Lorie Donelle*, University of Western Ontario, London, Canada Allyson Lee, University of Toronto, Toronto, Canada Track: Research Presentation Topic: Ethical & legal issues, confidentiality and privacy Presentation Type: Oral presentation Submission Type: Single Presentation Building: Joseph B. Martin Conference Center at Harvard Medical School Room: B-Bray Room Date: 2012-09-16 09:45 AM – 10:30 AM Last modified: 2012-09-12

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Background: The growth in Internet use for health care is paralleled by the increased prevalence of chronic health conditions that tend to be long-lasting, are often degenerative in nature and require management rather than curative regimes of care. Parkinson’s Disease (PD), a progressive, and incurable motor system disease, affects over 100,000 Canadians, and is expected to increase in numbers as the baby boomer generation ages. Because chronic disease patients are expected to participate in the understanding and management of their illness; the Internet and Health 2.0 applications are important resources for gaining, gathering and sharing personal health information. While information privacy is regulated federally by the Personal Information Protection and Electronic Documents Act (PIPEDA) in Canada, the trend towards Internet-based healthcare has created a new set of privacy issues and concerns which have yet to be fully explored and understood. Mindful of the health care potential of Health 2.0 applications, an investigation of health consumers’ perceptions of online personal health information privacy was warranted.
Objective: To explore the perceptions of online information privacy and confidentiality among older Canadians with chronic disease (Parkinson’s Disease).
Methods: Using a descriptive qualitative research design, a convenience sample of community dwelling individuals with PD was recruited through PD community based groups. Participants self reported as Internet users. Data was collected through in-depth semi-structured interviews.
Results: Ten (6 males; 4 females) individuals with a mean age of 71.4 years and 5.3 years since PD diagnosis were included in the study. Data analysis resulted in four major themes regarding participant perceptions: (1) ‘Privacy Preferences’ included discussions of private information, privacy exceptions, and preferred anonymity; (2) ‘Online Information Safety’ revealed media, family, and friends as valued sources of knowledge; (3) ‘Privacy Concerns’ included issues of physical vulnerability, the lack of ‘people’ online, and lack of awareness concerning privacy legislation and policy; and, (4) ‘Internet Indifference’ reflected a reliance on traditional information sources.
Conclusions: Study results highlighted a number of worrisome issues related to privacy perceptions of older individuals with PD that seemingly discouraged their use of Internet-based health care resources. The Internet was perceived to be mysterious and confusing which contributed to participants’ fears about online information privacy and concern for information privacy breaches. Participants’ views on information privacy were strongly influenced by mass media reports and by close family and friends. There was a lack of participant awareness of the policies in place to protect online privacy. The link between self-reported physical vulnerability due to PD, and privacy concerns about using the Internet, requires further investigation. Currently, we fail to address feelings of physical vulnerability in those with PD as it relates to their use of the Internet. With growing numbers of health care consumers turning to the Internet for information and support, this work points to the need for further inquiry into consumers’ perceptions of online information privacy to ensure safe and user-friendly ways for older individuals with chronic diseases such as PD to gain support and knowledge through the Internet.