All posts by Patty McAdams

PCORnet Members to Impact AMIA Joint Summits on Translational Science

Many PCORnet colleagues will be at the AMIA Joint Summits on Translational Science this week in San Francisco, CA.  The summits will foster interactions between three informatics communities: translational bioinformatics, clinical research informatics and informatics implementation. To make networking with your PCORnet colleagues easier, refer to this list of sessions featuring PCORnet leaders

PCORnet-led Sessions at AMIA Joint Summits on Translational Science

Date & Time Session Number  & Type Session Title Speakers
Mar 28, 2017

1:30 pm – 3:00 pm

S18: Panel Is an Algorithm Just an Algorithm? How to Define Clinical Concepts for Use in Comparative Safety and Effectiveness Distributed Research Networks.

 

Jeffrey Brown (Presenter), Harvard Pilgrim Health Care Institute, PCORnet Coordinating Center
Robert Ball (Presenter), Food and Drug Administration
David Carrell (Presenter), Group Health Research Institute, PORTAL CDRN
Bradley Hammill (Presenter), Duke Clinical Research Institute, PCORnet Coordinating Center
Scott DuVall (Presenter), VA Salt Lake City Health Care System, pSCANNER CDRN
Mar 29, 2017

8:30 am –10:00 am

IIT07: Panel Implementing Record Linkage Solutions in the PCORnet Clinical Data Research Networks Jiang Bian (Presenter), University of Florida, OneFlorida CDRN
Abel Kho (Presenter), Northwestern University, CAPriCORN CDRN
Russ Waitman (Presenter), University of Kansas, GPC CDRN
Xiaoqian Jiang (Presenter), University of California San Diego, pSCANNER CDRN
Shaun Grannis (Presenter), Regenstrief Institute, GPC CDRN
Toan Ong (Presenter), University of Colorado Denver, PEDSnet CDRN
Mar 29, 2017

10:30 am –12:00 pm

S29: Panel Data Fitness-for-Use: A Method to Maximize Utility of Poor-Quality Data? Jeffrey Klann (Presenter), Harvard Medical School, SCILHS CDRN
Daniella Meeker (Presenter), University of Southern California Keck School of Medicine, pSCANNER CDRN
Marc Rosenman (Presenter), Northwestern University, CAPriCORN CDRN
Shawn Murphy (Presenter), Massachusetts General Hospital, SCILHS CDRN
Mar 29, 2017

10:45 am – 11:00 am

S27: Podium Presentation Session title: Phenotyping Methods

Presentation title: Developing Computable Phenotypes for Pediatric Chronic Conditions in PEDSnet

Levon Utidjian (Presenter), The Children’s Hospital of Philadelphia, PEDSnet CDRN
Ritu Khare, The Children’s Hospital of Philadelphia, PEDSnet CDRN
Hanieh RAZZAGHI, The Children’s Hospital of Philadelphia, PEDSnet CDRN
Amanda Dempsey, Children’s Hospital Colorado, PEDSnet CDRN
Michelle Denburg, The Children’s Hospital of Philadelphia, PEDSnet CDRN
Christopher Forrest, The Children’s Hospital of Philadelphia, PEDSnet CDRN
Charles Bailey, The Children’s Hospital of Philadelphia, PEDSnet CDRN
Mar 29, 2017

2:00 pm – 2:15 pm

S32: Podium Presentation Session title: Data Quality

Presentation title: Exploring Completeness in Clinical Data Research Networks with DQe-c

Hossein Estiri (Presenter), Harvard Medical School, SCILHS CDRN
Kari Stephens, University of Washington, pSCANNER CDRN
Jeffrey Klann, Harvard Medical School, SCILHS CDRN
Shawn Murphy, Harvard Medical School, SCILHS CDRN
Mar 29, 2017

2:30 pm – 2:45 pm

S32: Podium Presentation Session title: Data Quality

Presentation title: Needs-Driven Data Completeness Assessment for Clinical Research

