All posts by julie.schulman@duke.edu

PCORnet Highlighted in Recent Publications

PCORnet, the National Patient-Centered Clinical Research Network, a PCORI initiative, was recently highlighted in two articles that underscore its increasing influence as a leader in the movement toward patient-centered research. The first was authored by PCORnet’s Patient Outcomes Research to Advance Learning (PORTAL) Clinical Data Research Network (CDRN) and published in Obesity. It explores the implications of mental illness on bariatric surgery outcomes. The second, a blog in Health Affairs authored by co-lead of PCORnet’s Distributed Research Network Operations Center Lesley Curtis, explains the transformative potential of PCORnet’s Common Data Model (CDM).

The piece contributed by PORTAL was published on April 25 in Obesity, the official journal of The Obesity Society. The article describes the research results of a cohort study examining whether patients with mental illness, particularly those with more severe mental illness, would have less weight loss and higher postoperative acute care use following bariatric surgery compared to patients with no mental illness. The study team, which compared electronic health record (EHR) data from more than 8,000 individuals who underwent bariatric surgery in 2012 and 2013 across several US healthcare systems, ultimately concluded that although a weight loss differential was not observed, those with mental illness were much more likely to require hospital use after surgery. This finding was important, as it underscores the need to explore supportive postoperative outreach for bariatric surgery patients with known mental illness to minimize risk of adverse health outcomes.

The Health Affairs blog authored by Curtis was published on June 6. It discusses how the power of electronic health records and administrative information, once stifled within “silos of babel” with limited ability to exchange information, is finally being unlocked with the use of PCORnet’s CDM. The CDM’s ability to successfully harmonize data across more than 130 diverse organizations representing more than 122 million individuals who had a medical encounter in the past five years is impressive. However, what makes PCORnet and its CDM truly revolutionary is its ability to connect key stakeholders, including patients, across the research process, allowing for important insights from Patient Reported Outcomes (PROs). In fact, Curtis argues that as we refine the CDM and enhance our ability to harness good quality, usable data from EHRs, health care will see a revolution that rivals the Internet’s impact on other industries.

Be on the lookout for more mentions of our innovative Network in the months to come!

 

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.

PCORnet Partner Networks Collaborate with Federal Agencies to Evaluate Effects of Health Policy on Diabetes Outcomes

Do you know somebody affected by diabetes? With more than 29 million Americans suffering from Type 1 or Type 2 diabetes and another 86 million affected by prediabetes, chances are, you do. In fact, diabetes has become so prevalent that the prevention and management of these serious diseases have become a national priority. In March 2016, the Patient-Centered Outcomes Research Institute (PCORI) responded by teaming up with the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH)/National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) to advance the second phase of the Natural Experiments for Translation in Diabetes (NEXT-D) initiative dedicated to reducing the burden of diabetes across the U.S.

NEXT-D2, the second phase of the NEXT-D initiative, uses the collective input of eight academic institutions to provide rigorous evaluations of recently introduced policies or programs from both public agencies and private organizations that may impact diabetes in the U.S.

The NEXT-D2 team considers such programs “natural experiments”—that is, experiments that are rolled out in real-world settings without the control of research investigators. For example, how has Medicaid expansion affected the health outcomes of patients with diabetes? What are the health impacts of high deductible health plans? Over the course of five years, NEXT-D2 aims to examine these natural experiments to generate compelling evidence that will ultimately guide the decisions of U.S. healthcare policies and programs related to diabetes prevention and management.

“By leveraging resources from our network of funders and participating institutions, NEXT-D2 has the means to explore the health impact of recent policies and programs on diverse populations at a national scale,” said Abel Kho, co-principal investigator of the Northwestern NEXT-D2-team. “So often, well intentioned efforts are introduced, but we do not have the concrete evidence to validate their utility. Through NEXT-D2, we will gain insights from well designed natural experiments to better understand how health care legislation can effectively reduce diabetes risk, its complications, and health inequalities across broad segments of the U.S. population.”

