Sorry, you can't have that information: Data holder confusion regarding privacy requirements for personal health information and the potential chilling effect on health research

7Citations
Citations of this article
18Readers
Mendeley users who have this article in their library.

Abstract

This study, conducted in Newfoundland and Labrador, assessed the level of awareness, perceptions and concerns of healthcare providers, health researchers, data managers and the general public about the collection, use and disclosure of personal health information (PHI) for research purposes. Data collection involved surveys and follow-up focus groups with participants. Results indicate a poor understanding generally with regard to privacy rights and responsibilities. Many professionals are unfamiliar with the legislative environment for PHI, particularly as it pertains to the access and use of PHI for research purposes. Lack of familiarity with basic requirements for patient-based research, coupled with heightened sensitivity to privacy issues owing to various federal and provincial regulatory initiatives, could have a chilling effect on health research. Importantly, our results indicate that the public is much less concerned about the use of their PHI for health research purposes than are professionals who collect, store and share it.

Cite

CITATION STYLE

APA

Pullman, D., Buehler, S. K., Felt, L., Gallagher, K., House, J., Keough, T. M., … West, R. (2009). Sorry, you can’t have that information: Data holder confusion regarding privacy requirements for personal health information and the potential chilling effect on health research. Healthcare Policy, 4(4), 61–76. https://doi.org/10.12927/hcpol.2009.20806

Register to see more suggestions

Mendeley helps you to discover research relevant for your work.

Already have an account?

Save time finding and organizing research with Mendeley

Sign up for free