The concept of a Personally Controlled Electronic Health Record (PCEHR) might be the correct political tactic to address ethical concerns around the confidentiality, consent and involvement of healthcare providers in accessing electronic health records.
But the decision to place the consumer at the centre of this national health information repository may not prove to be the right approach.
Last month, it was reported that the Federal government’s PCEHR initiative, developed by Australia’s National E-Health Transition Authority (NEHTA), had failed to reach the expected uptake of 500,000 consumers in the first year.
NEHTA’s consumer-driven model is also facing another potential hurdle with US company MMRGlobal’s claim that NEHTA may be infringing on patents issued to its subsidiary MyMedicalRecords.com.
The firm is investigating whether federal and state governments, through NEHTA, have infringed on two patents that cover a method that enables consumers to access health records through their personal account using the PCEHR system.
This begs the question: Has too much emphasis been placed on an individual electronic health record (EHR) rather than a “shared EHR”, which recognises the importance of the relationship between consumers and their healthcare providers in sharing information?
Should a national electronic health record service place the relationship between consumers and healthcare providers at the heart of the data repository – allowing this relationship to govern the consolidation, contribution and protection of health data?
Relationships with our healthcare service providers govern our interactions with healthcare professionals and the level of care they provide us. Establishing meaningful and beneficial relationships between consumers and their healthcare providers is fundamental to the success of healthcare services.
Service providers recognise the health and financial benefits of providing and maintaining long-term and continued care to their clients and consumers want to receive care from providers they trust.
The long-term value of the relationship between healthcare providers and consumers is what encourages information sharing and the quest for better access to better health information.
Information shared between a consumer and healthcare provider belongs to both parties in joint custody – they don’t need to argue about who owns the information when it is disclosed by a consumer or given by the healthcare provider. The information is contributed jointly to benefit of both the consumer and the healthcare provider.
A shared electronic health record
A shared EHR that is centred on relationships provides well-defined and clearly understood rules that govern each consumer relationship, be it with their GP, pharmacist, specialist or family, friends and carers involved in their care.
Data sharing within a shared EHR could be governed by:
- Whether a relationship exists between a consumer and a health provider and the role of the provider.
- The level of trust between the consumer and their healthcare provider that limits the consents given to how shared health information will be used.
- What health information will be contributed to the shared EHR.
A shared EHR also automatically detects and notifies users when a promise is broken as a result of health data being added to the system or used and disclosed in a way that it should not have been.
By defining the rules of a relationship in advance, the shared EHR takes away the need for consumers to actively manage the privacy of their health information. This is in contrast to the PCEHR, which relies on consumers updating access lists and control settings to manage the collection, use and disclosure of their health data.
Shifting the focus from an individual to a relationship-centric shared EHR is a real alternative proposition that will better meet the needs of consumers and healthcare providers sharing health data online.
This model also has the potential to be further expanded to include consumer relationships with governments to support more informed national health care reporting and research.
There is no doubt that Australia needs a national electronic health record service to cut costs and improve patient outcomes through better access to individuals’ health information.
The PCEHR initiative may achieve this goal with more consumers “opting in” and healthcare providers starting and continuing to contribute health information about their clients.
But with some of the recent scrutiny on PCEHR, is it time to question whether Australia might achieve a national electronic health record service to more consumers sooner if we shift the focus from an individual to a shared EHR.
Brett Avery is e-health programme manager at Webstercare and has spent the past seven years researching and prototyping software for the health sector. He is also a member of the CIO Executive Council’s Pathways Leadership Development Program.