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Managing personal health information in distributed research network environments
Christine E Bredfeldt1, Amy L Butani, Roy Pardee
1Mid-Atlantic Permanente Research Institute, Kaiser Permanente Mid-Atlantic States, Rockville, MD, USA. Christine.E.Bredfeldt@kp.org.
BMC Medical Informatics and Decision Making
|October 9, 2013
Summary
New tools enhance multi-site research by improving data security and privacy during data transfer. These resources help manage Protected Health Information (PHI) and ensure compliance with regulations like HIPAA.
Area of Science:
- Health Research Informatics
- Data Security and Privacy
Background:
- Multi-site health research collaborations are essential for studying rare outcomes, new interventions, and diverse populations.
- Transferring healthcare data between institutions poses significant risks to data privacy and security.
Purpose of the Study:
- To develop tools that support data security and privacy in multi-site research collaborations.
- To address the need for clear identification and protection of Protected Health Information (PHI) during data exchange.
Main Methods:
- A working group evaluated requirements for data privacy support tools.
- Two performance support tools were developed: a workplan template and a checklist.
- Tools aim to manage allowable PHI, identify HIPAA-protected data, and guide protection during transfer.
Main Results:
- The workplan template facilitates communication regarding multi-site programming details and potential PHI in outputs.
- The checklist assists site analysts in verifying that program outputs comply with research agreements regarding PHI.
- These tools streamline the process of exchanging research data securely.
Conclusions:
- The developed tools establish a formal workflow for multi-site programming.
- This workflow is designed to minimize the risk of accidental disclosure of Protected Health Information (PHI).
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