My Health Record, previously known as personally controlled electronic health record (PCEHR) and the eHealth record, was introduced in Australia in 2012. Since then, over 6.1 million Australians have signed up for the program on an opt-in basis. However, from 15th November 2018, all Australians will have a My Health Record created for them unless they opt out of the program.

This change to the way that electronic health records are created in Australia has important implications for healthcare professionals. Informed consent is an integral part of modern healthcare. So, as with other interventions, healthcare professionals must be able to present accurate and relevant information to allow patients to make an informed decision regarding how their personal information is used.

What is My Health Record?

My Health Record is an online summary of a person’s medical history. Information that can be recorded includes medication lists, allergies, hospital and GP summaries, investigation reports, and advanced care plans. In addition, up to two years of data from the Pharmaceutical Benefits Scheme (PBS), Medicare Benefits Scheme (MBS), and Australian Immunisation Register will automatically upload when a record is created along with organ donation decisions entered into the Australian Organ Donor Register.

Patients can control what information is uploaded to their record as well as who can access specific information. As patients retain total control of their record, it is important that healthcare professionals understand that the information they view may not be complete.

Potential advantages of a My Health Record

A literature review by the Australian Commission on Safety and Quality in Health Care demonstrates that 2-3% of all hospital admissions in Australia are medication related. This equates to around 230,000 medication-related admissions each year with around 130,000 of these due to adverse drug reactions. The annual cost of these admissions is estimated to be around $1.2 billion.

It has been proposed that many of these admissions could be avoided with greater continuity of care. Patients with complex medical histories are likely to be under the care of multiple healthcare professionals. Ineffective communication between these providers is associated with increased hospitalisations as well as adverse drug reactions, inconsistent clinical advice, and duplication of tests. Electronic healthcare records are one of the key measures often recommended to improve continuity of care.

The following people are likely to benefit the most from having an electronic health record:

  • People with complex medical histories;
  • People who visit multiple healthcare providers;
  • People who take multiple medications;
  • The elderly;
  • People who do not speak English well; and
  • People who have difficulty communicating or remembering their medical history.

The My Health Record may also be particularly beneficial in emergency situations where time is most critical. Providing doctors with immediate knowledge of previous medical issues, current medications, and known allergies could prove life-saving in these cases.

Security

The My Health Record system adheres to Australian Government security standards. The system is monitored by the Cyber Security Centre of the Australian Digital Health Agency and is regularly tested.

One of the benefits of an electronic record is that an audit trail remains. In contrast to paper-based documents that can be viewed without detection, the My Health Record will record who accessed documents and at what time.

Privacy settings

The default setting allows healthcare providers to access all documents within an individual’s record with the exception of the consumer-only notes section and any documents previously removed by the individual. However, patients can adjust the settings on their record to maintain the level of privacy they are comfortable with. This process does require some computer literacy which may limit its application in some groups.

The following codes can be generated by the patient to share with selected individuals and healthcare providers:

  • Personal access code – grants access to trusted individuals (e.g. family members, carers) to view or help manage a record;
  • Limited document access code – grants access to individual documents or types of document; and
  • Record access code – allows chosen healthcare providers to access the health record.

Emergency access

A healthcare provider may legally bypass the access code(s) using an emergency access function. This function may only be used in two scenarios:

  • When the provider reasonably believes that access will reduce or prevent a serious threat to the individual’s life, health, or safety and it is unreasonable or impracticable to obtain consent; or
  • When there are reasonable grounds to believe that access to the record is required to lessen or prevent a serious threat to public health or public safety, e.g. to identify the source of a serious communicable disease.

Use of the emergency access function is recorded and available for the patient and their authorised representative(s) to view. Individuals may also elect to receive SMS or email alerts each time the emergency access function is used to access their record.

Healthcare providers should make themselves familiar with their legal obligations in this situation, as detailed in the My Health Records Act 2012 (section 64). Unlawful use of the emergency function could expose the user to civil and criminal proceedings.

Secondary use of data

While the primary purpose of electronic health records is to improve medical care for the individual, information may also be used for the purposes of research and public health, law enforcement, or system operator functions. If a patient does not want their data to be used for secondary purposes, they must adjust their privacy settings.

Principles of the secondary use of data are available from the Department of Health and include:

  • Information may not be used solely for commercial and non-health related purposes;
  • Information may not be provided to insurance agencies;
  • Data cannot be used to assess eligibility for government benefits;
  • Applications for data must be approved by the Data Governance Board; and
  • Identified data can only be used with a patient’s specific consent.

Mature minors

Once a child turns 14, their Medicare and PBS claim information will no longer be visible to their parents on My Health Record. However, parents or guardians acting as authorised representatives for their child may continue to access other information such as the health summary, prescribed medications, test results, discharge summaries, and specialist letters until their child turns 18.

Teenagers have a right to confidentiality, and some may prefer that their parents are not able to view their health records. There are options available for persons over 14 years of age to improve their privacy, including:

  • The choice to opt out of My Health Record entirely;
  • Take control of their own record; or
  • Advise all treating health care professionals not to upload information to their record.

While teenagers can utilise any of these strategies to protect their privacy, they all require a certain level of proactivity and health literacy on the teenager’s behalf. Healthcare professionals should respect a teenager’s right to privacy by asking them if they would like their information uploaded at the point of care.

Summary

The opt-in period for My Health Record will close in November. After this time, all Australians will have a My Health Record created for them unless they opt out. There are many reasons why an individual may wish to have an electronic health record. However, many people may not wish to have a My Health Record due to security concerns. These people should be advised that, if they choose to opt out now, they will be able to create a record for themselves later if they change their minds.

Healthcare professionals using the information contained in a My Health Record must remember that this system does not replace the need for patient-clinician interaction. Due to the ability for patients to remove or hide documents, the My Health Record cannot be considered a complete source of information. Any information contained therein should be verified before clinical decisions are made.

Further information, including patient information brochures in various languages, is available for download on the My Health Record website.

References:

  1. Australian Digital Health Agency. My Health Record. Canberra: Australian Government; 2018.
  2. Health Department. My Health Records Act 2012. (no. 63). Canberra: Australian Government; 2017.
  3. Roughead L, Semple S, Rosenfeld E. Literature Review: Medication Safety in Australia. Darlinghurst: Australian Commission on Safety and Quality in Health Care; 2013.

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