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Online access to personal health information as a key component of shared decision-making: a pilot study in severe mental illness

Date and Location




Saturday 21 September 2013 - 10:30 - 12:00


Presenting author and contact person

Presenting author

David Menkes

Contact person

David Menkes
Abstract text
Background: To pursue shared decision making, patients often request access to their medical records, yet doing so can be frustrating. E-health has the perceived advantages of cost efficiency, improved access and participation, and better service provision, but this is yet to be convincingly demonstrated in severe mental illness. Objectives: We aimed to test how a new software (Smartmed Medifile) affects access to medical records, and perceived benefits of such access. Methods: We recruited volunteers with severe mental illness and asked their clinicians to confirm suitability and safety to participate. With training they could view HoNOS scores, medication details, treatment plans and lab results. Kaupapa Maori research methods were used to ensure effective collection of data from Maori participants; these included a focus on individual and collective Maori identity in relation to accessing and sharing information. Results: Recruitment proved difficult. After 8 months of vigorous advertisement to over 600 eligible patients, 19 consented to participate, and of these only 4 completed the protocol of 6 months access. Most withdrawals were due to worsening mental health. Participants were chiefly interested in prescriptions, progress notes, details about involuntary hospitalisation, and direct communication with their clinicians. Conclusions: Access to personal health information is a patient priority and, in combination with evidence, optimizes informed participation in decisions regarding health care. Despite stated interest in access to their records, recruitment of patients to this study was difficult, with identified obstacles at the organisational, practitioner, and consumer levels. Although the current software system is easy to use and visually attractive, patients with severe mental illness appear to have limited use for it. Despite refinements in facilitating access, mistrust of researchers and a clinician culture of protecting consumers from 'too much information' is likely to retard adoption of such technology.