Fall 2017 Symposium: “Refining Privacy to Improve Health Outcomes”

Event Information:

The North Carolina Journal of Law and Technology (“JOLT”) 2017 Symposium, in conjunction with the Triangle Privacy Research Hub, will bring together leading experts in the field of privacy, health, and data to discuss how new technologies and data sources can improve health outcomes, while protecting individual privacy. The goal of the event is to propose specific law, policy and practice changes to promote the more effective use of data for health.

The event will be held on Thursday, October 26, 2017 from 1:00PM to 5:00PM in Chapel Hill at the Rizzo Center. The address is 150 Dubose Home Lane, Chapel Hill, NC 27517 and there will be signs directing patrons to the correct location.

SPACE IS LIMITED. If you are interested in attending please email Peter Kelly at se.ncjolt@gmail.com.

Symposium Schedule:

1:00 – 1:45 PM Opening & Keynote Remarks

1:45 – 3:00 PM

Panel Discussion: Secondary Use of Health Data

One of the key issues challenging the health research world is access to health data for non-patient care and secondary uses. Secondary use of health data, which focuses on increasing knowledge about disease and treatments and supporting public health and improving product development, has been shown to provide value to patients and customers by improving health outcomes. However, access to and use of health data for secondary purposes is limited–HIPAA requires covered entities to obtain explicit consent from patients (opt in/opt out) before utilizing or sharing data for secondary purposes, and much of the data contains potentially identifiable data which must be removed. While the average person generates over 1 million gigabytes of health-related data during a lifetime, researchers struggle to harness the value of this abundant health data without access to complete health datasets. What is the correct balance between consent, privacy, and secondary research? Can transparency, aggregation, anonymization, or encryption help encourage trust in secondary research?

  • Joan Krause, UNC Law (moderator)
  • Elizabeth Johnson, Wyrick Robins
  • Kathryn Marchesini, HHS
  • Martha Wewer, RTI International
  • Kenneth Park, IMS Health/Quintiles

3:00 – 3:30 PM


3:30 – 4:45 PM

Panel Discussion: Genomics, Precision Medicine, and Privacy

In order to effectively precision medicine, clinicians need to assess and understand a variety of complex data. A contributor to this complexity is a patient’s genetic makeup, which can help clinicians predict more accurately whether a treatment or prevention strategy will work for a particular group of people. In recent years, the rapid development and significant reduction in the costs of gene sequencing technologies has enabled substantial progress in precision medicine. However, genomic data warrants the highest level of privacy protections, because in comparison to other personal health information, genomic data can not only identify the patient, but can also reveal information about the patient’s past, present, and future generations. Can precision medicine be effective without precision genomics? How can we enhance precision medicine without risking genomic privacy violations?

  • Brenda Leong, Future of Privacy Forum (moderator)
  • Barbara Evans, Houston Law
  • John Conley, UNC Law
  • Kay Eron, Intel Corporation
  • Misha Rashkin, Helix

4:45 – 5:00 PM

Closing Remarks

Sponsored By:

  • Future of Privacy Forum
  • Triangle Privacy Research Hub
  • Intel
  • The Information Accountability Foundation
  • Duke Master of Management Clinical Informatics
  • Duke Science & Society