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July 2017

PCORnet Best Practice Sharing Session – Using Narratives to Promote Engagement: The MyPaTH Story Project

July 11, 2017 @ 10:00 am EDT - 11:00 am EDT

This session will describe how the PaTH network has developed an archive of patient stories to support the development of people-centered research questions in PCORnet and facilitate patient engagement in patient-centered outcomes research. Discussion will include how patient input shaped the project, the logistics of story collection, a description of the data that accompanies each story, and ways in which the data can be used by PCORnet researchers. We will describe ongoing collaborations that facilitate introductions between story tellers and…

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June 2017

PCORnet Best Practice Sharing Session – Leveraging Social Media to Raise Awareness and Build Community

June 8, 2017 @ 11:00 am EDT - 12:00 pm EDT

With 81 percent of the U.S. population reporting owning a social networking profile in 2017, social media provides a great opportunity for patients and researchers to connect with each other, build communities, and raise awareness of patient-centered research. Achieving the most impact from a social media presence requires savvy on which channels to engage and how. Social media specialists from the PCORnet Patient Powered Research Network, Arthritis Power (AR-PoWER PPRN), and PCORnet’s first demonstration study, ADAPTABLE, will explore the opportunities…

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May 2017

Webinar: Getting Started with SMART IRB & the Online Reliance System

May 23, 2017 @ 4:30 pm EDT - 5:30 pm EDT

In response to the NIH’s Single IRB Policy, PCORnet is working in harmonization with NCATS, encouraging its collaborators to participate in the Streamlined, Multisite, Accelerated Resources for Trials (SMART) IRB Reliance Platform. The SMART IRB Online Reliance System is a unique tool that helps institutions establish and document single IRB review arrangements. By using this system: Investigators can create and submit requests to use a single IRB for their studies. Collaborating institutions can work together to identify a Reviewing IRB and track and document…

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Webinar: Implementing the SMART IRB Agreement

May 18, 2017 @ 2:30 pm EDT - 4:00 pm EDT

In response to the NIH’s Single IRB Policy, PCORnet is working in harmonization with NCATS, encouraging its collaborators to participate in the Streamlined, Multisite, Accelerated Resources for Trials (SMART) IRB Reliance Platform. Description: Your institution has joined the SMART IRB Agreement, now what? Join us for one of our upcoming SMART IRB webinars, which will provide an overview of how to implement the SMART IRB Agreement for studies at your institution. Speaker: Nichelle Cobb, PhD, Chief Regulatory Operations Officer for Implementation for SMART IRB,…

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PCORnet Best Practice Sharing Session: Measuring an Epidemic: Using EHR Data to Track Trends in Opioid Prescribing

May 4, 2017 @ 12:00 pm EDT - 1:00 pm EDT

The liberalizing of chronic opioid prescribing in the early 1990s was soon followed by unforeseen harm to individuals and communities. The subsequent rise in opioid addiction and overdose deaths has been widely described in the medical literature and lay press, and is now producing a backlash of recommendations and policies designed to make prescribing safer.  We will review the history of this problem, its complex relationship with chronic pain, and prior efforts to use various data sources to track pain…

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April 2017

PCORnet Best Practice Sharing Session: ABOUT GAP Tools

April 4, 2017 @ 11:00 am EDT - 12:00 pm EDT

ABOUT Network’s GAP 360 and GAP Tools process is a 7-step process for patient-centered research. Dr. Friedman will describe the GAP Tool process and discuss hereditary cancer research gaps identified through it. Speaker: Sue Friedman is Founder and Executive Director of FORCE. A veterinarian by training, Sue founded FORCE in 1999 after her diagnosis at age 33 with breast cancer caused by a BRCA2 mutation. Sue founded FORCE to fill the information void for individuals and families with hereditary cancer,…

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March 2017

PCORnet Best Practice Sharing Session: The Brain Health Registry Caregiver and Study Partner Portal: An Alzheimer’s PPRN Tool to Facilitate Patient-centered Clinical Research

March 7, 2017 @ 12:00 pm EDT - 1:00 pm EDT

The Brain Health Registry Caregiver and Study Partner Portal is a novel, innovative online tool for recruitment, engagement, assessment, and education of caregivers.   We will describe the data collected so far using the Caregiver Portal and its potential impact on dementia research, including ways that it can facilitate Alzheimer’s disease clinical trials and improve screening of older adults for cognitive decline in various healthcare settings.  We will also discuss the ways that the Caregiver Portal can be adapted to engage…

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February 2017

ADAPTABLE Facebook Live Broadcast

February 13, 2017 @ 11:30 am EDT

February is heart month—a time where we raise awareness about heart disease and how people can prevent it. Heart disease is the leading cause of death for men and women in the United States. Every year, 1 in 4 deaths are caused by heart disease. The good news is that heart disease can often be prevented when people make healthy choices, manage their health conditions, and take medications as appropriate. The second ADAPTABLE Facebook Live event will be broadcasted from…

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January 2017

PCORnet Best Practice Sharing Session: Transformational Approaches to Achieving Health Equity through Engaged Research

January 31, 2017 @ 1:00 pm EDT - 2:00 pm EDT

For biomedical research to improve health broadly, we must 1) ensure diversity in studies, 2) address mistrust in research, particularly among racial/ethnic minorities, 3) increase health literacy, and 4) employ participant-centered study design and dissemination. All of these goals are achievable through Community Engaged Research. This webinar examines components of diversity and provides a review of engaged research approaches needed to address disparities. Speaker: Consuelo H. Wilkins, MD, MSCI, is a physician, biomedical researcher and current Executive Director of the…

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November 2016

PCORnet Best Practice Sharing Session: Becoming a Brand Ambassador for PCORnet

November 3, 2016 @ 12:00 pm EDT - 1:00 pm EDT

As the public launch of the National Patient-Centered Clinical Research Network, PCORnet, nears, every one of us who has had a hand in building the network is taking on an important new role: we must each serve as a PCORnet advocate, actively sharing the story of who we are, why we are here, and how PCORnet can facilitate efficient, trustworthy clinical research. Please join us on Thursday, Nov. 3 from 12-1 p.m. ET for a Best Practice Sharing Session focused…

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