Battling Zika with Open Data Nicole Strayhorn Associate

Battling Zika with Open Data Nicole Strayhorn Associate Fellow, 2017 -2018 National Library of Medicine National Institutes of Health U. S. Department of Health & Human Services

Who Am I? Atlanta, GA 8 Years of Experience in Libraries Research Interests Disaster Information Food Deserts Health Disparities 4 Academic Libraries MS 3 Federal Libraries Information 3 Law Libraries BA 1 Children’s Hospital Family Library Geography Women’s Health Data Visualization 2

Agenda �Open Data �Case Study: Zika Virus �Methodology �Results �Future 3

What is Open Data? 4

Open data definition Please visit: http: //opendatahandbook. org/guide/en/what-is-open-data/ 5

Why is open data important for disasters and public health emergencies? 6

Open data is used to gain situational awareness 7

Open data can help communities prepare for and respond to disasters and public health emergencies

Open data is used to track spread of diseases

Where is this open data? 10

Types of disasters and public health emergencies

Zika Virus Outbreak 2015 -2016 12

Zika Virus Timeline Zika virus (ZIKV) is a mosquito-borne virus originally discovered in Uganda A sudden rise in microcephaly among newborn babies and Guillain -Barré syndrome among adults coincided with the Zika virus outbreak 2015 -2016 2015 1947 Feb 1, 2016 The Zika virus outbreak was declared a Public Health Emergency of International Concern by the WHO Zika surfaced in Brazil but quickly spread through South America, Central America, the Caribbean, and North America 13

World Map of Areas with Risk of Zika Please visit: https: //wwwnc. cdc. gov/travel/files/zika-areas-of-risk. pdf 14

Data Needs During Outbreak �Patient demographics and location information �Number and list of counties, states, countries with confirmed and suspect Zika cases �Modes of transmission �Symptoms �Results of any testing �Mosquito surveillance reports �Climate/weather �Vaccine development (Florida Health Department, 2017) 15

Research Questions �Who is involved in this kind of research, i. e. organizations? �What are the data needs of stakeholders/organizations working on public health emergencies? �Where do they deposit their data? What are the sources of open data? �How was the data used? �What are the barriers to discovering and accessing data for disasters and public health emergencies? �What efforts are already underway for data sharing and open data in public health emergencies? 16

Methodology 17

Commit to Data Sharing 18

Data Sharing Policies Organization/Institution Data Sharing Policy Url Suggested Repositories Bill and Melinda Gates Foundation https: //www. gatesfoundation. org/How-We-Work/General-Information/Open. Access-Policy/Page-2#UNDERLYINGDATAGUIDELINES Wellcome Trust https: //wellcome. ac. uk/what-we-do/our-work/open-research Figshare PLOS http: //journals. plos. org/plosone/s/data-availability#loc-recommendedrepositories Dataverse Dryad Digital Repository Figshare Zenodo Dryad Digital Repository Figshare Harvard Dataverse Network Open Science Framework Zenodo NIH https: //www. nlm. nih. gov/NIHbmic/nih_data_sharing_policies. html 17 Division-specific data sharing policies 73 data repositories curated by NLM Nature https: //www. nature. com/sdata/policies/repositories Dryad Digital Repository figshare Harvard Dataverse Network Open Science Framework Zenodo 19

Open Data Sources Repository Description Surveillance data Clinical data Pathogen genome data Case reports Summa ry results Downloada ble Format This Git. Hub repository has numerous datasets CDC Epidemic Prediction Initiative - Zika Data Repository based on multiple locations including confirmed X X X CSV PDF Zika Open-Research Portal X X X XLS CSV JAVA R PDF Python cases of microcephaly, cases of zika, compiled bulletins, and other reports. Version 1 was created Feb 29, 2016. This portal was created in response to the declaration of the Zika outbreak. Researchers can make their data freely available to others. Zika Cumulative Cases PAHO WHO This is an aggregated list of suspected and confirmed cases of Zika in North America and South America from late 2016 to January 2018. X XLS PDF fig. Share Several articles related to Zika were published through PLOS. They have partnered with figshare to improve data access at PLOS. X XLS CSV PDF

How is Zika open data used? 21

Real time tracking of zika virus evolution

Zika modeling

Future Research �Data Quality �Preservation of data; broken links �Explore new data filters in Pub. Med �Interview researchers to understand how they decide where to place their data �Identify challenges in collecting data during disasters and public health emergencies �Non-traditional data such as social media and reports 24

Acknowledgments �Siobhan Champ-Blackwell, Project Sponsor �Stacey Arnesen �Colette Hochstein �Alicia Livinski, NIH Library 25

NLM Associate Fellowship Program This research was supported in part by an appointment to the NLM Associate Fellowship Program sponsored by the National Library of Medicine and administered by the Oak Ridge Institute for Science and Education.

Questions? 27