Six of the PCORI-funded National Patient-Centered Clinical Research Network’s (PCORnet) Clinical Data Research Networks (CDRN) are contributors to NEXT-D2’s efforts, including PaTH: Towards a Learning Health System in the Mid-Atlantic Region, Research Action for Health Network (REACHnet), Accelerating Data Value Across a National Community Health Center Network (ADVANCE), Chicago Area Patient Centered Outcomes Research Network (CAPriCORN), the New York City Clinical Data Research Network (NYC-CDRN) and the Greater Plains Collaborative (GPC).

Among the many projects NEXT-D2 is exploring are three that are funded specifically by PCORI. Those explore the impact of targeted health policies to prevent diabetes; the impact of Medicaid health homes on diabetics; and the impact of state health policies on diabetes outcomes. Two additional studies funded by the CDC are using the PCORnet Partner Networks CAPriCORN and ADVANCE for NEXT-D2 research.

NEXT-D2 is also leveraging PCORnet’s existing infrastructure, with particular reliance on its Common Data Model (CDM). The NEXT-D2 team has been utilizing the CDM to standardize its data and collaborating with PCORnet to continuously improve the CDM for future research such as through the addition of standardized data on social determinants of health. By shedding new light on important diabetes factors and adding refinements to our CDM, NEXT-D2 is an excellent example of a study that is working to bring healthcare back to our most valuable stakeholders: patients.

 

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.

PCORnet Blog

What Should I Eat? (The Burning Question in Crohn’s Disease)

Author:  Carol Brotherton, PhD, MSN, BSN, the Co-Principal Investigator and Patient Representative for the DINE-CD, a PCORnet Patient Powered Research Network (PPRN) study funded by PCORI.

Carol earned her nursing degree from the University of Delaware. She earned Masters and Doctoral degrees in Nursing from the University of Virginia. She discovered during 15 years of gastroenterology nursing that her greatest professional passion is to help people with inflammatory bowel disease – the disease with which she has lived since 1977.


Everybody with Crohn’s disease (CD) is a researcher. We research privately, because CD isolates us with symptoms too “impolite” to talk about. We quietly think, “If I avoid ‘these’ foods, maybe my diarrhea will stop. Or, if I take ‘this’ supplement, maybe eating won’t double me over in pain.” We work alone, alone, alone, often for a lifetime.

The Crohn’s and Colitis Foundation of America launched CCFA Partners to create a mechanism where patients could partner with investigators to address questions pertinent to everyday life with inflammatory bowel disease; CCFA Partners is one of the 33 individual networks that form PCORnet, the National Patient-Centered Clinical Research Network.

CCFA Partners is a major opportunity for people with Crohn’s disease to work together as a team both with each other and with scientific leaders. We’re no longer limited to working alone or even in small groups. Instead, online research surveys turn our personal experiences into big, analyzable data. Together, we help researchers shed light on important connections between health behaviors and CD symptoms through formal research.

“What should I eat?” is the big question on our minds.

As Co-Principal Investigator for the research study known as DINE-CD (Comparative Effectiveness of Specific Carbohydrate and Mediterranean Diets to Induce Remission in Patients with Crohn’s Disease– a PCORI-funded Demonstration Study) a randomized, multicenter trial designed to compare the effects of two diets on disease activity in CD, I’m excited about this ‘next natural step’ in my lifetime of experimenting with the effects of food on CD symptoms. It’s an opportunity not possible before CCFA Partners and PCORnet.

I’m acutely aware of the importance of CD diet research. I’ve maintained a 35-year remission of CD through diet alone; thus, I know food can heal gut inflammation and promote gut health for me. However, 15 years of gastroenterology nursing and 10 years conducting Crohn’s disease research taught me that larger clinical studies will be needed before CD diet recommendations can become standard practice.

Before involvement with CCFA Partners, I conducted CD diet studies that were exciting steps forward. However, my small studies couldn’t capture as much far-reaching attention as would a drop in an ocean.

Then I partnered with CCFA Partners researchers. (Watch this video about CCFA Partners.)

The size of the CCFA Partners database (>14,000 participants) and the expertise of the CCFA Partners researchers catapulted my research to another level. My latest article entitled, “Avoidance of Fiber Is Associated with Greater Risk of Crohn’s Disease Flare in a 6-Month Period” has been cited in scientific journals and reached the top 5% of all research outputs scored by Altmetric.

