Data sharing for public health research: A qualitative study of industry and academia

Authors

  • Pamela Anne Saunders Georgetown University School of Medicine
  • Erin E. Wilhelm Georgetown University
  • Sinae Lee Georgetown University
  • Elizabeth Merkhofer Georgetown University
  • Ira Shoulson Georgetown University

DOI:

https://doi.org/10.1558/cam.v11i2.18310

Keywords:

academia, attitudes, biomedical research, data sharing, medical products, qualitative methods

Abstract

Data sharing is a key biomedical research theme for the 21st century. Biomedical data sharing is the exchange of data among (non)affiliated parties under mutually agreeable terms to promote scientific advancement and the development of safe and effective medical products. Wide sharing of research data is important for scientific discovery, medical product development, and public health. Data sharing enables improvements in development of medical products, more attention to rare diseases, and cost-efficiencies in biomedical research. We interviewed 11 participants about their attitudes and beliefs about data sharing. Using a qualitative, thematic analysis approach, our analysis revealed a number of themes including: experiences, approaches, perceived challenges, and opportunities for sharing data.

Author Biographies

  • Pamela Anne Saunders, Georgetown University School of Medicine
    Pamela A. Saunders received her PhD from Georgetown University in Sociolinguistics and is currently an Associate Professor in the Departments of Neurology and Psychiatry at Georgetown University School of Medicine. Her research examines communication, aging, and Alzheimer's disease. Publications include articles on doctor/older patient communication and medical education for communications and selfreflection for medical students. She has received funding from the Alzheimer’s Association and National Institute on Aging to study communicative coping behaviors.
  • Erin E. Wilhelm, Georgetown University
    Erin E. Wilhelm received her MPH from George Washington University and is currently Project Director of the Center of Excellence in Regulatory Science and Innovation and Instructor in the Department of Pharmacology and Physiology at Georgetown University. Her research interests include data sharing, traumatic brain injury, HIV, cardiovascular disease, and the impact of climate change on human health.
  • Sinae Lee, Georgetown University
    Sinae Lee is a doctoral candidate in the Department of Linguistics at Georgetown University. She is currently working on her dissertation, tentatively entitled Quantitative and Qualitative Approaches towards the Language of Washington, DC: Vowels and Narratives. She has also been exploring the social meaning/interactional functions of creaky voice among DC residents.
  • Elizabeth Merkhofer, Georgetown University
    Elizabeth Merkhofer has an MA in Language and Communication from Georgetown University. Her research interests include language in use and linguistics corpora. She has examined the use of Twitter to collect large corpora to study ‘singular they’, using computational methods to organize and analyse her data. Her thesis included perspectives from ethnographic and discourse-analytic to large-scale datasets.
  • Ira Shoulson, Georgetown University
    Ira Shoulson received his MD degree from the University of Rochester and is currently professor of Neurology, Pharmacology, and Human Science and Director of the Program in Regulatory Science and Medicine at Georgetown University. His research interests include data sharing, clinical trials of neurodegenerative disorders (Huntington, Parkinson and Alzheimer diseases), genetic discrimination, and traumatic brain injury. He has authored over 300 publications.

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Published

2015-08-17

Issue

Vol. 11 No. 2 (2014)

Section

Articles

License

copyright Equinox Publishing Ltd.

How to Cite

Saunders, P. A., Wilhelm, E. E., Lee, S., Merkhofer, E., & Shoulson, I. (2015). Data sharing for public health research: A qualitative study of industry and academia. Communication and Medicine, 11(2), 179-187. https://doi.org/10.1558/cam.v11i2.18310

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