Literature DB >> 17904684

Joint replacement recipients' post-surgery views about health information privacy and registry participation.

Amanda L Terry1, Bert M Chesworth, Paul Stolee, Robert B Bourne, Mark Speechley.   

Abstract

Patient registries have been demonstrated to improve health care, and represent an important source of data to health researchers and policy-makers. Building on our previous research that tested an explanatory model of health information privacy views with pre-operative joint replacement recipients, in the present study we explored privacy views and willingness to participate in registries among post-operative joint replacement recipients. Post-operative patients were asked to complete a self-administered mailed questionnaire. One hundred and fifty-seven of 173 (91%) eligible individuals were enrolled. Bivariate analyses were conducted using t-tests and one-way ANOVAs. Multivariable analyses were conducted using multiple linear regression. Overall, our previous findings that views about health information privacy are more predictive of potential registry participation than patient characteristics or health care experiences continue to hold true post-surgery. Certain health care experiences were found to play a role in health information privacy concerns, including hip versus knee replacement, primary versus revision surgery, and surgical complications. More variance was explained in post-surgery registry participation views than pre-surgery. In addition, gender differences in R(2) values were smaller post-surgery. However, some aspects of the final models, such as gender as an effect modifier continued in the post-surgery study. Researchers and policy-makers should consider the impact of encounters with the health care system when seeking to understand patients' privacy concerns and willingness to participate in registries.

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Year:  2007        PMID: 17904684     DOI: 10.1016/j.healthpol.2007.08.002

Source DB:  PubMed          Journal:  Health Policy        ISSN: 0168-8510            Impact factor:   2.980


  4 in total

1.  Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US.

Authors:  Saskia C Sanderson; Kyle B Brothers; Nathaniel D Mercaldo; Ellen Wright Clayton; Armand H Matheny Antommaria; Sharon A Aufox; Murray H Brilliant; Diego Campos; David S Carrell; John Connolly; Pat Conway; Stephanie M Fullerton; Nanibaa' A Garrison; Carol R Horowitz; Gail P Jarvik; David Kaufman; Terrie E Kitchner; Rongling Li; Evette J Ludman; Catherine A McCarty; Jennifer B McCormick; Valerie D McManus; Melanie F Myers; Aaron Scrol; Janet L Williams; Martha J Shrubsole; Jonathan S Schildcrout; Maureen E Smith; Ingrid A Holm
Journal:  Am J Hum Genet       Date:  2017-02-09       Impact factor: 11.025

2.  Improving Individual Acceptance of Health Clouds through Confidentiality Assurance.

Authors:  Tatiana Ermakova; Benjamin Fabian; Rüdiger Zarnekow
Journal:  Appl Clin Inform       Date:  2016-10-26       Impact factor: 2.342

3.  Joint replacement recipients' views about health information privacy.

Authors:  Amanda L Terry; Bert M Chesworth; Robert B Bourne; Paul Stolee; Mark Speechley
Journal:  Health Expect       Date:  2013-10-01       Impact factor: 3.377

Review 4.  Perspectives on neurological patient registries: a literature review and focus group study.

Authors:  Lawrence Korngut; Gail MacKean; Lisa Casselman; Megan Johnston; Lundy Day; Darren Lam; Diane Lorenzetti; Janet Warner; Nathalie Jetté; Tamara Pringsheim
Journal:  BMC Med Res Methodol       Date:  2013-11-09       Impact factor: 4.615

  4 in total

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