Research Methods: Collaborating Globally to Make Traumatic Stress Research Data More ‎‎“FAIR”

Nancy Kassam-Adams and Krithika Prakash, FAIR Data Workgroup of the Global ‎Collaboration on Traumatic Stress

July 29, 2021

Editor’s Note: ISTSS is a founding partner in the Global Collaboration on Traumatic Stress

The FAIR Guiding Principles for scientific data stewardship state that data should be Findable, Accessible, Interoperable and Reusable (FAIR; Wilkinson et al 2016). In summary, the principles state that researchers should be able to find relevant data and datasets and have a clear means to gain (or request) access to those data, that data should be readable across various software systems (now and in the future), and that we should have enough information about specific variables and data collection methods to allow us to reuse those data. These principles are part of the growing global movement toward a more open and transparent science, across disciplines from astronomy to the social sciences. Being “FAIR” is not an all-or-nothing proposition; rather, FAIRness is a continuum. Making traumatic stress research data more FAIR can promote better science, enhance understanding of trauma impact and recovery, and ultimately benefit trauma-exposed individuals and communities around the world (Kassam-Adams & Olff, 2020). Recognizing the importance of these issues, the Global Collaboration on Traumatic Stress has undertaken FAIR data as its fifth “theme.”

For the traumatic stress field in particular, it is important to note that FAIR is not the same as “open.” Much of our research data will not be able to be openly and publicly available. However, most traumatic stress studies could ethically and practically make de-identified data accessible, following the principle of “as open as possible and as closed as necessary” (Landi et al., 2020).  The FAIR data principles also encourage researchers and other stakeholders to build in data management and data preservation practices that will make data easier to reuse, whether for replication or new analyses. We already have examples of the value of reusing and integrating data for cross-study analyses in our field, e.g., the work of the PTSD workgroup of the Psychiatric Genomic Consortium (Nievergelt et al., 2018) and other projects that have integrated and analyzed data from multiple studies and countries (DeHaan et al., 2020; Fried et al., 2018; Shalev et al., 2019).

What is the state of FAIR data practices in our field?

To date, most traumatic stress studies have not been designed with data preservation, sharing or reuse in mind, and there appears to be great variation amongst researchers in the extent to which we have integrated FAIR data principles into our work. Thus, an important first step is to understand the current state of traumatic stress researchers’ knowledge and practices regarding data sharing and reuse, as well as perceived benefits and challenges. To this end, the Global Collaboration is conducting a survey of traumatic stress researchers at all career stages. The survey is available in seven languages. It was adapted from a prior survey of researchers from a wide variety of scientific disciplines (Kim & Stanton, 2016; Kim & Yoon, 2017). We urge all StressPoints readers to complete the survey here.

Ongoing projects in this theme will create tools and resources that can facilitate FAIR data practices across the field of traumatic stress studies. For example, the Global Collaboration FAIR Data workgroup is now creating an online index of data resources relevant to traumatic stress and plans to develop a toolkit of resources to help researchers implement FAIR data practices across the research lifecycle—from study design and data collection to preserving and sharing one’s data. The Global Collaboration is also supporting ongoing work in data archiving and harmonization to enable integrative, cross-study analyses of traumatic stress research data. Two projects (one in child trauma and one in traumatic grief) are bringing together individual participant-level data from multiple studies, developing methods for harmonization across studies, and making these data available for use by other researchers. We welcome input and assistance from traumatic stress researchers in these efforts.

What can you do to help?

  1. Take the survey on data sharing and reuse.
  2. Add information about your relevant datasets to the FAIR Datasets index.
  3. Get involved in a FAIR Data workgroup. Learn more.

About the Authors

Nancy Kassam-Adams, PhD, is at the Children’s Hospital of Philadelphia and University of Pennsylvania and is a past president of ISTSS. Her research focuses on understanding how children and families respond to potentially traumatic events such as injury, violence and illness/medical experiences, and developing effective secondary prevention protocols for health care settings. She leads the FAIR Data theme of the Global Collaboration on Traumatic Stress, and the Child Trauma Data Archives.   
Krithika Prakash is currently a third-year doctoral student in the clinical psychology PhD program at Eastern Michigan University (EMU). Her primary research interests lie in understanding the short- and long-term implications of trauma and discrimination faced by marginalized and underserved communities. Krithika has an interest in developing clinical best practices and adapting treatments to be culturally sensitive for clients or patients from marginalized communities. More broadly, she believes that sound research involves meticulous theory-driven methodology, culturally sensitive data analysis and interpretation, and upholding principles of open science. Krithika is an international student from India. Following graduate school, she would like to take her experiences as a researcher and clinician and collaboratively develop sound, culturally sensitive trauma-based research in India.


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