Jeffrey Klann (Presenter), Massachusetts General Hospital, SCILHS CDRN
Vijay Raghavan, Columbia University, NYC-CDRN
Chunhua Weng, Columbia University, NYC-CDRN
Sarah Weiler, Harvard Medical School, SCILHS CDRN
Kenneth Mandl, Boston Children’s Hospital, SCILHS CDRN
Shawn Murphy, Partners Healthcare System, SCILHS CDRN
Mar 29, 2017

5:00 pm – 6:00pm

Poster Session 2 Board 27 – Needs-Driven Data Completeness Dashboard in a Multi-Site Research Network Jeffrey Klann (Presenter), Massachusetts General Hospital, SCILHS CDRN
Vijay Raghavan, Boston Children’s Hospital, NYC-CDRN
Sarah Weiler, Harvard Medical School, SCILHS CDRN
Kenneth Mandl, Boston Children’s Hospital, SCILHS CDRN
Shawn Murphy, Partners Healthcare System, SCILHS CDRN
Mar 30, 2017

8:30 am – 10:00 am

IIT10: Panel Data Extraction for National Data Sharing Initiatives: Process Pragmatics and Comparison/Commonality of Pipelines Patrick Ryan (Presenter), OHDSI
Roy Pardee (Presenter), Group Health Cooperative, PORTAL CDRN
Jon Puro (Presenter), OCHIN, ADVANCE CDRN
Mar 30, 2017

10:30 am – 12:00 pm

S40: Panel Distributed querying across PCORnet: Early lessons Jeffery S. Brown, PhD (moderator and panelist), Harvard Pilgrim Health Care Institute, PCORnet Coordinating Center

Jessica Sturtevant, MPH (panelist), Harvard Pilgrim Health Care Institute, PCORnet Coordinating Center

Jon Puro, MPH-HA (panelist), OCHIN, ADVANCE CDRN

Kathleen M. McTigue, MD, MPH, MS (panelist), University of Pittsburgh Medical Center, PaTH CDRN

Mar 30, 2017

1:30 pm – 3:00 pm

Presentation time: 2:15 pm – 2:30 pm

S41: Podium Presentation Session title: Interoperability and Knowledge Representation

Presentation title: Strategic Assessment and Planning for the PCORnet Common Data Model

Ania Berchuck (Presenter), Duke Clinical Research Institute, PCORnet Coordinating Center

Michael Kahn, University of Colorado, PORTAL CDRN
Shelley Rusincovitch, Duke Clinical and Translational Science Institute, PCORnet Coordinating Center
Daniella Meeker, University of Southern California Keck School of Medicine, pSCANNER CDRN
Shawn Murphy, Massachusetts General Hospital, SCILHS CDRN
Ravi Bhosale, University of Florida, OneFlorida CDRN
Keith Marsolo, Cincinnati Children’s Hospital Medical Center, ImproveCareNow PPRN and PEDSnet CDRN
Michael Matheny, Vanderbilt University Medical Center, pSCANNER CDRN
Russ Waitman, University of Kansas Medical Center, GPC CDRN
Rachel Hess, University of Utah, PaTH CDRN

Getting to the Heart of Patient Needs: PCORnet’s Health eHeart Alliance PPRN & PaTH CDRN Find New Ways of Managing & Preventing Cardiovascular Disease

The American Heart Association, the Centers for Disease Control (CDC) and the Heart Foundation all mark February as a month to boost awareness and promote research that brings patients and providers practical solutions for the nation’s leading cause of morbidity and mortality: cardiovascular disease. According to the CDC, someone in the U.S. has a heart attack every 42 seconds, and about 610,000 Americans die from heart disease each year. Many PCORnet networks are busy leveraging PCORnet’s vast network and unique infrastructure in different ways to address cardiovascular disease. Two of these networks are the Health eHeart Alliance and PaTH: Towards a Learning Health System in the Mid-Atlantic Region.

