Innovation & Research Practice

Lightning Talk: Research Abstract

Data Needs during Infectious Disease Outbreaks

Sunday, May 5
3:05 PM - 3:10 PM
Room: Columbus KL (East Tower, Ballroom/Gold Level)

Objectives : Biomedical libraries can play a vital role in managing health information during public health emergencies. Helping organizations be prepared is critical for response efforts on the part of health care providers and emergency responders. A literature review and interviews with federal and organizational partners will shed light on data needs and barriers during infectious disease outbreaks and address how librarians may provide assistance.


Methods : A search of the literature regarding data needs during infectious disease outbreaks was performed in Disaster Lit, PubMed, and Web of Science, with supplemental searching in Google; citations were managed in EndNote. Barriers to rapid data sharing were identified in the literature and used to curate interview questions. Additional questions include the exploration of librarian involvement to assist in the management of disaster data and discoverability. The Disaster Information Management Research Center (DIMRC) team provided a list of key agencies and staff to interview. Eleven interviews were conducted over the phone.


Results : Reoccurring themes surrounding data barriers were exposed. Awareness: work is being duplicated across organizations due to a lack of knowledge and coordination. Policy: data sharing policies and data use agreements take time to implement. Quality and timeliness: quality of data is a concern because standards are not widely adopted. Data shared may not be peer-reviewed due to a push to rapidly share, therefor this data should address limitations. Recognition: there is hesitancy to share data prior to publishing findings due to a fear of scooping. Additionally, many who reuse shared data fail to provide proper credit. Furthermore, there are often no promotional or tenure incentives to share data.


Conclusions : There are ways librarians can immediately assist with data sharing needs during outbreaks. First, libraries could offer research data management services. Secondly, libraries can provide toolkits for responders and researchers; these toolkits could include links to grey literature in the Disaster Lit® database, a summary of response efforts across organizations, tips for relationship building, data use agreement guidelines, available datasets and databases on the web, and instructions for proper data citation. Finally, librarians should remain up to date on current outbreaks and new trends; ProMED-mail, HealthMap, and the Disaster Outreach Lib listserv are useful resources. Having services and resources in place prior to an infectious disease outbreak will assist in decreasing barriers in data sharing and better allow researchers and responders a more rapid and efficient response.

Sarah C. Clarke, AHIP

Associate Fellow
National Library of Medicine
Bethesda, Maryland

Sarah Clarke, MSLS, AHIP is a 2018-2019 Associate Fellow at the National Library of Medicine. She is currently working on projects surrounding data science, open science, and computational reproducibility. She received her MSLS degree from Clarion University of Pennsylvania. While completing her degree, Ms. Clarke was employed as a contract librarian at the US Army Medical Research Institute of Infectious Diseases, where she provided reference support, performed literature searches, and managed interlibrary loan requests. Prior, she worked at the US Army Medical Research and Materiel Command’s Office of Research Protections where she worked on projects tracking international human use protocols, and managed the Volunteer Registry Database System. She has earned a Disaster Information Specialization through the Medical Library Association.

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Stacey J. Arnesen

Chief, Disaster Information Management Research Center
National Library of Medicine
Bethesda, Maryland

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Siobhan Champ-Blackwell

Librarian
National Library of Medicine/Disaster Information Management Research Center
Bethesda, Maryland

Siobhan Champ-Blackwell, MSLIS Medical Librarian at the National Library of Medicine, promotes and implements the disaster health information goals of the Disaster Information Management Research Center. She also manages the external communication tools of the project, including networking, use of social media, and partnership development.

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