Informed consent and the security of the electronic health record (EHR): some policy considerations

What do patients with glaucoma think about personal health records?

“…As the topic was included in the schedule the participants may have felt that the facilitators were keen on PHRs and responded positively as a result although every effort was made to ask for advantages and disadvantages and to get a balanced view. Privacy, information security and issues relating to consent to sharing information have been a barrier to the adoption of electronic PHRs and this study did not address the attitudes of our participants to these issues. This may be more of a theoretical limitation as <1% of patients opted out of the SCR however there was considerable discussion about the adequacy of the public information programme and this study indicated that our participants would like far more information available and shared than envisaged in the SCR.…”

‘Never heard of it’– Understanding the public’s lack of awareness of a new electronic patient record

“…Electronic patient records may bring both benefits and risks 3 . In relation to the storage and sharing of sensitive personal health data, for example, there is a trade‐off between making data accessible and protecting privacy 4,5 ; public trust in Internet‐based information is low 6 ; and there are ethical and legal implications of potential security breaches in Internet‐accessible record systems 7–9 …”

Routinisation of informed consent in online health care systems

“…The act of consenting to the collecting, storing and dissemination of personal and sensitive health information carries particular ethical and legal significance [13,14]. The loss of control over access to personal health information -through breaches of security or simply because of legislation providing many and large groups of health personnel with access -may cause harm to the individual in various ways.…”