My Health Record: on a path to nowhere?
Dr Bernard Robertson-Dunn
First Published by the Medical Journal of Australia
Issue 25 / 2 July 2018
The impending move to opt out of the My Health Record will potentially have a very significant impact on GPs and their work practices. It is suggested that GPs need to make informed decisions regarding their use of the system and the advice they give to patients.
The following is a summary of the My Health Record, its context within the government’s broader agenda for acquisition of health and other datasets as well as the way the government is attempting to persuade GPs to participate in its use.
What is My Health Record?
According to the government’s website myhealthrecord.gov.au, “My Health Record is a secure online summary of your health information”.
This gives the impression that when a patient signs up for a My Health Record, or is registered for one under the opt-out scheme, they will get a summary of their health information. They won’t.
The opt-out scheme will only register a patient for a My Health Record. If a patient wants their My Health Record to contain a Shared Health Summary (SHS), they must appoint a nominated service representative (often their GP) and work with them to populate, manage and regularly update the information. It won’t happen automatically, and it isn’t just a simple matter of clicking on a button and uploading data. This is what the government’s website says:
“The first time you log into your My Health Record there may be little or no information in it. Information will be added after visiting a healthcare provider such as a GP, pharmacist or hospital. You can begin to add your personal health information and notes straight away.”
Most of the data in My Health Record are not health information; they are data relating to a patient’s medical treatment. The system is not designed to store health data such as weight, height, blood type, alcohol use, smoking and exercise patterns.
My Health Record is a simple document database. It is based primarily on pdf files, which are simply aggregated without being integrated or managed from a clinical perspective. It is owned and controlled by the federal government and attached to clinical, hospital, pharmacy, imaging and pathology systems, which can upload medical data to it and download medical data from it.
Ironically, for a supposedly personal health record, a patient cannot print a copy of their health information.
My Health Record is an additional record system, on top of, and in addition to, GPs’ existing systems. It requires extra effort to manage, yet it offers no benefit to the GP because most if not all the data are already in the GP’s existing clinical system. The pdf format of the data files makes it difficult and time consuming to access, and the lack of context makes their use in research or analytics problematic.
Uploading an SHS is not simply a matter of clicking a button. The patient’s GP takes on an unknown responsibility and/or liability, in the sense that this has not yet been defined in legislation or tested in court. The AMA’s “Guide to Medical Practitioners on the use of the Personally Controlled Electronic Health Record System” makes it clear that uploading an SHS is not trivial exercise.
The government’s website says:
“When creating the SHS, the nominated healthcare provider needs to ensure that all aspects of it have been completed and verify the accuracy of the information it contains. In assessing its content, the nominated healthcare provider should take into account other relevant information on the patient’s My Health Record.”
My Health Record may also include discharge summaries. A recent MJA InSight article was critical in its analysis of these. Under the title of “GPs want clinical handovers, not discharge summaries” the authors said:
“In the real world, GPs are grappling with being thrown links to hospital electronic records through systems such as ‘The Viewer’. Investigations are likely to be uploaded (after a delay) to My Health Record. These are raw data, unfiltered and disorganised, and more of a throw than a handover. Being thrown raw data and being expected to catch them in this way is akin to a hospital doctor being given the login to the GP clinic’s patient management system and being expected to extrapolate a referral.”
This probably applies equally to all the summary documents: the SHS, discharge summaries and event summaries.
The issue of raw data in My Health Record applies also to test results, which, without context, are useless at best and dangerous at worst.
“Among patients with low health literacy and numerical skills, confusion about the meaning of results is common. Many tests are reported in the same form that the doctor sees them, which even savvy patients may find ‘literally meaningless’ … In some situations we run the risk of patients misinterpreting that there is no problem when there is one, or assuming there’s a problem when there isn’t.”
In addition to summary documents and test results, there are data that are derived from government systems.
My Health Record is not designed to replace existing clinical systems. This is appropriate because the federal government is not directly involved in, or responsible for, the delivery of health care services. My Health Record is an additional source of summary health care data, where the data are derived from existing health care systems. In other words, most, if not all, the data in a patient’s My Health Record are already in their GP’s clinical system.
By far the largest number of documents come from the Medicare system, comprising only billing data, with minimal clinical information, and Pharmaceutical Benefits Scheme prescription data (677 177 059 combined) compared with clinical documents (5 477 845), as reported on 29 April 2018.
My Health Record in context
Announcements from the Australian Digital Health Agency website seem to suggest that the government will be extending My Health Record in order to relate the Medicare Benefits Schedule and Pharmaceutical Benefits Scheme data to health care activities. Without the detailed data held in GP and hospital systems, it is difficult to see how this could be useful to either clinicians or medical researchers.
It might help GPs to know that My Health Record is not the only initiative that the government is pursuing with regard to health data and what the government is, or could be, using these data for. These include:
- An Australian Bureau of Statistics project, the Multi Agency Data Integration Project (MADIP) which is designed to link data from the Department of Social Services, the Department of Health, the Department of Human Services, the Australian Taxation Office and the Australian Bureau of Statistics. The purpose of the MADIP is to “create an enduring, linked, publicly accessible research dataset, which is on hand to help government agencies and researchers respond to nationally important policy and service delivery questions”.
