnet.

Healthy Mind Healthy You will randomly assign participants across more than 100 conditions to a “light” (3-session) or “standard” (8-session) online mindfulness-based intervention to determine which treatment is most helpful for improving well-being. This topic has been recognized as a top priority area for comparative effectiveness research by the Institute of Medicine and has the potential to inform patients, caregivers, and clinicians as to the most effective dose of mindfulness for stress and wellness management. This study will be led by a team of active stakeholder and patient partners across the 20 patient powered research networks.

“This study will not only help people determine the right amount of mindfulness that could help them cope better with stress, but will also demonstrate how the 20 PPRNs can combine their expertise to improve the lives of people across over 100 conditions and understudied populations,” said Andrew A. Nierenberg, M.D., Principal Investigator of the MoodNetwork and Director of the Bipolar Clinic and Research Program at MGH.

PCORI provided the funds to support this research project. The funding award has been approved pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract.

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. For more information about PCORI’s funding, visit

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of PCORI that aims 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


About Massachusetts General Hospital

Massachusetts General Hospital, founded in 1811, is the original and largest teaching hospital of Harvard Medical School. The MGH conducts the largest hospital-based research program in the United States, with an annual research budget of more than $800 million and major research centers in AIDS, cardiovascular research, cancer, computational and integrative biology, cutaneous biology, human genetics, medical imaging, neurodegenerative disorders, regenerative medicine, reproductive biology, systems biology, transplantation biology and photomedicine. In July 2015, MGH returned into the number one spot on the 2015-16 U.S. News & World Report list of “America’s Best Hospitals.”

MGH Media Contact:

Noah Brown
Public Affairs & Media Relations Officer
[email protected]

PCORnet, PCORI’s Health Data Initiative, Commits to Advance White House Cancer Moonshot

WASHINGTON, DC (June 29, 2016) – The Patient-Centered Outcomes Research Institute (PCORI) today announced its support of Vice President Joe Biden’s Cancer Moonshot program to accelerate progress in cancer research and care through a series of commitments by PCORnet, PCORI’s ambitious effort to harness health data and patient partnerships to accelerate the pace and power of clinical research.

PCORnet, the National Patient-Centered Clinical Research Network, is a unique collaboration involving 33 individual partner networks working to help the nation conduct clinical research faster, more efficiently, and at lower cost by incorporating patient health information and other data. PCORnet launched with PCORI funding in 2013 and expanded in 2015.

“We and our PCORnet colleagues are delighted to work with the White House Cancer Moonshot Task Force, federal agencies, and private sector partners to support the Moonshot’s mission to advance the vital research needed to offer people with cancer and their families more effective care options,” said PCORI Executive Director Joe Selby, MD, MPH. “This exciting commitment by PCORnet is a natural extension of PCORI’s mission to fund research designed to show which care choices work best for whom under what circumstances, based on outcomes important to patients.”

To support the Cancer Moonshot, PCORnet commits to:

  1. Enhancing its highly representative national clinical research network—which includes data from more than 110 million patients and supports a learning healthcare system—to allow cancer and other large-scale research to be conducted with greater quality and efficiency.
  1. Creating data tables that include descriptive characteristics of patient cohorts treated for the most common types of cancer—including breast, colorectal, prostate, lung, and melanoma—within the 130 healthcare systems affiliated with PCORnet’s partner networks.
  1. Planning a Cancer Collaborative Research Group (CRG) within PCORnet that will convene patients, clinicians and investigators to: 1) identify and prioritize top research questions; 2) develop approaches for using real-world electronic data to address unmet research needs in cancer prevention, diagnosis, and treatment; and 3) reduce disparities in cancer care and outcomes.

PCORnet, through its partner networks, has already made substantial progress in supporting high-quality, patient-centered cancer research. Researchers involved with PCORnet’s partner networks have built observational data sets based on large cohorts of patients with colorectal, breast, hereditary ovarian and breast cancer, as well as pediatric cancers. The vast scale of PCORnet also supports research in rare cancers.

Among PCORnet partner networks with major investments in cancer research is the American BRCA Outcomes and Utilization of Testing Patient-Powered Research Network (ABOUT PPRN), a patient-driven network focused on hereditary breast and ovarian cancer. In addition, the Patient Outcomes Research to Advance Learning network (PORTAL) has developed a colorectal cancer cohort with detailed clinical data from more than 16,000 patients. The Greater Plains Collaborative network, which includes eight National Cancer Institute-designated cancer centers, has built a large breast cancer cohort. And PEDSnet, which encompasses eight pediatric health systems, provides resources on pediatric cancers.

The PCORnet Cancer CRG planning committee, presently led by patients, clinicians, and investigators from the PORTAL, GPC and the ABOUT networks, will survey the landscape of potential additional partners, both inside and outside of PCORnet, and create work plans for the research group. The Cancer CRG will build on PCORnet’s experience and resources of standardized EHR, clinical and patient-reported data. The planning group will seek funding from PCORI to establish the research group by October of 2016.

