Why aren't more people using the My Health Record?

The My Health Record is an online summary of personal health information that patients can share with health providers. As many as one in five Australians have a My Health Record.

But recent statistics show the My Health Record is only being used by a small percentage of consumers, and even then not to its fullest uses. So how can we get a greater return on the estimated A$1.2 billion taxpayer dollars invested in the system?

1. More health professionals need to add information

To date, approved health-care providers in the system have uploaded only about 1.7 million clinical documents, for the 4.6 million Australians who have a My Health Record. Just over one third of these clinical documents are Shared Health Summaries - listing health conditions, allergies, medications, and immunisations.

Information about health-care recipients is also added to the My Health Record from other sources – including Medicare and the Pharmaceutical Benefits Scheme, along with pharmacy medications information and hospital discharge summaries. Some health-care providers might be willing to share clinical documents, but hold concerns about privacy and may be unsure how sharing the information will improve patient care.

The shared health information in the My Health Record could help many patients recall vital health information. It could be particularly useful for those who struggle with medication management, have multiple health conditions, enter hospital frequently, or have multiple health providers.

The main purpose of the My Health Record is to improve the quality, safety and efficiency of patient care. Reducing medical errors related to the poor exchange of health information between patients and their health providers, or across multiple health providers, is a high priority.

We need more health information added into the system before it’s going to be useful for more people in supporting their health-care decisions. Patients prompting their GP or practice nurse to upload a Shared Health Summary at each visit could increase use of the system, which is designed to improve patient control over their health information.

2. We need to add more information ourselves

Many consumers with a My Health Record have only had one since June 2016 through a trial of “opt-out” sites. Lacking experience or guidance in using the My Health Record, they will not know what they can upload or why, or how to use the technology.

Currently, there are only about 80,000 “Consumer Entered Health Summaries” in the My Health Record. These summaries contain emergency contact details and very brief information on allergies and medications. There are also about 35,000 “Consumer Entered Health Notes” – similar to a health journal or diary.

Fewer than 900 people have uploaded a copy of their Advance Care Directive - a critically important document outlining a person’s wishes for future medical treatment - into the My Health Record. As it is the only national online repository for Advance Care Directives that can be accessed anywhere, more legal information websites need to prompt people to store their Advance Care Directive in the My Health Record.

Not knowing how to use computers, navigate the My Health Record, or save and upload documents will prevent many people from taking advantage of the system.

3. More people need to know how to use it

Currently, the My Health Record places high demands on reading and e-health literacy, making it difficult for many people to use. This could be a barrier for a large number of people.

People with low health literacy, people who lack engagement with digital health, people who lack access to a computer and the internet, and people with limited English literacy could struggle with these online records.

Information about the My Health Record needs to be inclusive, easier to read, and translated into many languages – and use pictures and videos – to enable everyone to use the system.

4. The people who need it most need support to use it

As many as one in five Australians have a disability. Anyone with a condition that affects their ability to explain their health history to others might need help to use the My Health Record. This includes people with dementia, stroke, traumatic brain injury, intellectual or developmental disability, autism spectrum disorder, motor neurone disease, Parkinson’s disease, and people with a wide range of social, physical, cognitive, or sensory impairments affecting communication.

People with communication difficulties have three times the risk of preventable harmful adverse events in hospital, relating to their problems communicating their needs to health providers. The My Health Record might be particularly helpful for this group, who are at risk of exclusion because of their communication impairments and low levels of digital inclusion.

While the My Health Record is set up for use by all Australians, people with communication difficulties and their families may need additional information, funding, and other supports to enable their participation. They might also need help to identify who would be their Nominated or Authorised Representative in the system.

Future enhancements of the My Health Record need to take into account the views and experiences of people with multiple health conditions who are engaging with the My Health Record. Gathering their stories of experience could lead to a greater understanding of the types of support needed for more people to use and benefit from this important e-health initiative.

Bronwyn Hemsley receives funding from the National Health and Medical Research Council of Australia and the Australian Research Council. She is affiliated with the International Society for Augmentative and Alternative Communication, the Health Informatics Society of Australia, the International Society for Quality and Safety in Healthcare, and Speech Pathology Australia.

Jacqueline Meredith is employed as a Research Associate on funding provided by the National Health and Medical Research Council of Australia.

Shaun McCarthy is an Associate Investigator on an NHMRC project grant on the My Health Record at the University of Newcastle. He is the Director of the University of Newcastle Legal Centre.