All of this led to the opportunity to transition into my current role as patient representative on the DINE-CD clinical study. It was my pleasure and privilege to participate as a ‘patient’ in the CCFA Partners research question development – proposing a CD research question of my own, and then watching the various diet-focused questions rise as ‘patients’ voted. The process culminated in conceptualization of the DINE-CD study.

Being a patient representative invigorates me. I meet monthly with a high-caliber group charged with considering and adopting solutions to various design issues that inevitably arise during project planning. I also collaborate with a small dedicated workgroup charged with developing the materials needed to help participants understand and complete the study protocol.

Our workgroup members spanned three states, and we used telephone conferences and Webex to coordinate our efforts. Over a period of months, we produced all the necessary educational documents:

  • Descriptions of the two diets, to be used for screening purposes
  • ‘Welcome’ video script
  • ‘Tips for Following the Diet Away from Home’ video scripts (one per diet)
  • ‘Tips for Following the Diet During Weeks 7-12’ video scripts (one per diet)
  • ‘Frequently Asked Questions” with answers (one per diet)
  • ‘Permitted and Not-Permitted Foods’ lists (one per diet)

We each drafted one or two documents, then we all edited each document. Diligent work produced accurate, clear, and user-friendly materials. I loved being part of this group that demonstrated great attention to detail and commitment to excellence throughout the process.

I first learned about the Patient-Centered Outcomes Research Institute (PCORI) years ago, at the National State of the Science, Congress on Nursing Research. There I heard about PCORI’s intention to fund research that incorporates patients into every stage of the investigation, from conception to completion. Not in my wildest dream could I foresee back then the powerful way PCORI-funded research would eventually produce great opportunities for a person like me – someone who is passionate about sacrificing time and effort to help individuals with CD find personal peace with food.

 

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.

PCORnet’s PEDSnet CDRN Longitudinal Study of Data Quality Published in Journal of American Medical Informatics Association

Data quality is a crucial consideration when leveraging a Clinical Data Research Network (CDRN) to conduct large-scale research. The PEDSnet CDRN is helping to validate the utility of CDRN data with a study featuring an in-depth analysis of its data quality that was recently featured in the Journal of American Medical Informatics Association (JAMIA). PEDSnet is a pediatric CDRN within the National-Patient Centered Clinical Research Network (PCORnet), a PCORI initiative committed to furthering people-centered research and driving meaningful patient outcomes. The study findings, which were co-authored by PEDSnet Informatics Site Leads L. Charles Bailey, Michael Kahn and Keith Marsolo, represent an important step toward greater widespread use of CDRNs for comparative effectiveness research (CER).

The study examined a range of data quality hurdles encountered by PEDSnet over an 18-month period, bringing to light the cause of key challenges specific to CDRNs that may impact research readiness, such as missing data and outliers. The PEDSnet longitudinal study of its data quality is expected to be a valuable resource for other CDRNs to gain important insights and lessons learned applicable to their own network, accelerating our nation’s capacity to conduct real-world research driven by and for the needs of patients.

 

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.

PCORnet Releases Refreshed Data and Expanded Conditions of Interest

The National Patient-Centered Clinical Research Network, PCORnet, today released a refreshed view of its data that sheds light on more recent patient encounters than was previously available and includes an expanded list of conditions of interest. Founded in 2014 as an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI), PCORnet aims to speed the pace and quality of patient-centered clinical research in the United States by engaging stakeholders across all steps of the research process.

In October 2016, PCORnet offered the first glimpse inside the Network when it released initial data on the demographics and nine conditions of interest of up to 41 million individuals who received care at a PCORnet network partner in 2014. The new data released today expands that scope to nearly 46 million individuals and offers a more recent view of encounters spanning from October 1, 2014 to September 30, 2015. In addition to the nine conditions of interest included in the initial release, the updated report also offers counts for diabetes patients, offering researchers new insights into this important population. These enhanced numbers reflect the growing momentum behind PCORnet – in comparison to the data released in October 2016, today’s numbers are sourced from more sites and patient encounters for each condition.

“We are pleased to offer researchers a more robust view of the data from more than 100 health institutions and the millions of Americans PCORnet represents,” said PCORI Executive Director Joe Selby, MD, MPH. “In the coming months, we will continue to refine and refresh our data in pursuit of our mission to unite people, clinicians, and health systems to empower patients with evidence-based insights.”