In its efforts to drive cardiovascular disease research, Health eHeart Alliance (a PCORnet Patient-Powered Research Network (PPRN)) aims to gather more data about heart health from more people—including individuals who are healthy, those who have heart disease, and even patients with untreatable heart disease—than any research project has done before. With over 90,000 patients across all 50 states currently registered for its network, it’s off to a promising start. This initial success is due in part to its patient-led steering committee, which ensures the patient has a voice in recommending Health eHeart’s research questions and areas of focus. The Health eHeart Alliance is currently enrolling patients for its Health eHeart Study, which aims to develop new and more accurate ways to predict heart disease based on measurements, behavior patterns, genetics, and family and medical history. The network is devoted to making sure each participant’s voice is heard through all stages of research. With essential people-centric processes in place, along with new technology, user-friendly apps, and at-home data collection, Health eHeart makes it easier than ever to make a difference in cardiovascular research.

Another PCORnet partner network stamping out cardiovascular disease is PaTH. PaTH (a PCORnet Clinical Data Research Network (CDRN)) studies diverse populations and focuses on three specific areas of research: Healthy Lifestyles and Weight, Idiopathic Pulmonary Fibrosis, and Atrial Fibrillation. By linking electronic health record data across its six diverse healthcare systems, PaTH develops convenient survey methods that can be used to let patients share their perspectives on health topics with their healthcare teams, all while ensuring patient privacy. For example, primary care patients and individuals who have undergone or are considering bariatric surgery answer surveys of relevance to their cardiovascular health, including ones on diet, physical activity, smoking, and medication adherence. PaTH has also standardized data elements that can inform cardiovascular research, such as electrocardiogram (EKG) parameters, and is working to share insights from this process within PCORnet’s Cardiovascular Health Collaborative Research Group. By developing key tools to increase stakeholder engagement and patient participation, including the MyPaTH Story Booth in response to patients’ desire for a quiet, safe space to share their unique health experiences, as well as an online crowdsourcing tool, PaTH is able to answer the questions and concerns that matter most to the communities it serves.

Although Health eHeart and PaTH are distinct organizations, the two networks are both partners in PCORnet’s ADAPTABLE demonstration study. The study focuses on aspirin, a critical over-the-counter medication that has been taken by millions of people ever since German chemist Felix Hoffman was issued a U.S. patent for aspirin on February 27, 1900. Although researchers conclude that daily doses of aspirin are beneficial to patients with cardiovascular disease, it is not known which dosing quantities are most beneficial and to what extent. ADAPTABLE is answering that question with a three-year pragmatic clinical trial that compares the effectiveness of two different daily doses of aspirin widely used to prevent heart attacks and strokes in individuals living with heart disease. This study is putting patients in the driver’s seat and trailblazing the next era of patient-centered clinical research by involving Adaptors—patient representatives who work alongside researchers in all aspects of a trial, including designing the protocol, consent form, study portal, and study materials, in the research process. The Health eHeart Alliance supports the Adaptors, and PaTH is one of the CDRNs enrolling for ADAPTABLE.

Health eHeart Alliance and PaTH aren’t the only PCORnet initiatives conducting cardiovascular research. Among others, both LHSnet and pSCANNER are also PCORI-funded networks making significant progress in understanding and advancing cardiovascular research. Be on the lookout for more on these networks in the coming months!

 

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.

Determining the Path Forward for ADAPTABLE and Pragmatic Research

Patient leaders, study investigators, and operations and research staff gathered recently to discuss ideas and strategies for making the ADAPTABLE (Aspirin Dosing: A Patient-centric Trial Assessing Benefits and Long-Term Effectiveness) study a success. Read this summary for a snapshot of the engaging discussions and lessons learned from the kick-off meeting. As a PCORI-funded PCORnet demonstration study, ADAPTABLE is an emerging model for patient engagement and enabling pragmatic research through electronic screening, consent, and follow-up.

