Getting e-health right

From July this year all Australians will be able to register to have their personal health records made accessible online to the health care professionals they authorise. The promise is that for the first time, Australians will have easy access to information about their medical history, including medications, test results and allergies, and so will their health care providers.

Establishing a “personally controlled electronic health record” (PCEHR) system is a massive undertaking for Australia on which the Federal Government is spending more than $460 million over two years. But almost on the eve of implementation it’s time to ask the question: in focusing so hard on getting the process right, have we lost sight of the people the system is supposed to help?

The potential overall benefits of an effective e-health system are not in doubt, although politicians will continue to argue about how it is done and how much is spent on it. A report by Booz & Company cited by the Federal Government estimates a comprehensive e-health system could save not only $7.6 billion in healthcare costs by 2020, but also 5000 deaths, two million primary care and outpatient visits, 500,000 emergency department visits and 310,000 hospital visits each year. The benefits are predicted to flow from fewer medication errors and optimised use of pharmaceuticals, better care programs and prevention measures, better use of health care infrastructure, and higher productivity among health care workers.

In practice, an e-health system would mean instead of patients having to ferry paper test results, X-rays and other medical documents from their GP to their specialist and back again, both the specialist and the GP will be able to access patient records electronically. If a person has to go to hospital, whether an emergency or booked in advance, the attending doctors will be able to access his or her clinical information so as to make better-informed choices about their health care. Patients will “experience the freedom of enhanced shared care, improved decision support based on timely, accurate information, and be more involved in the management of their own health”, according to the National E-Health Transition Authority (NEHTA) which has the job of implementing the system.

So far, sounds good. To date, perhaps understandably, the focus has been on getting the infrastructure, process and protocols right. This is necessary to fulfil the Government’s promise that the system will be “underpinned by rigorous governance and oversight to maintain its clinical integrity, utility, privacy and national standards and core infrastructure”.

It is extremely important, for example, that the system be secure enough to protect individuals’ privacy and prevent their personal health information from getting into unauthorised hands. It is also critical that medical indemnity issues are clarified, particularly in relation to any harm that might arise from clinical decisions taken as a result of inaccurate information in these records.

The concern is though, that in their determination to get the process right, the system’s designers are overlooking the crucial part of the equation that adds up to success: people’s willingness to make use of the system. What, as it’s currently conceived, does the system offer to individuals that will make them want to get more involved in managing their health? What, apart from strong Government support, is there to stop Australia’s e-health system going the way of Google Health? It promised similar things, but died a quiet death on January 1 due, essentially, to lack of interest, despite the untold millions of dollars Google sunk into its development.

At this stage, the promise that an effective e-health system for Australia will help health care providers do their work more efficiently is a big enough challenge, let alone the claim that the system will help individuals manage their own health more effectively.

Sure, it’s useful to be able to access your medical records, to call up in accurate detail your medical history and test results, but it’s not very interesting once you’ve done it once. And, as we millions of drinkers, smokers, over-eaters and lack-of-exercisers can attest, the mere knowledge of what is good and bad for our health, or even that it needs attention, however urgently, may not be sufficient to prompt us into action.

If the system is to engage people better in managing their own health, they need more ownership of it – to feel, in fact, that it is an enjoyable and worthwhile place to hang out, digitally speaking. In contrast to the purveyors of alternative health care, mainstream health providers have been remarkably slow to tap into the growing power of social media. But the promised e-health system presents a generational opportunity to connect with Australians about their health in innovative and importantly, popular ways. What if the system allowed people to not only (passively) view their personal health record, but to (actively) interact with their data so they get a realistic picture of what they can do to reduce their risk profile and improve their health and well-being?

What if the system could be a trusted place where people could connect with others facing similar health challenges, tell their health stories and learn from each other’s experiences in an online community? What if health care practitioners qualified to add knowledge and correct misconceptions were integral to that community?

The online health community developing through the Mayo Clinic blogs in the US points to some possibilities. The HealthTracker tool developed in Australia by the George Institute for Global Health also suggests a way forward. The first Health-Tracker module designed to be used during consultations between patients and their health care practitioners focuses on cardiovascular disease. It is being trialled in 40 General Practices and 20 Aboriginal community controlled health services in NSW and Queensland with funding from the National Health and Medical Research Council and NSW Health.

In two mouse clicks, HealthTracker calculates the patient’s overall risk of heart attack or stroke, then automatically synthesises recommendations from all relevant health guidelines to give tailored management advice specific to the patient’s circumstances. A graphical color interface is also provided to explain to patients their cardiovascular risk. This allows the patient and health professional to assess current and projected risk and to perform ‘what if’ scenarios, for example, how would the patient’s risk of heart attack be reduced if they stopped smoking. A new module is currently in development to allow the patient’s information to be securely uploaded to a personal web-based portal. There, patients will be able to review and interact with their personal information, explore information provided in ‘patient journeys’ and socially interact with other patients and their GP if they wish.

Similar modules for other chronic diseases such as diabetes, osteoporosis, respiratory health and low back pain are also under development. If it can give patients more tools with which to actively manage their health on the basis of good, readily accessible, easy to use information, and at the same time improve work flow for time-poor practitioners, the new e-health system will fulfil its promise.