Commentary: The Patient's Memory Stick May Complement Electronic Health Records
Leslie, Heather, Australian Health Review
THE SITUATION DESCRIBED by Stevens1 in the foregoing article is similar to that navigated by thousands of individuals in hospitals around Australia each day. Stevens has been able to identify gaps in communication, processes and timely availability of pertinent information which potentially put her health at risk. There is little doubt that her call for "legible and enduring record systems accessible by appropriate people" (page 400) would be supported by most of the general community.
Health information management is hugely complex, with large numbers of concepts and high rates of clinical knowledge change. Electronic health records (EHRs) are definitely not simple concepts that are solved by storing information in a relational database for use in a single organisational silo, but require the capture of the full breadth of health information in a manner that can be easily stored, retrieved in varying contexts, and searched. Then there is the additional and unique requirement of sharing this same information with a range of health care providers with differing foci, requirements, technical tools and term-sets. When you add in some of the other more lateral requirements such as medico-legal accountability, pooling data for public health research, and privacy, consent and authorisation for sharing sensitive health information, it becomes increasingly evident that health data management has no real equivalent in other industries.
In order for shareable electronic health records to become ubiquitous, there are numerous building blocks that need to be in place - appropriate levels of funding, legislative changes, consensus on a range of standards, stakeholder engagement, implementation of massive change management programs and so on, as outlined by Gram.2 Australia's solution is the HealthConneci program - a joint Commonwealth and state government initiative - which is gradually identifying the required pieces, and laying them out in a systematic way to solve the e-health system puzzle.
The EHR is not the whole answer
There is no doubt that successful navigation of our health system will be assisted by timely availability of high quality and comprehensive shareable health information at each step of the journey. This will come, but if we rely on the topdown system approach to EHRs it will take a considerable amount of time, money and effort to reach critical mass and provide broad benefits. And it will still not address all of the issues raised by Stevens.1 We will still need motivated health care providers seeking active access to that information in order to achieve best outcomes for all in a complex health system, and we will require matching processes and communication mechanisms to support best-practice use of the information and to minimise risk.
A common feature observed in nearly all of the existing and ongoing EHR developments is that the major focus is on data capture for the use of the clinician and about the patient. Most EHR planning revolves around the needs of general practitioners, hospitals, specialists, software vendors, health organisations and government, so that care can be provided to "the patient". Whatever the term you prefer to use, the consumer, individual or patient is still essentially regarded as a passive recipient of this flurry of activity.
In the main, current EHRs are actually patientcentric only in the sense that the health record, and all of the information contained within, is about a single individual. The record is still primarily clinician-centric, in that all of the data captured, exchanged and stored is primarily to enhance the clinician's ability to make diagnoses and treatment decisions for a given patient. In most cases, this record is then owned and managed by clinicians, or hospitals, as custodians on behalf of the patient, in order to maintain the "integrity" and "quality" of the EHR.
Consumers can manage personal health records
It is ironic that the majority of both consumers and health care providers seem to believe that while individuals can manage every other part of their lives, their health information is somehow different. …