All Trainings and Presentations Resources

FORCE HBOC Research Study Search Tool Webinar

Published by Sue Friedman | updated on March 1, 2018

This webinar is a how-to guide for patients to use Facing Our Risk of Cancer Empowered (FORCE) hereditary cancer research study search tool. The tool matches patients with an inherited mutation to prevention, detection, quality of life and other research studies enrolling patients like them. This is a direct-to-consumer research matching strategy. Read more

iConquerMS: MS Minority Research Engagement Survey

Published by Adrianna Evans | updated on March 1, 2018

This presentation discusses the MS Minority Research Engagement Survey, conducted by the iConquerMS PPRN in collaboration with the Accelerated Cure Project. This survey investigated why people belonging to minority groups have lower participation in MS studies. Although work has previously been done related to other diseases, this survey looked at MS research participation specifically. Use this presentation to learn more about the results of their survey or methods to apply to a survey of your own. Read more

PRIDEnet: Clinician-Patient Role Play Scenarios

Published by Jordan Capizola | updated on February 6, 2018

“Role Play Scenarios” are training materials developed by co-directors Dr. Juno Obedin-Maliver and Dr. Mitchell Lunn, based on their clinical expertise and practice with gender and sexual minorities, and likely informed by additional research. Read more

Mid-South CDRN: Clinical Data Research Networks (CDRN) 101

Published by Adrianna Evans | updated on January 24, 2018

This presentation provides an overview of CDRNs and how they use health data. This presentation can be used to learn more about CDRNs, their projects, and how they use their data. The presentation is used for in-person informational sessions with researchers and research staff at University of North Carolina at Chapel Hill (part of Mid-South CDRN) and: Covers basic concepts of how health data is used for research and what CDRNs do Is designed to broadly talk about CDRNs Prior to each session  registrants receive survey so presenters can better prepare to address questions during the presentation. Read more

NIH: Clinical Trial Requirements for Grants and Contracts

Published by Joanna Ball | updated on August 30, 2017

From the National Institutes of Health Website: "NIH is launching a series of initiatives that are rolling out in 2017-2018 to enhance the accountability and transparency of clinical research. These initiatives target key points along the whole clinical trial lifecycle from concept to results reporting. Learn more about these changes and how they will affect your research." Read more

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

Published by Joanna Ball | updated on November 13, 2017

Kathleen McTigue, MD, MPH describes how the PaTH Network has developed the MyPaTH Story Project, 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. The presentation describes how patients helped shape the project, the data that accompanies each story, and how the data collected can be used by researchers. To continue the dialogue about how patient stories can enrich your research and practice, follow the Commons Community Conversations group forum. Download the presentation slides and view the presentation using the links below. PCORnet BPSS Slides (PDF) BPSS Presentation... Read more

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

Published by Joanna Ball | updated on November 13, 2017

Social media specialists Joseph M. Coe, MPA from the PCORnet Patient Powered Research Network, Arthritis Power (AR-PoWER PPRN), and M. Patricia McAdams, MS from PCORnet’s first demonstration study, ADAPTABLE, explore the opportunities and obstacles for leveraging social media in a network, including best practices and case studies to enhance understanding. The session covers how to use metrics to inform channel strategy and content, how collaborations and partnerships can help reach more people, and offers guidelines, best practices, and useful tools and tips. PCORnet BPSS Slides (PDF) BPSS Presentation Recording (below) [video width="480" height="360" mp4=""][/video] Be sure to join the ongoing discussion about... Read more

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

Published by Joanna Ball | updated on November 13, 2017

Speakers John Muench, MD, MPH and Thuy Le, MPH, both of OCHIN discuss the liberalizing of chronic opioid prescribing in the 90s was soon followed by unforeseen harm to individuals and communities. Muench and Le review the history of the rise in opioid addiction and overdose deaths,  prior efforts to track pain medication prescriptions, and current efforts to organize the ADVANCE Clinical Data Research Network electronic health record data to more easily describe prescribing pattern changes that follow interventions at national, state, and clinic levels. Download the presentation slides above and listen to the recorded webinar on Read more

Best Practice Sharing Session: ABOUT Network GAP Tools

Published by Joanna Ball | updated on November 13, 2017

ABOUT Network’s GAP 360 and GAP Tools process is a 7-step process for patient-centered research. Dr. Sue Friedman describes the GAP Tool process and discusses how hereditary cancer research gaps are identified through its use. Download the slide deck above (click “Download Resource”), or view the presentation. Read more

Best Practice Sharing Session: The Brain Health Registry Caregiver and Study Partner Portal from The Alzheimer’s PPRN

Published by Joanna Ball | updated on November 13, 2017

The Alzheimer’s PPRN describes their use of the Brain Health Registry Caregiver and Study Partner Portal in this PCORnet Best Practice Sharing Session. The online tool facilitates people-centered health research by assisting with recruitment, engagement, assessment, and education of caregivers. Dr. Michael W. Weiner, MD, Dr. Ronald C. Petersen, MD, PhD and Dr. Rachel L. Nosheny, PhD discuss the data collected using the Caregiver Portal and its potential impact on dementia research as well as ways the portal can be used to engage caregivers and study partners within and outside the PCORnet community. Download the slide deck above (click the "Download... Read more