title: 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.
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.
authors.affiliation: Professor of Medical Ethics, Division of Community Health and Humanities.
authors.forename: Daryl
authors.initials: D
authors.lastname: Pullman
authors.forename: Sharon K
authors.initials: SK
authors.lastname: Buehler
authors.forename: Larry
authors.initials: L
authors.lastname: Felt
authors.forename: Katherine
authors.initials: K
authors.lastname: Gallagher
authors.forename: Jeannie
authors.initials: J
authors.lastname: House
authors.forename: T Montgomery
authors.initials: TM
authors.lastname: Keough
authors.forename: Lucy
authors.initials: L
authors.lastname: McDonald
authors.forename: Angela
authors.initials: A
authors.lastname: Power
authors.forename: Ann
authors.initials: A
authors.lastname: Ryan