 

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.

Influential Healthcare Publications Recognize PCORnet for Its Important Role in Driving Patient-Centered Research

As the National Patient-Centered Clinical Research Network (PCORnet), a PCORI initiative, continues to gain momentum as a model for patient-centered research, several notable publications are recognizing the Network’s innovation. Three recent publications are out that provide evidence of PCORnet’s increasing influence in the movement toward community-driven research.

The first is a discussion paper released by the National Academy of Medicine that considers the benefits of moving to a continuous learning healthcare system, which has been a goal of PCORnet since its inception. In such a system, both experience and research are simultaneously used to generate new knowledge and improve patient involvement and care processes. The paper argues that achieving a continuous learning healthcare system is possible by actively engaging front-line clinicians in the design and conduct of activities. This continuous learning atmosphere will create new knowledge, return data to clinicians and patients to guide care, reduce costs, and create value for those served. The paper was co-authored by several individuals affiliated with the PCORnet Coordinating Center, the ADAPTABLE Study, the INVESTED Study, the New York City Clinical Data Research Network (NYC-CDRN), and the Research Action for Health Network (REACHnet).

Understanding and communicating the key concepts of this learning system is a priority for PCORnet, and in order to help this movement, we are committed to engaging diverse stakeholders through various social media tools and platforms. Here, you can find a social media toolkit developed by the National Academy of Medicine that includes suggested messages and graphics designed to help you and your team to promote and communicate the importance of moving to a continuous learning healthcare system.

Along with the push for a continuous learning system, there is also an increasing need for new informed consent processes to drive efficiency in patient engagement. To that end, the New England Journal of Medicine (NEJM) recently released an article that highlights how PCORnet’s ADAPTABLE study is positively changing clinical research by engaging in electronic consent processes and web-based design to improve and expand the informed consent processes for both researchers and participants.  According to the NEJM article, most studies have shown that participants recall crucial facts about a study better with the use of these kinds of interactive features, proving that PCORnet and its ADAPTABLE study are transforming the culture of clinical research to put patients’ needs first.

Finally, PCORnet recently received yet another shout-out with a perspective piece for Circulation, a journal of the American Heart Association, compiled by Adrian Hernandez, ADAPTABLE Study Co-PI, and Henry Cruz, a patient Adaptor in the ADAPTABLE Study. In this article, the two authors discuss the need for and benefits of a national learning health system and how PCORnet is conducting research with enhanced quality, speed, and efficiency in “real-world settings” to achieve such a system. The piece also mentions the ADAPTABLE study’s collaboration with ADAPTORS, a group of patient representatives who are shifting the role of patients in the research process from participant to partner, and how this collaboration creates an effective organizational vision that can be useful in addressing one of the nation’s most pressing public health problems: cardiovascular disease.

While these three pieces are an exciting achievement, we anticipate that PCORnet’s momentum will only continue to build. Be on the lookout for more mentions of our innovative Network in the months to come!

 

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.

PCORnet Blog

iConquerMS™ Members Revamp Recruiting Materials to Reflect Community Preferences

Author: Laura Kolaczkowski, Co-Principal Investigator of iConquer Multiple Sclerosis Patient-Powered Research Network (MS-PPRN).

Multiple Sclerosis (MS) Awareness Week (March 5-11th) is a weeklong national effort to increase awareness of MS, and provides an opportunity to examine how asking and listening to communities of patients can improve how we make connections between people living with chronic conditions and the research community. Finding the right way to make this connection is a key challenge for the partner networks within the National Patient-Centered Clinical Research Network (PCORnet), an innovative initiative of PCORI, which have a unique opportunity to engage people living with chronic conditions, such as those with MS, by connecting them to the research community. This guest blog examines one network’s experience of taking the guesswork out of the collateral development process by enlisting patients to help make their marketing materials more relevant to people with MS.


