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.
Date: December 15, 2015
Authors: Joe Selby, MD, MPH; Rachael Fleurence, PhD; Adrian Hernandez, MD, MPH; Peter Margolis, MD, PhD; Richard Platt, MD, MSc; Sharon Terry, MA
Two years ago, PCORI began an ambitious journey to find a faster, less expensive, more powerful way to conduct comparative clinical effectiveness research (CER). That’s when our Board of Governors approved an initial $100 million investment in PCORnet, the National Patient-Centered Clinical Research Network. The goal: work with patients, researchers, clinicians, and health systems leaders to build and run a network using standardized electronic health record information, from multiple delivery systems covering tens of millions of patients, to conduct research addressing the real-world needs of patients and those who care for them.
Date: December 10, 2015
Author: Matthew Roe, MD, ADAPTABLE Principal Investigator, Duke University
A clinical trial that proposes to enroll 20,000 patients with a budget of less than $1,000 per participant is sure to raise eyebrows in the research world. But even before it enrolled its first participant, the ADAPTABLE trial has broken new ground in clinical research—by drawing on the wisdom of patients, doctors, and researchers in designing the trial itself.
Date: August 18, 2015
Authors: Rachael Fleurence, PhD, Program Director, CER Methods and Infrastructure, PCORI and Joe Selby, MD, MPH, Executive Director, PCORI
Obesity is at epidemic levels in the United States. About 30 percent of American adults are considered obese, with 5 percent severely obese, and among adolescents (ages 12-19), 20 percent are obese.
Date: August 17, 2015
Authors: Adrian F. Hernandez, MD, MHS, Director of Outcomes and Health Services Research, Duke Clinical Research Institute
Trust is central to the relationship between patients and their clinicians. It’s also essential to the relationship between patients and researchers if patients are to fully engage in clinical research.