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
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 co...
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ftpubmed:oai:pubmedcentral.nih.gov:2700705 2023-05-15T17:22:14+02:00 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 Pullman, Daryl Buehler, Sharon K. Felt, Larry Gallagher, Katherine House, Jeannie Keough, T. Montgomery McDonald, Lucy Power, Angela Ryan, Ann 2009-05 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2700705 http://www.ncbi.nlm.nih.gov/pubmed/20436810 en eng Longwoods Publishing http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2700705 http://www.ncbi.nlm.nih.gov/pubmed/20436810 Copyright © 2009 Longwoods Publishing Research Paper Text 2009 ftpubmed 2013-09-02T14:09:39Z 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. Text Newfoundland PubMed Central (PMC) Newfoundland |
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Research Paper Pullman, Daryl Buehler, Sharon K. Felt, Larry Gallagher, Katherine House, Jeannie Keough, T. Montgomery McDonald, Lucy Power, Angela Ryan, Ann 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 |
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Research Paper |
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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. |
format |
Text |
author |
Pullman, Daryl Buehler, Sharon K. Felt, Larry Gallagher, Katherine House, Jeannie Keough, T. Montgomery McDonald, Lucy Power, Angela Ryan, Ann |
author_facet |
Pullman, Daryl Buehler, Sharon K. Felt, Larry Gallagher, Katherine House, Jeannie Keough, T. Montgomery McDonald, Lucy Power, Angela Ryan, Ann |
author_sort |
Pullman, Daryl |
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 |
title_short |
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 |
title_full |
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 |
title_fullStr |
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 |
title_full_unstemmed |
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 |
title_sort |
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 |
publisher |
Longwoods Publishing |
publishDate |
2009 |
url |
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2700705 http://www.ncbi.nlm.nih.gov/pubmed/20436810 |
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Newfoundland |
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Newfoundland |
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Newfoundland |
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Newfoundland |
op_relation |
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2700705 http://www.ncbi.nlm.nih.gov/pubmed/20436810 |
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Copyright © 2009 Longwoods Publishing |
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