Informatics research using social media, such as Facebook and Twitter, is a new frontier. Issues of privacy, IRB oversight and regulation and consent are still very much being debated. Some of this work is qualitative and some is quantitative and many studies are both. The purpose of this panel and webinar sponsored by the Evaluation and People and Organizational working groups is to explore the topic of Human Subjects using this kind of data with a panel of presenters that include: 2 researchers in the field, 1 IRB representative, and an editor of a qualitative journal.
After participating in this activity, the learner should be better able to:
- Identify the key IRB review processes relevant to Social Media research
- Discriminate Regulatory principles, such as confidentiality relevant to research using Social Media
- Evaluate potential Human Subjects challenges relevant to different types of social media research
- Explore future policy implications for AMIA
1. Mike Conway, PhD, University of Utah, Department of Biomedical Informatics
2. Rupa Valdez, PhD, Department of Public Health Sciences, University of Virginia
3. Caren Frost, PhD, MPH, College of Social Work, University of Utah
4. Janice Morse, PhD, RN, FAAN, College of Nursing, University of Utah
Mike Conway is an Assistant Professor in the Department of Biomedical Informatics at the University of Utah. Over the last several years, his research has focused on the application of natural language processing techniques to problems in population health using a variety of data sources, including electronic health records, news texts, and – salient to this webinar – social media.
Rupa Valdez, PhD is Assistant Professor of Biomedical Informatics at the University of Virginia. Her research combines methods from Human Factors Engineering, Informatics, and Cultural Anthropology to characterize and design interventions to support patients’ self-management practices. She serves as chair of POI at AMIA and as chair of the Health Care Technical Group for the Human Factors and Ergonomics Society.
Dr. Caren Frost is the Director of the new Center for Research on Migration & Refugee Integration for the University of Utah and a Research Professor at the University of Utah’s College of Social Work. She chairs the Refugee Women’s Committee for Utah, and works with a number of refugee women’s groups to identify speakers for workshops on women’s health. She is a qualitative researcher with expertise in ethnographic and phenomenology as methods for research. Her research expertise allows her to capitalize on mixed method frames emphasizing the importance of adding qualitative components to inform data collection and analysis. As Co-Chair of the Institutional Review Board at the University of Utah, Dr. Frost provides expertise in social and behavioral science methods.
Janice Morse, PhD (Nurs), PhD (Anthro) is a Professor and Barnes Presidential Chair, College of Nursing, University of Utah, and Professor Emeritus, University of Alberta, Canada. Her research contributions are developing the Praxis theory of suffering and comforting, fall prevention (the Morse Fall Scale is used internationally), and advancing qualitative and mixed-methods research. She has edited Qualitative Health Research (QHR), and Global Qualitative Nursing Research, and was founding editor of the International Journal of Qualitative Methods (IJQM). Her publications include Principles of Mixed-Method Designs (Left Coast Press/Routledge), Qualitatively-driven Mixed-method Designs (Routledge), Preventing Patient falls (Springer) and several qualitative methods texts. In 1997, she founded the International Institute for Qualitative Methodology (IIQM), directing a network of 8 international hubs and 115 Universities, supporting training for QHR and mentoring qualitative researchers globally. She was the recipient of the 5th Sigma Theta Tau Episteme Award, and Hall of Fame, and has honorary doctorates from Australia and Canada.