Big Data & Data Sharing

Webinar Bundle: Big Data & Data Sharing

The Big Data & Data Sharing webinar bundle is made up of a curated selection of PRIM&R's recorded webinars, hand-picked to provide you with in-depth instruction on data security and big data research. Developed and presented by experts, the webinars in this bundle offer insight into some of the fundamental concepts and challenges in big data and data sharing. Webinar topics include IRB involvement in data security, ethical considerations of sharing genomic data, and best practices for data sharing.

Continuing Education

 Webinar viewers holding the Certified IRB Professional (CIP®) credential may apply continuing education credits from each webinar towards CIP recertification. This webinar bundle is eligible for a total of 7 continuing education credits. Learn More »

Included Webinars

Big Data Research: Practical Solutions to Emerging Challenges for IRBs

2016

Speakers: Betsy L. Draper, MBA, CIP and Sean Owen, CISSP, CAP, CRISC

Using case studies from SBER and biomedical research, presenters share best practices for how to review research protocols that either create or use large data sets, with a focus on maintaining the value of the data while protecting human subjects. Topic include:

  • Innovative recommendations for systemic institutional review—including data use agreements, memoranda of understanding, and data security review—to complement IRB review, and how to make the most of these collaborations at small, resource-tight institutions
  • The risk of re-identification after a research subject’s data is merged into a large data set and posted publicly after the study is completed
  • Best practices regarding informed consent and managing subject expectations in light of shifting cultural attitudes around anonymity and privacy
  • Considerations for academic and commercial ownership and use of large data sets, including distribution to the public and the use of pre-existing data in protocols

Participation in this 90-minute webinar counts as 1.5 CE credit hours.

Data Security Incidents: the Role of IRBs and Information Security

2015

Speakers: Teresa Doksum, PhD, MPH and Sean Owen, CISSP, CAP, CRISC

In this webinar, experts in information security and research ethics explain reporting requirements and regulatory definitions, define the roles of the IRB and information security department, and describe procedures to coordinate response to security breaches. By the end of this intermediate-level webinar, participants were able to:

  • List the information that study protocols should include to facilitate incident response
  • Classify common types of incidents based on regulations governing human subjects research and information security
  • Identify roles of IRBs and information security and determine courses of action in reporting data security incidents
  • Form effective working relationships between the data security department and the IRB

Participation in this 90-minute webinar counts as 1.5 CE credit hours.

Data Sharing in Genomics Research: Participant Attitudes and Ethical Issues

2012

Speakers: Stacey Donnelly, MPA and Bernard Lo, MD

Policies for genomic data sharing are likely to be relevant to anyone collecting biospecimens for future research. However, many institutions don’t know what those policies are, how to comply with them, how to address them, or how to discuss them in consent forms and consent processes. For pre-existing studies, determining whether data sharing is consistent with the original consent remains a challenge. Many older consent forms do not explicitly address data sharing, and consequently, it can be challenging to know how to assess them. In addition, genomic science is advancing rapidly and the issues relevant to data sharing are evolving along with it. During this transitional time, there is great uncertainty about how to deal with genomics and genomic data.

Topics include:

  • The current state and evolution of data sharing policy, including other relevant developments in federal policy
  • IRB issues, best practices, and informed consent
  • Results from a randomized study of consent for data sharing conducted at Baylor College of Medicine, including:
    • Preconceptions and evolving opinions on controlled access and open-access data release
    • Changes in preferences following changes in data sharing options

Participation in this 90-minute webinar counts as 1.5 CE credit hours.

Data Sharing in Research with American Indians and Alaska Natives: Informed Practices, Considerations, and Case Studies

2017

Speakers: Jyoti Angal, MPH, CIP, Deana Around Him, ScM, Amy Elliott, PhD, Lizabeth Malone, PhD, and Marcia O’Leary, RN

The use of secondary data in research leverages the resources invested in existing datasets to advance scientific discovery and improve health outcomes through novel analyses. It also raises new and important ethical considerations for protecting the rights and interests of individuals and communities whose data are included. American Indian and Alaska Native (AI/AN) tribes that participate in research are often interested in sharing their data when doing so will help answer important questions or contribute to improved child development or population health outcomes, and when appropriate protections are in place. The speaker panel for this webinar will comprise investigators and representatives from the Strong Heart Study, the AI/AN Head Start Family and Child Experiences Survey (AI/AN FACES), and the Safe Passage Study. Speakers will discuss their experience operationalizing data sharing agreements with their community partners and study participants. The discussion will highlight the risks and benefits of data sharing and present examples of informed practices for approaching such arrangements. The following topics will be discussed:

  • Conducting conversations about data sharing early in the research process
  • Informed consent and consent for secondary use of data and biospecimens
  • Ownership and de-identification of data
  • Restricted use data sets and criteria for gaining access
  • Data access committees
  • Considerations for children's data
  • Considerations for multisite research
  • Sharing research results with tribal stakeholders
  • Collaborating with tribal research review and regulatory systems
  • Building capacity for future research

Participation in this 90-minute webinar counts as 1.5 CE credit hours.

This webinar is free to all. Watch it here.

Maximizing Benefits to Research with Human Subjects Through Data Sharing

2015

Speakers: Stacey Donnelly, MPA and Bernard Lo, MD

During this webinar Bernard Lo, MD, discuss IOM (The Institute of Medicine) recommendations as they apply to those who review research with human subjects, and Stacey Donnelly, MPA, senior director of strategic operations and chief compliance officer at the Broad Institute, addressed data sharing in a research environment and the culture of data sharing at academic institutions. Topics include:

  • Balancing different interests of stakeholders to achieve a common goal
  • Suggestions for institutional review board (IRB) involvement in data sharing plans during reviews of original study proposals, particularly to protect research subjects
  • Challenges of incorporating this practice amid limited staff resources
  • The role of medical journalism in promoting data sharing

Participation in this 60-minute webinar counts as 1 CE credit hour.

Access Webinar Bundles

Webinar bundles are available to individual PRIM&R members at no cost. For a fraction of the cost of this bundle, become a member to watch the included webinars and gain dozens of other member benefits. 

Nonmembers can purchase individual or group access to this webinar bundle using the order form below. Each webinar is also availalbe individually. 

Individual nonmember rate: $710

Group nonmember rate: $1500

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