In addition to its support of patient-centered cancer research via PCORnet, PCORI has awarded nearly $157 million to support comparative clinical effectiveness (CER) studies related to cancer. These patient-centered studies, such as the WISDOM Trial and COMET Trial, compare two or more available options for cancer care with the goal of determining which works best for which patients given their needs and preferences. Among them are studies focusing on cancer survivors’ needs as well as on prevention, screening, and treatment.

Those interested in collaborating with PCORnet on the Cancer CRG may contact [email protected]. To view PCORnet’s full commitment to the White House Cancer Moonshot Website, submitted on Friday, May 27, click here.



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


The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit 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 continuously seeking input from a broad range of stakeholders to guide its work. More information is available at

PCORnet Blog

Patient Involvement in Research: Innovative, Patient-Powered, Welcoming

Date: June 13, 2016

Author: Cherie C. Binns, RN BS MSCN, Research Committee Member for Multiple Sclerosis PPRN

Cherie Binns, received her nursing degree from Albany Medical Center, her degree in Gerontology from the University of Rhode Island, and is one of fewer than a thousand nurses worldwide to be certified in multiple sclerosis nursing. Cherie is a frequent presenter for patient education programs for multiple sclerosis and is a “Resource Finder” for many who find themselves “falling through the cracks.” Read more about Cherie Binns.

I’m a patient helping to change the culture of research and I am excited! It feels great to be empowered, encouraged, and a part of something larger than myself. I get to be a part of things I could only imagine someone else doing and do things I never really thought I could achieve. How did all this happen? I became part of a Patient-Powered Research Network (PPRN) that has a national and international membership. It is the brainchild of the Accelerated Cure Project for multiple sclerosis (MS) and is called, appropriately, iConquerMS™. I was asked if I would help out on a committee for a larger network, PCORnet, the National Patient-Centered Clinical Research Network, which is made up of 20 PPRNs and 13 CDRNs (Clinical Data Research Networks). This initiative of the Patient-Centered Outcomes Research Institute (PCORI) is designed to conduct health research faster, more efficiently, and at lower cost than ever before, and to do it with patients and other stakeholders as collaborators.

Whoa! I never saw myself in the research arena even as a test subject. I hated statistics classes in college. But then, between jobs, I was asked to lend my nursing expertise to coordinate a small clinical trial to try and find some sort of marker that showed that a drug was working in people with a chronic illness. That led to another project that put me in a conference center with more than a hundred other people who were committed to bringing a drug to market that would help people with gait problems walk more easily. I had been bitten by a bug of curiosity and excitement and felt intellectually stimulated and valuable for perhaps the first time in my life, or certainly for the first time in ages.

You see, for years I had been experiencing myriad symptoms that did not make sense: bone-crushing fatigue, visual disruptions, trouble walking, difficulty finding a word when trying to explain something (and more). It had sidelined my career as a home care case management nurse. Subsequently, these symptoms led to a diagnosis of MS, a disease that affects nearly half a million people in the United States and well over a million worldwide. Multiple sclerosis (MS) has no cure, but around the time of my diagnosis, a medication came on the market to help manage it. Today, there are twelve FDA-approved therapies available and more coming out in the next few years. Although I spent the better part of several years homebound, scooter dependent, and legally blind, proper management of my condition, change in lifestyle patterns, and education saw me improving considerably.

In the summer of 2014, I was approached by someone who had found me on LinkedIn when searching for people who might be a good fit for a research committee as part of a PPRN. This network was created to address research projects that had a direct impact on the MS population and would reach out to that particular group of people to ask what research was REALLY important to them and not just those in the research community. People wanted to know how to choose a therapy from the available choices. That information, to date, is not available but hopefully soon will be. “Why do women get MS at a rate almost three times that of men?” is another question being considered.

Today, there are PPRNs all over the country that are disease-specific, including some focused on rare diseases for which there are not yet any therapies. And hospitals, universities, clinics, and researchers are banding together to form CDRNs with combined resources to move the process more efficiently and with greater cost effectiveness. These CDRNs and PPRNs are working together within PCORnet, a “network of networks,” with energy, enthusiasm, cooperation, and resource-sharing to answer questions that will lead to greater access and uniformity in healthcare. They will lower costs and create faster, more efficient processes and protocols for doing research that gives us answers we need to live higher quality, healthier, and more productive lives.

You can be involved in patient-powered research as a person with a condition or a genetic likelihood of developing a specific illness, or as a caregiver, patient advocate, clinician, or researcher. All are welcome and encouraged to contribute thoughts, ideas, and skills to this amazing network that has come to include some of the most motivated, innovative, skilled, and empowered people in this country under the umbrella of PCORnet.

For more information go to To add your ideas and information to help find a cure for multiple sclerosis, go to