In response to requests from iConquerMS™ community members, the Multiple Sclerosis Patient Powered Research Network (MS PPRN) recently revamped promotional materials, images and message on our website. We were challenged by feedback to change our recruitment and engagement approach because the initial message that anchored our promotional materials regarding the importance of “Big Data” did not resonate with our target audience (people with MS). We also heard from many others that they could not identify or relate to the images nor the messaging on our website.  For example, our community members felt the stock images that we originally selected for promotional materials (see image below) have been spotted on many other websites and in printed materials on non-MS topics and, though they were a pleasant, smiling group of diverse people, our community members felt that they did not represent the multiple sclerosis population.

Patient community members in iConquerMS™ include talented people from diverse professional backgrounds.  We asked our engagement committee — which includes people living with MS who have publicity, advertising and marketing backgrounds — for ideas to reshape our message so that it would be meaningful and resonate with our community. Because we operate on a limited budget, they were also encouraged to develop those ideas into usable marketing materials. This special group picked up the challenge and so much more.

Be Part of the Cure” is the call to action our engagement committee identified as best suited to encourage people with MS to join iConquerMS™. This simple call to action replaces our previous lengthy explanations of the power of big data. This patient-led, ad hoc group then contacted members of iConquerMS and asked them to contribute photos. The stock images were replaced with images of people who are actual members of iConquerMS™.

For the main message, they crafted a simple display of information that resonates with all key stakeholders.  Instead of getting bogged down with lots of words that mean something to researchers but not necessarily patients, the message is concise as to who we are, what we are trying to do, and how the reader can help.

We often hear talk about the importance of learning from our mistakes, but when it comes time to sharing these missteps we tend to shy away from talking publicly about the error of our ways. When we were asked if we might write this blog for PCORnet about our own lessons learned, we agreed this is an excellent opportunity to perhaps save others from similar pitfalls.

Lesson learned? Consult your target audience early and often, and be willing to adjust according to their responses. We have much to learn from our patient partners and they can add value to every part of the process.

This critical step to include more MS patients into the marketing of iConquerMS™ should yield authenticity to our efforts and produce greater participation. Even when you know what you’re doing isn’t working, it can still be hard to change directions; resources and often egos are often attached to what has been previously done.  It took a giant leap of faith from the lead project team of iConquerMS and an open minded approach to turn this challenge into an opportunity to connect at a deeper level and trust the patient community to take the lead.

More about the iConquerMS™ network:
iConquerMS: Empowering Patients (Video)
Multiple Sclerosis Research Network Builds on Patient Input
When a Clinician Becomes a Patient

 

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 Partner Network Inspires Alzheimer’s National Summit and Catalyzes New Digital Tools for Alzheimer’s Research

The National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network (AD-PCPRN) recently helped shape a National Alzheimer’s Summit in Washington, DC. AD-PCPRN is one of 20 Patient-Powered Research Networks of the National Patient Centered Clinical Research Network (PCORnet), an initiative funded by the Patient Centered Outcomes Research Institute (PCORI). AD-PCPRN is harnessing the collaboration of patients, caregivers, and researchers to create a powerful ripple effect of momentum in an effort to drive patient-centered Alzheimer’s research.

On September 27, AD-PCPRN participated in the National Alzheimer’s Summit, a three-day event organized to bring together the best Alzheimer’s and dementia researchers. Because of its importance within PCORnet, Summit leaders sought out the guidance of AD-PCPRN’s Advisory Councils, which include patients and caregivers as well as experts in the fields of communications, registries and clinical trials, to catalyze a range of initiatives that are accelerating the development of effective treatments for Alzheimer’s disease and related dementias. Each of these initiatives are priority concerns for a core partner and lead organization within AD-PCPRN: UsAgainstAlzheimer’s (UsA2), a non-profit organization pressing for greater urgency from government, industry, and the scientific community in the quest for an Alzheimer’s cure.

UsA2 hosted the National Alzheimer’s Summit in Washington, DC as well as Diversifying the Race for a Cure, a pre-Summit pilot convening on disparities in Alzheimer’s care. The AD-PCPRN Councils were key advisers at both events, and the Councils specifically helped establish each programs’ objectives and agendas. Infused with AD-PCPRN’s dedication to jumpstart and transform research, engage diverse stakeholders, and energize a bipartisan movement for medical progress, the robust agenda of presenters included patients, caregivers, researchers, industry scholars, elected officials, former First Ladies, community organizers, and advocates.

