Author: Christina Pressl, MD, Clinical Scholar and Investigator for New York City Clinical Data Research Network (NYC-CDRN), one of 13 Clinical Data Research Networks (CDRNs) funded by PCORI. Christina received her MD from the Medical University of Graz, Austria in 2009. She then spent the following three years of residency in Radiology at the General … Continue reading A Monumental Step Toward Understanding and Diagnosing Prosopagnosia (Face Blindness)
Erin Gilroy, BS, was a Senior Research Coordinator in the Center for Clinical Epidemiology and Biostatistics at the University of Pennsylvania’s Perelman School of Medicine and Study Project Manager for the PCORnet DINE-CD Demonstration Study which began in March 2016. Gilroy is now attending nursing school. Most of us know the popular saying, “Don’t reinvent … Continue reading PCORnet Infrastructure Helps DINE-CD Demonstration Study Avoid “Reinventing the Wheel”
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 … Continue reading What Should I Eat? (The Burning Question in Crohn’s Disease)
Authors: Rainu Kaushal, MD, MPH, is the chair of the Department of Healthcare Policy and Research, executive director of the Center for Healthcare Informatics and Policy (CHiP), executive director of the Health Information Technology Evaluation Collaborative (HITEC), and the Nanette Laitman Distinguished Professor of Healthcare Policy and Research at Weill Cornell Medicine. She is the principal investigator … Continue reading Health Systems & PCORnet: Working Together to Answer Crucial Questions
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 … Continue reading iConquerMS™ Members Revamp Recruiting Materials to Reflect Community Preferences
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?
PCORnet had a fantastic experience at this year’s Datapalooza, as it was an opportunity for us to showcase how we are harnessing the power of data and unique partnerships to conduct important health research faster, more efficiently, and at lower cost than was previously possible.
PCORnet collaborators Adrian Hernandez, MD, MHS, FAHA, Keith Marsolo, PhD, and Russ Waitman, PhD, spoke at Health Datapalooza. Hernandez gave an overview of PCORnet. Marsolo presented PCORnet’s model for sharing data. Waitman contributed to a session describing how variability in clinical information across electronic data sources hinders the exchange, collection, and analysis of health data.
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?
Scores of people — patients, researchers, and many other stakeholders — participated in the Building Trustworthiness in PCORnet meeting in Washington, DC, on March 28 and 29 to work on advancing a new model of research that is rooted in trust, honesty, and true partnerships between researchers and patients . Here are some key takeaways from that event.
People-powered research is what’s needed to drive changes in research and health care. If people engage in health research the same way that they engage with other industries, with the same passion that they make decisions about books, music, and cars, then people themselves will power research forward.