From: Juanita Fernando Date: Wed, 15 May 2013 11:14:55 +1000 Subject: Consumer privacy fact sheets To: Diana.Weston@oaic.gov.au Cc: Juanita Fernando Dear Ms Weston, I write as Chair of the Health Sub Committee, Australian Privacy Foundation (http://www.privacy.org.au/). The APF is generally supportive of eHealth and mHealth concepts although we have concerns about the PCEHR implementation. The detail of these concerns have been the subject of many submissions to DOHA and NEHTA over recent years and are published on the APF web site. We wouldÊappreciate your review of these submissions. I was pleased to note the final draft of eHealth privacy fact sheets has been released and am examining these as I write. In theÊinterim, muchÊÊconsumer feedback concerning security, privacy and eHealth compels me toÊpoint out the following: 1. The factsheets communicate in motherhood statements that I believe are difficult for consumers to understand 2. The factsheets deal with events after a breach has occurred rather than prevention of breaches, so the influence of these on patient trust is questionable. 3. Patients have reported to us that complaints to the office of the OAIC are being dismissed without investigation. This is despite these patients' fear that their eHealth record contains data that is unreliable for diagnosis due to security breaches. Essentially, these patients feel there is nowhere to express these concerns except to the APF. This has been most clearly documented in a case study provided by a chronically ill patient, now deceased, as she describes encounters with clinicians and her struggle to correct errors on her eHealth record. Finally, I am also concerned about: 1. The lack of consumer representation on an advisory board thatÊtransparently reports outcomes Êto the community. The board Êcould help ensure the PCEHR registration and other processes comply with legal and governance requirements, with a view to publishing outcomes to help consolidate community confidence in a properly implemented PCEHR system. 2. Details of the execution of the agreement between DOHA and the OAIC. I look forward to your response. Regards Juanita -- Dr. Juanita Fernando Academic Convenor BMedSc(Hons), Faculty of Medicine, Nursing and Health Sciences Member of the global M8 Alliance Ranked 33 and 36 in the world by Times Higher Education and QS for 2011 Chair, Health Sub-Committee, Australian Privacy Foundation FACHI, Former Chair, Membership Sub-Committee (2009-2010) & former Council Member (2008-2010, Australasian College of Health Informatics Electronic and Mobile Medical Education Research Group (EMMERG), Faculty ofÊMedicine, Nursing & Health Sciences Mobile Health Research Group (MHRG),Faculties of Information Technology and Medicine, Nursing & Health Sciences