During the Summit, UsA2 released compelling reports analyzing the Alzheimer’s drug pipeline and crystalizing Alzheimer’s future impact on Latinos. In addition, UsA2 launched the first Alzheimer’s Party Convention, a platform for policymakers to advance progress for effective treatments and policy to improve the lives of those with Alzheimer’s and their caregivers. Most importantly, it created a platform for the voices of those with Alzheimer’s or other dementias and their caregivers.

Highlights of the Summit are available online. For more information about the work of AD-PCPRN, click here. If you would like information about the 2017 National Alzheimer’s Summit or Diversifying the Race to a Cure, please contact UsAgainstAlzheimer’s Chief Operating Officer Sally Sachar at ssachar@usagainstalzheimers.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.

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 Announces 11 Collaborative Research Groups to Speed Insights to Patients

The National Patient Centered Clinical Research Network (PCORnet), a PCORI initiative, today announced the launch of 11 Collaborative Research Groups (CRGs) designed to catalyze new multi-network research. Each CRG team is composed of content experts from within the Network focused on generating engaging, high-priority research questions that will help patients and clinicians make informed healthcare decisions.

“Every week, if not daily, I have to look at a patient or caregiver and tell them that I hear them, and I understand their needs, but we simply do not have an answer,” said Tim Carey, PCORnet co-investigator, Mid-South Clinical Data Research Network, and member of the PCORnet Research Committee. “It is a stark reminder that we cannot be complacent—we must be impatient about uncovering insights that matter.”

In the below video, Tim explains more about how PCORnet’s CRGs are increasing the pace of research in an effort to quickly and efficiently incorporate clinical research findings into practice that will empower patients and their caregivers to make informed decisions.

One of the most compelling features of PCORnet’s CRGs is that they tap expertise from different disciplines, bringing a holistic perspective sorely needed in clinical research. The CRGs’ diverse perspectives will ensure PCORnet is examining the right questions in the right way to bring the answers that matter most to patients and caregivers.

PCORnet’s CRGs are doing just that: collaborating with advocates, partner networks, and funders early on to rapidly develop the most important questions and use PCORnet’s unique infrastructure. PCORnet’s CRGs are listed below; each is focused on bringing new insights to a specific therapeutic area or research method.

  • Autoimmune and Systemic Inflammatory Syndromes
  • Behavioral Health
  • Cancer
  • Cardiovascular Health
  • Diabetes and Obesity
  • Health Disparities
  • Health Systems, Health Policy and Public Health
  • Hospital Medicine
  • Kidney Health
  • Pediatrics
  • Pulmonary

Some of the CRGs may also contain Research Interest Groups (RIGs) that are dedicated to specific research areas. For example, the Cardiovascular Health CRG has specific RIGs for Women and Heart Disease, Hypertension and Congestive Heart Failure.

In addition to developing high-priority research questions, the CRGs are busy developing common data elements relevant to the CRG focus area for use in the Common Data Model.  Through these and other innovative efforts, the CRGs are working to advance the science of patient-centered outcomes and pragmatic research through innovative methods, and assisting the PCORnet Front Door with research requests.

“It is absolutely essential that we not only reduce the timing and cost of research, but also ensure we are conducting rigorous studies with results we can be confident about,” said Tim. “PCORnet’s CRGs are poised to drive progress on all of these fronts, and I am looking forward to seeing their power in action.”

 

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 Welcomes New Member to Research Committee

On Friday, December 16, the PCORnet Council, the main governing body of PCORnet, approved the slates for the Engagement and Research Committees, welcoming one new committee member and re-electing five others.

Marleah Dean Kruzel, PHD, a steering committee member for the American BRCA Outcomes and Utilization of Testing Patient-Powered Research Network (ABOUT), has joined the Research Committee. Marleah is an Assistant Professor in Health Communication at the University of South Florida. A BRCA2-positive patient herself, her research lies at the intersection of health, interpersonal, and applied communication.

Tom Carton and Barbara Kroner will continue to serve on the Research Committee. Cherie Binns, Michael Horberg, and Neely Williams will continue to serve on the Engagement Committee.

 

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 atwww.pcori.org.