Cancer Consortium members can request access to adult oncology clinical patient data for research. This service is hosted through Fred Hutch’s Data Science Lab (DaSL) and its partners.
Researchers at Fred Hutch Cancer Center may request Fred Hutch patient data for research purposes if they have the proper approvals in place. For a review of what data are currently available for research use cases, see the Fred Hutch Patient Data for Research page in the Biomedical Data Science Wiki. To learn more about using data derived from healthcare sources for research, see the PHI and Research page.
The Data Science Lab (DaSL) is currently reviewing and fulfilling research data requests through this intake process. We partner with the Office of Translational Research (OTR) to fulfill requests from the legacy Caisis system.
How to Make a Request
In an effort to create a more streamlined process, we ask that you first fill out our intake form to provide some initial information about your needs, then set up a 20-minute call with Translational Analytics after filling out the form. This will allow us to help navigate your request and guide you to any helpful resources that might accelerate access to the data you need or help you develop your data request scope.
Once we review initial feasibility and timeline, we send your request to our Data Governance team to confirm alignment with applicable Fred Hutch policies around use of sensitive/confidential data. Working with Translational Analytics first will help the data governance review go as smoothly as possible.
Questions?
Please review the FAQ below. Contact DaSL Data Governance at datagovernance@fredhutch.org for questions about data governance and policy related to using Fred Hutch adult oncology clinical patient data for research. For questions about data availability and services, please contact Translational Analytics at analytics@fredhutch.org or fill out our intake form.
After I submit a request, when can I expect to hear back?
After you submit an intake form, we'll get back to you within 2 business days. At this point we review your project goals and feasibility. If you are seeking anything beyond aggregate data (e.g., patient counts to help determine feasibility), your request will also go through a governance review. After we determine we're able to fulfill your request, the time to completion will vary by project, from a few days to a few weeks, depending on the project deliverables and complexity.
Who should fill out the intake form?
We recommend that the project lead, PI, or person who will be analyzing the data fills out the intake form.
What documents will I need to provide?
The DaSL data governance team typically requests the following documents for review:
- Protocol
- IRB application or Application IRB Protocol Form
- IRB approval letter
- Waiver of consent and/or authorization supplement forms (if applicable)
- Record of HIPAA training
Once you fill out the Translational Analytics intake form, we will help you with the data governance review.
How do I request patient data for clinical purposes?
Data requests related to patient care delivery (hospital operations) and Fred Hutch quality metrics should be directed to Clinical Analytics at clinicalanalytics@fredhutch.org.
I'm already an Epic user. Can I use Epic's self-service tools to get the data I need for research?
In-Epic Cogito reporting tools, such as Reporting Workbench, Slicer Dicer, and Dashboards, should not be used for accessing individually identifiable patient data for research. SlicerDicer may be used for creating summary statistics or aggregate numbers of patients to help determine study feasibility. If you are interested in learning how to use SlicerDicer, please contact the Clinical Analytics group to set up a learning session.
I'd like to use other self-service analytics tools for research. How do I get access to these types of tools?
UW-affiliated researchers can access Leaf through UW ITHS. There are efforts underway to enable more self-service analytics for research at Fred Hutch. If you have questions about the availability of other self-service analytics tools, please email our Data Governance team or set up a Data House Call.
What about other pathways to obtain patient data for research?
Though multiple pathways exist, we recommend that Fred Hutch investigators looking for patient data start by filling out the intake form on this page. From there, we can help guide the investigator to the appropriate avenue for gaining access to patient data for research if Translational Analytics is unable to fulfill the request. For example, if we are not able to fulfill a request for research purposes, we may direct folks to UW’s Research Access to Patient Data (RAPiD) Portal. From that intake form, users can submit a RAPiD portal request to get support from UW Research IT to pull the data set for them which includes honest brokering the data set. If a user already has a data set pulled, but they only need Research IT to honest broker the data and perform/validate the de-identification check, then they can navigate to the Honest Broker Intake form for that support.