An equitable approach to enhancing the privacy of consumer information on <i>My Health Record</i> in Australia

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Abstract

Australia’s national electronic health record (EHR), My Health Record (MHR), raises concerns about information privacy and the presumption of consent to participation. In contrast to the “opt-out” framework for participation, consumers must “opt-in” to obtain additional privacy features to protect their health information on MHR. We review ethical considerations relating to opt-in and opt-out frameworks in the context of EHRs, discussing potential reasons why consent for additional safeguards is not currently presumed. Exploring the implications of recent amendments to strengthen consumer privacy, we present recommendations to promote equity in health information security for all Australians using MHR.

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Most cited references 8

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Patients want granular privacy control over health information in electronic medical records.

Kelly Caine, Rima Hanania (2013)

To assess patients' desire for granular level privacy control over which personal health information should be shared, with whom, and for what purpose; and whether these preferences vary based on sensitivity of health information.

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Is Open Access

Patient and public views about the security and privacy of Electronic Health Records (EHRs) in the UK: results from a mixed methods study

Chrysanthi Papoutsi, Julie E Reed, Cicely Marston … (2015)

Background Although policy discourses frame integrated Electronic Health Records (EHRs) as essential for contemporary healthcare systems, increased information sharing often raises concerns among patients and the public. This paper examines patient and public views about the security and privacy of EHRs used for health provision, research and policy in the UK. Methods Sequential mixed methods study with a cross-sectional survey (in 2011) followed by focus group discussions (in 2012-2013). Survey participants (N = 5331) were recruited from primary and secondary care settings in West London (UK). Complete data for 2761 (51.8 %) participants were included in the final analysis for this paper. The survey results were discussed in 13 focus groups with people living with a range of different health conditions, and in 4 mixed focus groups with patients, health professionals and researchers (total N = 120). Qualitative data were analysed thematically. Results In the survey, 79 % of participants reported that they would worry about the security of their record if this was part of a national EHR system and 71 % thought the National Health Service (NHS) was unable to guarantee EHR safety at the time this work was carried out. Almost half (47 %) responded that EHRs would be less secure compared with the way their health record was held at the time of the survey. Of those who reported being worried about EHR security, many would nevertheless support their development (55 %), while 12 % would not support national EHRs and a sizeable proportion (33 %) were undecided. There were also variations by age, ethnicity and education. In focus group discussions participants weighed up perceived benefits against potential security and privacy threats from wider sharing of information, as well as discussing other perceived risks: commercial exploitation, lack of accountability, data inaccuracies, prejudice and inequalities in health provision. Conclusions Patient and public worries about the security risks associated with integrated EHRs highlight the need for intensive public awareness and engagement initiatives, together with the establishment of trustworthy security and privacy mechanisms for health information sharing. Electronic supplementary material The online version of this article (doi:10.1186/s12911-015-0202-2) contains supplementary material, which is available to authorized users.

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A personally controlled electronic health record for Australia.

Christopher Pearce, John Bainbridge (2024)

On July 1, 2012 Australia launched a personally controlled electronic health record (PCEHR) designed around the needs of consumers. Using a distributed model and leveraging key component national eHealth infrastructure, the PCEHR is designed to enable sharing of any health information about a patient with them and any other health practitioner involved in their care to whom the patient allows access. This paper discusses the consumer-facing part of the program.