ADAPTABLE Study Patient Partners, Clinicians, and Researchers at the Kick-off Meeting
ADAPTABLE Study Patient Leaders, Clinicians, and Researchers at the Kick-off Meeting

Two PCORnet Colleagues Named Finalists in Health 2.0 Global Retrospective Awards

Terry_Sharon_HeadshotKenneth Mandl, MD

The premier organization for showcasing and catalyzing health technology, Health 2.0, has reinforced PCORnet’s position at the forefront of health innovation by selecting two of our colleagues as finalists for its Global Retrospective Awards. Sharon Terry, co-principal investigator, PCORnet Coordinating Center and principal investigator, Community-Engaged Network for All (CENA) Patient Powered Research Network (PPRN) and Kenneth Mandl, principal investigator, Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS) Clinical Data Research Network (CDRN) have been named finalists for the award in its “Top Patient Activists” and “Top Industry Leaders” categories, respectively. The awards represent yet another feather in the cap of the National Patient-Centered Clinical Research Network, PCORnet, which was founded in 2014 as an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI) to improve the nation’s capacity to conduct clinical research.

The award, which honors outstanding achievements in health technology over the past 10 years, is in recognition of Health 2.0’s 10-year anniversary successfully driving innovation. The finalists were determined by polling a vast network of health technology stakeholders to determine the top influencers in four categories: Industry Leaders, Patient Activists, Technology Companies, and Health Care Organizations. All of the finalists, including Sharon and Ken, were showcased and invited on stage at Health 2.0’s 10th Annual Fall Conference this week in Santa Clara, CA.

You can read the full finalist announcement by clicking here. Congratulations, Sharon and Ken!

 

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

We’re All In This Together: Building Trustworthiness with People, Clinicians and Health Systems

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

For decades, the clinical research community has been approaching its goals as an independent force, like a rowboat with one paddle and a single rower on a quest down the river. If we wanted an answer, we rowed toward it, and if the answer proved difficult to attain, we simply rowed harder—and yet, even with all of that effort, we still found ourselves often going in circles with little or no progress.

Thankfully, today PCORnet offers a new approach to clinical research. We know that as long as we, as researchers, are working independently, we are never going to achieve our goals with the speed, quality or agility we seek. Because it turns out that the answer was never to work harder in the first place; it was to invite more people into the boat. People bring a unique perspective to research right from the start—from determining what questions to ask, to study design, to what health outcomes matter most. In the video below, I explain how patients can get involved and be engaged in their care.

PCORnet promises an incredible new era of clinical research—but we cannot begin to make progress until we have established trust. And trust, as we all know, is earned.

That is why I am thrilled to participate in the Building Trustworthiness in PCORnet public webinar on September 16, 2016 from 1:00 pm to 2:00 pm ET. This webinar is led by the people who seek answers to health issues. We will be bringing together patients, participants, caregivers, clinicians, industry, community and advocacy groups, researchers, and the public to start to ask, “How is PCORnet trustworthy in clinical research? What more can the network do? What does it have to learn?” and “How will PCORnet facilitate authentic engagement in research?” In the video below, I describe in greater detail what we are seeking at our Building Trustworthiness events.

PCORnet is about making clinical research people-centered and people-driven, as well as inviting all the voices of the community to share input. This is not lip service; it is quite real, and the stakes are quite high. For this reason, you will also hear from Neely Williams, a patient advocate and administrator for the Community Partners Network; Jennie David, former patient advisory co-chair for ImproveCareNow; and Annesa Flentje, assistant professor at the University of California in San Francisco. Together, we will explore what we can do as a network to transform PCORnet research to a trustworthy enterprise.

Please join me on September 16 for this important webinar. Together, we can begin earning the trust of patients, health systems and clinicians to ultimately drive better outcomes for all. We are all in the same boat, so let’s figure out what it takes to paddle together.

To learn more about our goals with our Building Trustworthiness events, check out our dedicated web page.

Use of Electronic Health Records, Patient Reported Outcomes, and the Common Data Model to Transform Clinical Trials

Adrian Hernandez, MD, MHS, Co-Principal Investigator for the PCORnet Coordinating Center and Director of Health Services  and Outcomes Research at Duke Clinical Research Institute spoke recently to Clinical Leader magazine on leveraging electronic health records (EHRs), patient reported outcomes, and the PCORnet Common Data Model in the ADAPTABLE (Aspirin Dosing: A Patient-centric Trial Assessing Benefits and Long-Term Effectiveness) Study.

