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PCORnet Best Practice Sharing Session – PCORnet Commons Tools for Electronic Consent Workgroup Webinar Series: Part 2. Best Practices
November 13, 2017 @ 12:00 pm EDT - 1:00 pm EDT
This is Part 2 of a webinar series hosted by the PCORnet Tools for e-consent workgroup on the PCORnet Commons. This webinar will present best practices, tips, and lessons learned for developing and implementing electronic consent. The e-consent workgroup is a collaborative space fostering innovation among those who are currently implementing or seeking to develop tools and strategies for obtaining electronic informed consent. This active group is open to all who are interested in seeking input on electronic informed consent tools under development, resources, and lessons learned.
The recording of first webinar in the series can be accessed here.
|Holly Peay, PhD, CGC, is a social scientist and a genetic counselor who leads bioethics initiatives within the Center for Newborn Screening, Ethics, and Disability Studies at RTI International. Dr. Peay is co-PI of the DuchenneConnect PCORnet PPRN. She is an investigator on the Early Check voluntary research screening program that is being implemented across the state of North Carolina. For the Early Check project Dr. Peay is leading the development and implementation of an electronic consent approach. Dr. Peay is also PI or co-PI on several other active studies with topics spanning clinical trial decision making, patient and caregiver treatment preferences, and public health surveillance. She is experienced in qualitative and quantitative research methods, decision support tools, patient-focused drug development, and community-engaged research approaches.|
|Erin Rothwell, PhD is an Associate Professor in the College of Nursing and Division of Medical Ethics and Humanities at the University of Utah, and is the Director of Tracking and Evaluation in the Center for Clinical and Translational Science funded by the National Center for Advancing Translation Science (NCATS). She also leads a multi-institutional and multi-disciplinary team of investigators addressing informed consent and patient decision making around ethical, legal and social implications for the storage and research use of residual dried blood spots from newborn screening using various e-consent and multi-media consent approaches as well as for decisions around cell-free DNA prenatal screening. In addition, she is the co-Research Director for the Utah NIH Center in Excellence in Ethical, Legal and Social Implications Research (UCEER) in Genetics and a member of the NCATS workgroup on informed consent. Recently, she received a grant to assess parental understanding and the growing use of pre-implantation genetic screening with in vitro fertilization among the general population. Finally, Dr. Rothwell has extensive experience in research ethics and teaches doctoral level courses in human subjects protections.|
|David Borasky is the Vice President, IRB Compliance for the five IRBs in the WIRB-Copernicus Group (WCG) and is responsible for quality and compliance activities. He has nearly 20 years of experience managing institutional review boards in a variety of settings including research institutes, global health organizations, academic medical center and independent IRB organizations. He has facilitated training activities on basic research ethics and IRB operations and management for IRBs, and has provided technical assistance to IRBs throughout North America, Africa and Asia. Mr. Borasky co-chairs the US Department of Health and Human Services Secretary’s Advisory Committee on Human Research Protections (SACHRP) Subpart A Subcommittee and serves on the board of directors for PRIM&R (Public Responsibility in Medicine and Research). In addition, he has served as a consultant for the US Office of Human Research Protections, the US Department of Energy, the World Health Organization and numerous institutions.|
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- Meeting Number: 856 399 845
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