- The Practice Incentives Program – “activities include continual improvements, quality care, enhanced capacity, and improved access and health outcomes for patients”.
- A new division of the Department of Health, Provider Benefits Integrity Division, that “is responsible for identifying, investigating and treating incorrect claiming, inappropriate practices and fraud. The Department is consulting stakeholders with the intention of changing a number of acts. The proposed changes would amend the Health Insurance Act 1973, the Health Insurance Act 1973, and the Dental Benefits Act 2008 to allow the Department to directly collect information from employing organisations, corporations and hospital authorities such as practice records”.
The government is planning to actively promote the use of My Health Record among GPs through a variety of techniques and technologies. Some information about its intention is available through a Request for Expression of Interest (REI) for what the government calls “test beds”.
The repeated objective of the test beds project is to identify benefits of My Health Record. Not costs, not risks, not to evaluate My Health Record, just to identify benefits.
“Their purpose is to promote innovation to address Australia’s highest priority health challenges, generating evidence of how the new approaches improve health outcomes.”
The tender documentation says:
“This REI process is intended to enable the Agency to establish test bed projects that will produce evidence of the positive impact of new digitally enabled services and models of care, and demonstrate that they are sustainable and scalable.”
“The first tranche of test beds should include use of the My Health Record system and how it can be utilised to create new, digitally enabled services and models of care, particularly where these can be rapidly implemented or are already underway.”
In an addendum to the Test Bed REI, the Australian Digital Health Agency provided some information about its activities. These are the six evaluation projects mentioned in the YouTube presentation:
- evaluating how GPs in primary care use My Health Record to improve their patients’ health through improved medicines management, sharing information, and reducing unnecessary duplication of diagnostic services, with the National Prescribing Service (NPS) MedicineWise and the University of Melbourne;
- evaluating how GPs and hospitals use My Health Record to improve their patients’ health through improved medicines management, reducing unnecessary duplication of diagnostic services, and reducing hospital admissions and length of stay. This is with PenCS, Western Sydney Primary Health Network, the University of Western Sydney, and NSW Health;
- educating GPs about how to use My Health Record to improve their management of patients’ medicines (specifically deprescribing inappropriate medicines) and reduce unnecessary duplication of diagnostic services. This project is a specific multifaceted education intervention with MedCast and the University of Wollongong;
- quarterly tracking of health care providers to investigate awareness, readiness, attitudes, and experience regarding the My Health Record system through to early 2019. This is with McNair YellowSquares and Rodika Research Services;
- changing clinical behaviour in primary care using My Health Record to improve uploading and viewing of documents, sharing of useful and accurate information, and informed clinical decision making. This project involves the discipline of behavioural economics and is with the Behavioural Insights Team Australia; and
- evaluating the performance of the My Health Record system by conducting data analytics on de-identified, administrative, non-clinical My Health Record data to investigate the impact on medicine management, ordering diagnostic services, adherence to evidence-based care, patterns of health care use, and associated costs.
The Australian Digital Health Agency (the operators and custodians of My Health Record) and the government have failed to understand that health care professionals need better access to current, accurate, well formatted and managed high quality patient data. Only a few patients want access to their medical data. This could be achieved at minimal to zero cost to government through improved interoperability and patient portal access to GP systems – as is available in Sweden. GPs could benefit from tools that assist them to understand the data and to make better decisions.
Current, accurate point of care data are much more important than historical data. The current focus on health and medical records is in danger of turning GPs into data entry clerks and can lead to burnout. An ineffective, pseudo health summary record system doesn’t meet the needs of health professionals or of patients. All it does is increase costs, reduce medical effectiveness, and put patient privacy at risk.
Better sharing of patient data among health professionals has significant potential medical benefits. Giving them to the government doesn’t, especially if the intent is to monitor and question the activities and decisions of health professionals. An unintended consequence could be that health professionals are further distracted from health care by having to justify their activities and decisions.
Quo vadis My Health Record?
My Health Record replaces nothing; it does nothing for GPs apart from increasing their workload; it does nothing for a patient that a GP can’t do at minimal cost as and when required; it is on a path to nowhere; it is a major privacy risk and will potentially lead to further bureaucratic inefficiencies.
It may also provide insights into GP work practices and clinical methodologies.
The government has made plans to persuade GPs to participate in My Health Record using a variety of mechanisms, mostly so far unannounced. It would be wise for GPs to be fully aware of the nature of My Health Record, the full range of uses the government could make of data in the system over and above any benefits that might accrue to patients, and the techniques the government is contemplating bringing to bear on GPs and potentially other health providers.
The future of My Health Record is in the hands of GPs.
Dr Bernard Robertson-Dunn is not a GP or health care professional. He trained as an electronic and automation engineer, has a PhD in modelling the electrical activity in the human small intestine and has had over 40 years modelling, architecting and designing large scale information systems, mostly in government environments. He has been following the progress of, and has contributed to, the debate on the My Health Record for over 10 years. He has no association or affiliation with any vendor or government organisation. He is chair of the Health Committee of the Australian Privacy Foundation.