The following post was written by an RDAP 2021 Summit Scholarship recipient. Scholarships were prioritized for those from under-represented groups, first-time RDAP attendees, early career professionals, and current students. Each recipient was asked to write a brief post on their conference experience.
I became a reference and instruction librarian at Himmelfarb Library a year ago, my first full-time position as a medical librarian. As I gain familiarity with my responsibilities and with course content, I struggle to incorporate critical information literacy and data literacy concepts into teaching. I am trying to radically change my idea of what teaching looks like and to engage in change-making at the nexus of biomedical and information sciences. I aim to encourage conversations around how we know what we know.
Conversations in classrooms are a start. As speakers throughout the 2021 Research Data Access & Preservation (RDAP) Summit described, radical change requires consideration of consent and context, connection with communities, and critical thought.
With data widely available in large volumes and in new places, strategies are emerging to address informed consent. Focus groups with representative members of communities can inform practices and research, and automated options are being considered for big social data, as found on Facebook and Reddit (Mannheimer, 2021). When considering the reuse of data, which can add value and increase the impact of a dataset (Smith, 2021), consent language needs to be broadened to anticipate new and unique future uses.
While the importance of data sharing and reuse is increasingly recognized, it is still crucial to ensure that consent is freely given, reversible, informed, enthusiastic, and specific (FRIES) (Sutherland, 2021). Broadened consent language to enable data sharing and reuse seems incompatible with the FRIES model of consent. Professional communities, research consultants, and educators must approach this conflict with critical thought and conscious awareness.
Continuous reuse, resharing, and “uncritical reproduction” can further separate data from the context, and the trauma, in which it was created and thereby perpetuate inherent bias (Sutherland, 2021). Information professionals can use descriptions to highlight biases and explain how depictions can be harmful (Sutherland, 2021). Consideration of data in context, with consciousness of biases in collection, interpretation, and presentation, illuminates shortcomings, opportunities, and obligations for changing how data is collected, labeled, and presented.
Conversely, too much context, either in big social data or small segments of a research population, enables re-identification of participants (Mannheimer, 2021, Leif et al., 2021). Knowing when and how much context to provide is another pressing question.
Connecting with communities to develop contexts for presenting and using data is vital. Communities can better describe personal experiences and research aims. Researchers can collaborate with community members to identify which data to collect and the most appropriate data labels, metadata, descriptions, and depictions (Leif et al., 2021).
The 2021 RDAP Summit presentations and chat conversations motivated participants to continue raising consciousness and engaging in radical change. Critical conversations are emerging in professional spheres and in classrooms (Exner, 2021) Students are challenging researchers and practitioners to consider how we know what we know (Institute for Healing and Justice in Medicine, n.d.).
The 2021 RDAP Summit inspired new ideas for discussion on the how and who of research data collection and analysis. I will use these questions to encourage critique among medical students of how we know what we know. Ultimately, I hope the conversations from the 2021 RDAP Summit can be extended to my classrooms, encouraging future researchers to examine the consent process and the labels they use in data collection and providing future practitioners with a better understanding of how to apply evidence to individual patient cases. I look forward to sharing my experiences with other information professionals, librarians, and educators.
Exner, N. (2021, March 10). Data Consultations, Racism, and Critiquing Colonialism in Demographic Datasheets. 2021 RDAP Summit.
Institute for Healing and Justice in Medicine. (n.d.). Institute for Healing and Justice in Medicine. https://www.instituteforhealingandjustice.org/
Leif, S., Gofman, A., Gunderman, H., & Exner, N. (2021, March 10). Do I have to be an “other” to be myself? Nonbinary Gender in Taxonomy, Data Collection, and through the Lifecycle. 2021 RDAP Summit.
Mannheimer, S. (2021, March 10). Supporting responsible research with big social data by connecting communities of practice. 2021 RDAP Summit.
Smith, V. (2021, March 11). A Sensitive Data Toolkit for Researchers: Supporting Sensitive Data Sharing in Canada. 2021 RDAP Summit.
Sutherland, T. (2021, March 10). No! Thinking About Critical Refusal as Data Practice. 2021 RDAP Summit.