Can we trust the PCEHR not to leak?

In April this year, the Federal Minister for Health and Ageing, Nicola Roxon, stated that by July 2012 all Australians will be able to “sign up for a personally controlled e-health record . . . [that] will enable better access to important health information currently held in dispersed records around the country”.1 Laudable aims, but can patients and clinicians trust the reliability and confidentiality of this personally controlled e-health record (PCEHR)?

The National eHealth Transition Authority’s draft concept of operations document proposes that individuals will be able to access a data repository (“My PCEHR”) and tools (“My Access Controls”) to make this dispersed information available to their chosen health care providers.1 The authors failed to give essential details on how the PCEHR will work, but showed insight in their assessment that the scope and extent of information to be shared in the PCEHR is dependent on the readiness of the health care sector to participate.

The concept of democratisation of personal health information is central to the PCEHR, reflecting the populist philosophy of the present Web 2.0 and social networking environment where information is freely published and shared.2 This increases the potential for leakage of information, albeit often unintended, from clinician-held electronic health records (EHRs) via the disparate members of the PCEHR network (Box). Information that, if leaked, might have potential adverse impacts includes family history of disease, and information that may reflect negatively on other health professionals, friends or family members.2 Information leakage, along with complex access and provenance arrangements and individuals “hiding” rather than “denying access” to PCEHR information, will discourage clinicians from participating in a system where they are uncertain about the completeness of the information.

Personal health information should stay within a confidential patient–clinician therapeutic relationship, a concept promoted by the patient-centered medical home movement3 and endorsed by the National Health and Hospitals Reform Commission.4 Information exchange within a multidisciplinary care network, no matter who controls it, should be facilitated within the patient–clinician relationship. Ensuring consistency of shared terminology and a method to address misrepresentations will improve the quality of personal health information. Such alignment of patients’ and clinicians’ perceptions and understandings of health concepts and processes will improve health literacy, and this will encourage consumer empowerment, not consumer populism.5

The creation of shared information resources to support collaborative team care must take into account the business, architectural, workflow, provenance and governance requirements from both patients’ and clinicians’ perspectives. However, the success and sustainability of this system also requires careful alignment of the patient’s and the clinician’s EHRs (Box) within a health care home that provides a safe, effective continuum of care within a trusting patient–clinician relationship. This will minimise risks and engender the required confidence to make the PCEHR program work.

Pathways for the collecting, sharing, and possible leakage of information in an individual personally controlled electronic health record

Reproduced with permission from: Hannan T. What the hell is a PCEHR and what does it have to do with me anyway? The InformaticsInsider [internet] 2011; Jun (1). http://www.austemrs.com.au/page/informatics_insider.html