JHM Clinical Data Access

Researchers from across JHU that are outside of JHM HIPPA covered entities (e.g. JHSPH, Whiting School of Engineering, Homewood Campus Schools, and APL) play an important role in many research projects involving JHM patient data. HIPPA and Common Rule Regulations impact what data these researchers can see and under what circumstances. This site provides guidance on how JHSPH researchers can gain access to JHM patient data while remaining in compliance with legal requirements, data security, and management best practices.

How To	Obtain or create a Data Specification describing the data to be used in the study. If requesting data from a JHM Enterprise Clinical System, contact the Core for Clinical Research Data Acquisition (CCDA) to request a Data Specification to include in the IRB application. If requesting data from an IRB-approved JHM research registry, contact the PI for the registry to request a data specification Submit the protocol to the appropriate IRB (e.g. JHUSOM eIRB or JHUSPH PHIRST) Follow additional steps as needed depending on the type of data requested Follow IRB approval Contact the CCDA to obtain data
Resources	JHURA Brown Bag on access to JHM data recording Policy Manuals: JHM: Johns Hopkins Medicine Data is patient- or member-related data stored in Johns Hopkins Medicine clinical enterprise systems. Data Trust policies and guidelines govern the sharing of JHM patient data to support research and operations. JHM data may be shared across JHU or may be shared outside of JHU in many circumstances. https://intranet.insidehopkinsmedicine.org/data_trust/sharing-data.htm FAQ’s: https://www.hopkinsmedicine.org/institutional_review_board/guidelines_policies/guidelines/access_to_patient_data_for_research_faqs.html FAQ: Data Trust Review of Research and Quality Data Requests
Contacts	For questions about JHM patient data access please reach out to datatrust@jhmi.edu.
Related Links	Data Collection Tools

We are always working to provide our faculty with current precise content. If you have brief suggestions to help us improve this page, please comment below. For more extensive modifications please connect with us at BSPH.research@jhu.edu.