PCORI is investing over $300 million into a clinical research network that will unite patients, clinicians, health systems, and EHRs,” says Dr. Adrian Hernandez, associate director of the Duke Clinical Research Institute. “The network itself has medical information and data on over 100 million subjects, and the patient EHRs are mapped to the PCORnet Common Data Model (CDM), which essentially organizes data into a standard structure. That network will make ADAPTABLE the first pragmatic clinical trial to use the network. The trial will select patients via their EHRs, reach out to them electronically, consent them electronically, and then follow up with them electronically.”

ADAPTABLE  is comparing the effectiveness of two daily doses of aspirin  widely used to prevent heart attacks and strokes in individuals living with heart disease.  Every year, over 720,000 Americans suffer heart-attacks and 380,000 die of coronary artery disease (CAD). While new therapies for CAD are needed, an increased use of aspirin is believed to have a positive impact on the rates of death and disability. Unfortunately, the dose of aspirin that would result in the lowest risk of bleeding events has not been determined. The main objective of the ADAPTABLE study is to identify that optimal dose of aspirin.

Click here to access the complete interview in the Clinical Leader.

The ADAPTABLE study is funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (Contract Number: ASP-1502-27079). ADAPTABLE is the first demonstration project to be conducted through PCORnet, the National Patient-Centered Clinical Research Network. PCORnet is a PCORI-funded initiative designed to improve the nation’s capacity to conduct comparative clinical effectiveness research. More information about PCORnet can be found here.

PCORnet leader shares real-world evidence insights at Bipartisan Policy Center panel

The Duke Clinical Research Institute Director of Health Services and Outcomes Research and Co-Principal Investigator for the PCORnet Coordinating Center Adrian Hernandez, MD, MHS, was recently invited to participate in a Bipartisan Policy Center (BPC) roundtable focused on advancing the generation and use of real-world evidence.

The BPC, a nonprofit organization devoted to bipartisan solutions to questions of public policy, hosted the meeting at its headquarters in Washington, D.C. on June 23.

At the crux of the discussion was a new report issued by the BPC entitled Using Real World Evidence to Accelerate Safe and Effective Cures. The report expands on the recommendations in BPC’s July 2015 report, Advancing Medical Innovation for a Healthier America, and proposes four key recommendations for modernizing the drug development process through the use of real-world evidence. Continue reading PCORnet leader shares real-world evidence insights at Bipartisan Policy Center panel

Researchers Discuss How One Aspirin Study Can Transform the World of Clinical Trials

Duke Clinical Research Institute researchers discussed how one of the largest pragmatic clinical trials in history has the potential to transform clinical research at this year’s annual meeting of the Drug Information Association (DIA) in Philadelphia. The DIA meets every year to bring together key thought leaders and innovators from across all disciplines involved in the discovery, development, and life cycle management of health care products.

Adrian F. Hernandez, MD, MHS, Director of Health Services and Outcomes Research, and Lesley Curtis, PhD, Director of the Center for Pragmatic Health Systems Research, spoke during separate sessions about their progress with the ADAPTABLE (Aspirin Dosing: A Patient-centric Trial Assessing Benefits and Long-Term Effectiveness) study.

Continue reading Researchers Discuss How One Aspirin Study Can Transform the World of Clinical Trials

PCORI Guest Blog Explores the Role of Caregivers in Alzheimer’s Research

As new treatments become available, researchers should include the caregiver’s perspective in tests of those therapies because it is often the caregiver who administers the treatment and ensures compliance with medications. A new PCORI guest blog features the National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network also known as the Alzheimer’s Patient Powered Research Network (PPRN) and the vital role of caregivers in Alzheimer’s research.

As noted in the blog, when partnering with researchers, caregivers can shed light on issues that would improve their, and the care recipients’, quality of life, taking into account what may not be quantified in research. While researchers tend to focus on the patients’ cognitive processes, such as counting and puzzle solving, caregivers are more interested in improving the care recipients’ functioning, such as their ability communicate effectively or participate in family and social gatherings.

The primary aim of the Alzheimer’s PPRN is to connect patients, caregivers, and researchers focused on developing, conducting, and disseminating patient-centered dementia research. Consider joining  and learn how the network engages patients and caregivers in a public webinar on June 28th.

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

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