The Australian Federal Government is introducing a national digital health record system “My Health Record”. This has the backing of all of Australia’s peak health bodies, including the Australian Medical Association, the Royal Australian College of GPs and the Pharmacy Guild of Australia. However, it has come up against some strong opposition due to fears around security of information.
What is a digital health record system?
Systems like “My Health Record” are digital medicals record that stores medical data and shares it between medical providers. In the case of My Health Record, it is an online summary of someone’s key health information. Your health information can be accessed on any computer or device that is connected to the internet. Healthcare professionals will be able to access timely information about their patients such as shared health summaries, discharge summaries, prescription and dispense records, pathology reports and diagnostic imaging reports.
“My Health Records” and other systems like it aim to unite fragmented health systems, and allow more transparency so that patients can be empowered. It should also reduce both time and cost by easily sharing important information. This means that patients shouldn’t need to repeat their ‘health story’ every time they see a new clinician. Specific to “My Health Records” users are also able to add personal notes which could be the start of an advance care plan (click here to read about the importance of these). Users can set access controls to restrict who can and cannot access their health information and be notified when healthcare providers first access records. Users can also review their own health information. From the healthcare professionals point of view, this system aims to give them more time with patients – less time chasing clinical information and investigations, resending or chasing referrals, scanning, printing, filing and posting. On a larger scale, policy and service planners would be able to use data and information to make investment decisions, target public health initiatives and monitor the effectiveness of programmes.
The main opposition to digital health records has to do with security of information. There are potential risks of hackers being able to gain access to people’s information which they can then sell. Health records are valuable as a means of identity theft due to the wealth of personal information they contain. Also there are risks that people’s information will get sold to private companies which is what happened with a UK system called care.data. In 2016, after two years it was cancelled due to an investigation that found that drug and insurance companies were able to buy information on patients’ mental health conditions, diseases and smoking habits. There are also calls from organisations that work with vulnerable people that this is a way in which people could be controlled and could put them at greater risk.
“My Health Records” have tried to minimise these risks. Users are able to choose what information is stored on the Record and who has access to it such as family members, carers and healthcare providers. Records or individual documents can also be locked so they are only available using a PIN code. Importantly users can also opt to not allow their data to be shared for secondary purposes.
But what about the fact that you can only access this online. As we found out as a result of the Census, there are many groups of people including older people who find it difficult to, or are unable to go online. So what happens then? Does this system really empower these people or does it do the opposite? Is there another way people can access and control their details? If they have to ask a family member or friend to make changes or view their data does this just open them up to abuse or control?
Will New Zealand follow suit?
There are already apps that you can use to access and manage your medical history here in New Zealand, although nothing has been launched nationwide. The New Zealand Health Strategy highlights the importance of digital solutions to support better health care for all. One of the Ministry’s key projects in this area is to investigate the viability of a national electronic health record which would give consumers, health care providers, and policy and service planners’ better access to health information.
One focus of the Healthy Ageing Strategy is Health Literacy. More importantly, they are wanting to make health information “available and shared in a way that overcomes cultural and communication barriers.” So that all New Zealanders are empowered by this information. So if New Zealand does move to a digital health system, how does the government propose to minimise the potential risks and limitations? Watch this space!