Before crafting a research proposal, investigators can learn what data is available, how to request its use and how to calculate a potential study’s risk to patient privacy.
Identify Available Data
The Precision Medicine Analytics Platform Portal, a new online resource available to all Johns Hopkins Medicine employees, helps investigators get started with the Precision Medicine Analytics Platform (PMAP). Among the tools available is a catalogue that lists patient datasets available for precision medicine research. Examples of patient data include:
- 20,000 tables from Epic
- Disease registries managed by Johns Hopkins experts
- Epidemiologic data such as disease risk by location
- MRI images
- Pathology lab reports
- Laboratory values and test results
- Primary care annual progress reports from Johns Hopkins Community Physicians
- Written progress notes from physicians about patient care
- Patient and provider correspondence from MyChart
Researchers can use the portal to find IRB-approved language to use in their electronic Institutional Review Board (eIRB) application. Data analysts at the Core for Clinical Research Data Acquisitionand PMAP can help pull preliminary, anonymous data to gauge study feasibility for grant applications, provide estimates for the number of patients with data that may meet study requirements and add new data regularly to existing study datasets.
A risk tiers matrix helps investigators identify the level of risk their study poses to patient privacy. Projects that use PMAP and the Secure Analytics Framework Environment (SAFE) for storage and analysis will most likely be categorized as tier A, and will probably not require additional security review. A risk calculator is available to further help researchers understand their study’s risk to privacy.