Managing personal health information in distributed research network environments

BMC Medical Informatics and Decision Making

Technical Advance

Sandy Padmanabhan¹  Gwyn Saylor²  Paul Hitz³  Roy Pardee⁴  Amy L Butani⁵  Christine E Bredfeldt⁶ 

[1] C-V Sight, Shrewsbury, MA, USA;Center for Health Research, Kaiser-Permanente Northwest, Portland, OR, USA;Essentia Institute of Rural Health, Duluth, MN, USA;Group Health Research Institute, Seattle, WA, USA;HealthPartners Institute for Education and Research, Bloomington, MN, USA;Mid-Atlantic Permanente Research Institute, Kaiser Permanente Mid-Atlantic States, Rockville, MD, USA;

关键词: HIPAA;    Protected health information;    Distributed research;    Privacy;    Security;   

DOI  :  10.1186/1472-6947-13-116

 received in 2013-06-03, accepted in 2013-09-18,  发布年份 2013

来源: Springer

【 摘 要 】

BackgroundStudying rare outcomes, new interventions and diverse populations often requires collaborations across multiple health research partners. However, transferring healthcare research data from one institution to another can increase the risk of data privacy and security breaches.MethodsA working group of multi-site research programmers evaluated the need for tools to support data security and data privacy. The group determined that data privacy support tools should: 1) allow for a range of allowable Protected Health Information (PHI); 2) clearly identify what type of data should be protected under the Health Insurance Portability and Accountability Act (HIPAA); and 3) help analysts identify which protected health information data elements are allowable in a given project and how they should be protected during data transfer. Based on these requirements we developed two performance support tools to support data programmers and site analysts in exchanging research data.ResultsThe first tool, a workplan template, guides the lead programmer through effectively communicating the details of multi-site programming, including how to run the program, what output the program will create, and whether the output is expected to contain protected health information. The second performance support tool is a checklist that site analysts can use to ensure that multi-site program output conforms to expectations and does not contain protected health information beyond what is allowed under the multi-site research agreements.ConclusionsTogether the two tools create a formal multi-site programming workflow designed to reduce the chance of accidental PHI disclosure.

【 授权许可】

CC BY   
© Bredfeldt et al.; licensee BioMed Central Ltd. 2013