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Webinar: (10-2023) Considering the Ethical, Legal, and Social Implications of Digital Health Research

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Description


The use of digital strategies and tools is on the rise in health research. While technologies like wearable sensors and social network platforms hold promise for understanding health behaviors, these strategies for gathering data include ethical, legal, and social implications (ELSIs) that must be considered. By encouraging transparency and open discussion about the ethical and responsible conduct of digital health research, our hope is that the academic community is better prepared to recognize and mitigate related risks.

This session will provide an overview of how digital tools/strategies, including machine learning and artificial intelligence, are used in health research. We will then highlight novel strategies for identifying possible unintended ELSIs when developing and evaluating digital health studies. Attendees will be introduced to the Digital Health Checklist (DHC) and framework. With the use of case studies, attendees will apply the DHC with a goal of improving awareness of issues related to privacy, risk/benefit assessment and data management that can be used when developing or reviewing a research protocol and consent form. In addition, participants will learn to apply a more structured approach to assessing digital health research risks.

Time will also be reserved for attendee questions.

What will I learn?
After participating in this webinar, attendees will know or be able to:
  • Describe the roles and responsibilities of key stakeholders in the digital health ecosystem
  • Identify unique ethical, legal/regulatory, and social implications (ELSIs) that may arise for IRBs reviewing digital health research
  • Apply a digital health decision support framework to improve the ethical design and relevant review of digital health research protocols
  • Evaluate risks in terms of likelihood and impact
Who should attend?
This session is appropriate for HRPP/IRB leadership, institutional officials, those working in IRB/HRPP offices and IRB members/Chairs, as well as researchers who use or design digital health research.

Continuing Education
Webinar participants holding the Certified IRB Professional (CIP®) credential may apply 1.5 continuing education credits towards CIP recertification. Learn More »

Discounts available for groups of various sizes from a single institution!
  • Buy 4 get 1 free
  • Buy 12 get 6 free

To receive complimentary registrations, first register the paid registrants (e.g. if you’re using the buy 4 get 1 free discount, register the 4 paid individuals first) and then email onlinelearning@primr.org with a list of those paid individuals, as well as the name(s) and emails of those to receive complimentary registration.

Group discount requests must be received at least 24 hours before the event broadcast begins. Refunds or retroactive discounts are not available.

Access Interval
Access to live content will be available for 90 days after the recording is made available. After 90 days, access to the content will be removed, but users will retain access to any certificates of attendance earned. To earn a certificate, one must complete all required sections and complete the certificate section within the 90-day access period. After access has expired, users can purchase an additional 90 days of access.

If you prefer, you can find a paper registration form here. Please send the completed form to registration@primr.org.

*Please note that you cannot purchase this webinar on behalf of others. If you would like to register a colleague or a group, please fill out the paper form or contact onlinelearning@primr.org for an invoice

Contributors

  • Alan Card, PhD

    Alan Card is an Assistant Professor at the University of California, San Diego School of Medicine. His research tackles questions related to quality, safety, risk, and well-being in healthcare, with a particular focus on improving how healthcare organizations improve.

    He is a former Editor of the Journal of Healthcare Risk Management and the inventor of several patient safety risk management tools, including: The Active Risk Control Toolkit, the Generating Options for Active Risk Control Technique, the Lovebug Diagram, and the risk curve approach for risk matrices.

    Dr. Card holds a PhD from the University of Cambridge in England, an MPH from the University of South Florida, and is a Distinguished Fellow of the American Society for Health Care Risk Management. He also holds professional certifications in healthcare quality (CPHQ) and healthcare risk management (CPHRM).

  • Brian McInnis, Ph.D.

    My research investigates how values in public discourse translate into online system design and content moderation practices. As a theoretical lens I have applied century-old concepts of deliberation to develop methods of promoting specific values in public discourse, like responding to background materials and with topically relevant comments and questions. As system design inspiration, my research builds on crowdsourcing techniques for authoring original text (called crowd-writing systems). In practice, I conduct my research as a cycle: (1) Discover where and how people share their experiences of a specific civic issue; (2) Evaluate how system design plays into the ways that people engage with issues and each other; and (3) Identify the opportunities, barriers, and unintended consequences associated with technology policy making. The issues that I find most fascinating are those that cannot be feasibly deliberated in a physical space, such as fairness in online crowd labor markets, human protections in digital mental health. In September 2021, I joined the UCSD Herbert Wertheim School of Public Health and Human Longevity Science as a Postdoctoral Fellow in the ReCODE Health Center. I earned my PhD in Information Science from Cornell University, MPP from Vanderbilt University, and BA in Economics and History from UC Davis. Previously I have conducted policy research at the RAND Corporation and the National Center on Performance Incentive.

  • Camille Nebeker, EdD, MS

    Camille Nebeker is an Associate Professor with appointments in the UC San Diego Design Lab and the Wertheim School of Public Health. She is director of the UC San Diego Research Ethics Program and affiliated with the Institute of Practical Ethics. She co-founded and directs the ReCODE Health center, which provides education and consultation services to guide ethical practices in technology-supported health research. Dr. Nebeker applies a human centered design approach to shape ethical research practices (e.g., risk assessment, informed consent, return of results), which has led to development of decision support tools (see: Digital Health Checklist and Framework and Connected and Open Research Ethics platform). She serves as a member of the World Health Organization Digital Health Roster of Experts, American Association for the Advancement of Science Committee on Scientific Freedom and Responsibility, IEEE Organizational Governance of AI Working Group and the Society of Behavioral Medicine Digital Health Council. Dr. Nebeker’s research has received support from federal, foundation and industry sources including the NSF, NIH, Office of Research Integrity, RWJF and IBM. Publications related to her work are accessible via: https://escholarship.org/uc/recodehealth_publications.

October 31, 2023
Tue 1:00 PM EDT

Duration 1H 30M

This live web event has ended.

Support Contact
onlinelearning@primr.org