The Women’s Health Initiative Clinical Coordinating Center (WHI CCC) developed a Virtual Data Enclave (VDE) to expand access to selected confidential data for those who meet approved criteria. The VDE allows Investigators with an approved manuscript or ancillary study proposal to remotely access and analyze data on a secure server located at the CCC. Access to the VDE will be granted to selected investigators for the purpose of increasing the knowledge gained from the WHI resource. Users of these data are expected to respect the confidentiality of participant information and the tremendous investment of NHLBI and the WHI investigators in developing this resource by using it in accordance with all WHI policies. Access to these data may be terminated by the CCC at any time if the user fails to abide by the data protections outlined in the Data Use Agreement. Access to data in the VDE is based on the requirements of the specific manuscript or ancillary study proposal. Data in the VDE do not include direct identifiers (e.g., name, social security number). Investigators using the VDE are able to view but not print or save data, files, tables, or screen shots to their local computers. CCC staff will review and redact as necessary any files requested to be transferred outside of the VDE to ensure they meet WHI confidentiality requirements prior to releasing them to the investigator.
Participant name, residential street addresses, phone numbers, and Social Security Number are not available in the VDE.
The standard VDE fee is $3,000. The fee covers the creation, management and regulatory compliance of your account. Additional charges may be necessary for studies requiring additional review, services, or access. Considerations include the data to be accessed, the timeline, and the amount of CCC support needed.
Please refer to The WHI Virtual Data Enclave User Guide.
Who can have access to the VDE? Any investigator with an approved manuscript or ancillary study proposal, with local IRB approval, and who has signed the necessary agreements can access the VDE.
What data can I access? Data currently available on the VDE includes all WHI data currently available on the WHI website, Medicare data for years 1991-2016 (updated annually approximately 15 months after the end of the calendar year), and some confidential WHI data, such as geocoded addresses, other information on geographical location (e.g., zip codes), and calendar dates (e.g., enrollment dates). Because of the confidentiality protections required for Medicare data, projects requiring linkage of address history or geospatial information with Medicare files are not allowed.
I’m not sure which specific Medicare or WHI files I need – any suggested resources?When developing a proposal and/or completing the intake form, consult www.whi.org for details on WHI data documentation and www.resdac.org for CMS file descriptions, data documentation, variable lists, and SAS code.Can I link additional data to the WHI data? It depends on the data. This requires additional discussion in advance with the CCC. What statistical software is available in the VDE? SAS, STATA, and R are available in the VDE.
What if I need other software? Installing other software in the VDE is not supported.
How long will it take to get my account set up? Once approvals are in place, we typically will provide your account information within one week. Access will be granted for one year.
How will the access work? You will access the VDE using the Remote Desktop Connection feature in Microsoft Windows and the username, password and server location provided by the CCC.
Can I access the VDE using a Mac? Yes. There is a free download available for Macs that allows you to access the VDE using Remote Desktop Connection. How long will it take for the CCC to review my “take away” files? The CCC will try to review and provide your output within one week, however this will depend in part on the volume of your files.
How will I get my files? Depending on the content and size of the files, they may be emailed or transferred via a secure file transfer site.
Can I create data files to take out of the VDE? While this is not currently supported, it is possible that a data file with all protected information removed could be released. Consult the CCC to discuss the feasibility and cost.
How much will it cost? The standard VDE access fee is $3,000, which covers the creation, management and regulatory compliance of your account. Additional charges may be necessary for studies requiring additional review, services, or access.
What if I haven’t finished my project at the end of the one year of access? Please contact the CCC with an extension request and justification (e-mail Lindsey Bull at firstname.lastname@example.org).
The WHI program is funded by the National Heart, Lung, and Blood Institute, National Institutes of Health, U.S. Department of Health and Human Services.
© 2021 Women’s Health Initiative. All rights reserved