A Thoughtful Approach to Open Science: Sharing Sensitive HEAL Data

Contrary to popular belief, researchers working with intellectual property, at-risk populations, or other sensitive data types can still contribute to open science. Sharing sensitive data thoughtfully is critical to advancing many important areas of research, including the NIH HEAL Initiative^®’s effort to urgently stem the national pain and opioid use disorder public health crises. 

This month’s Fresh FAIR webinar will feature HEAL Steward Liezl Mae Fos introducing unique and less commonly addressed sensitive data types in HEAL research, followed by lightning talks from Drs. Bridget Freisthler, Elizabeth D’Amico, and Luana Colloca presenting how they have considered and made decisions around sharing results when working with sensitive data. Participants will also learn about resources relevant to sharing sensitive data. The webinar will conclude with a live Question and Answer session featuring presenters, as well as Drs. Daniel Dickerson and Anthony Juehne. 

Presenter Names and Bios:

• Liezl Mae Fos, MS, is a HEAL Steward in the Data Management Group at RENCI. Fos has 5 years of experience working in both industry-led and academia-focused clinical research trials. Working previously for a large contract research organization, she was involved in the management of several study sites within a given trial, ensuring that proper documentation and clinical procedures were followed. She has worked closely with PIs to ensure that study visits and other study-related tasks run smoothly and efficiently during her time as clinical research coordinator for a medical university. As a HEAL Steward, Fos integrates her background to support investigators in the HEAL ecosystem by providing guidance and strategy for data management.
• Bridget Freisthler, PhD, is a Professor in the College of Social Work at Ohio State University and the Principal Investigator of the HEALing Communities Study in Ohio. Dr. Freisthler’s research focuses on how situation, social, and location characteristics affect the use of child abuse and neglect. Specifically, she is interested in how microcontexts (e.g., where a person is during a particular event) shape behavior, such as parenting or substance use. These microcontexts might include where and with whom parents drink alcohol, use marijuana, or experience higher levels of stress; all of these may affect parenting behaviors. The goal of this research is to design, implement, and evaluate intervention strategies that reduce substance misuse and child abuse and neglect. Dr. Freisthler will speak about her experience sharing sensitive private/administrative data in a HEAL-funded study.
• Elizabeth D'Amico, PhD, is a senior behavioral scientist at the RAND Corporation and a licensed clinical psychologist. Dr. D'Amico is nationally recognized for her work developing, implementing, and evaluating interventions for adolescents and young adults. She has grants focused on prevention for substance use for urban Native American adolescents and young adults that integrate motivational interviewing with traditional practices, such as beading and Native American cooking. She is currently conducting a large clinical trial to address suicide prevention among Alaska Native young people in Alaska. Dr. D'Amico will speak about her experience sharing sensitive data in a HEAL-funded study working with tribal communities.
• Luana Colloca, MD, PhD, MS, is a Professor in Pain and Translational Symptom Science and Director of the Placebo Beyond Opinions Center at the University of Maryland School of Nursing. Dr. Colloca has conducted pioneering groundbreaking studies that have advanced scientific understanding of the psychoneurobiological bases of endogenous systems for pain modulation in humans. As a result, Dr. Colloca has developed an international reputation as a leading scientist for advancing knowledge of the neurobiological mechanisms of placebo and nocebo effects with a multifaceted approach including psychopharmacological, neurobiological, and behavioral approaches. Her research has been published in top-ranked international journals including Biological Psychiatry, Pain, JAMA, NEJM, and Lancet Neurology. Dr. Colloca will speak about her experience sharing sensitive genomic data in a HEAL-funded study.

Tags: public, webinar, data sharing, FAIR data, FAIR,  open science, sensitive data