My Health Record – Have we created data hysteria?

Currently there is much debate around the implementation of the government’s My Health Record. This debate has centred around the decision to make people opt out of the system as opposed to opt in, the government’s ability to keep our health information secure and the lack of trust and legislation around how the government will use this data.

The discourse around capturing medical data has been occurring since the introduction of Medicare in 1975. Despite there being rapid growth in technology and nearly every adult having some online footprint there has been very little progress towards comprehensive health records where your health information is available for you to access when you want it.

Much of the data that will be collected in a My Health Record is already in a database somewhere ie Medicare, PBS, private health provider, GP etc.  Despite this, and assurances from the government around data security, hysteria is being created. A My Health record is pretty much just bringing all your health data together.

A My Health Record is a health diary that can capture a person’s health information from the time they are born to the time they die. This is a much-needed health initiative that has the potential to not only empower health consumers but improve health outcomes.

According to the US Department of Health and Human Services patients forget between 40-80% of the information they are given during a medical appointment and of the information they do retain 50% of it is incorrect.

No-one retains all the information they receive during a medical consultation.

Added to this is, only about 40% of adults have the level of health literacy they need to make well-informed decisions about their health. Low levels of          health literacy are linked with poorer outcomes and can prevent a person from sharing personal information, such as health history, with health professionals. Health literacy also affects a person’s ability to manage a chronic disease.

Chronic disease is a big burden on the health system. According to the Australian Institute of Health & Welfare (AIHW), in 2014/2015, 50% of Australians had one chronic disease, patient recall and understanding is essential with the management of a chronic disease.

The AIHW also reported that in 2014/2015, 39% of hospital admissions were due to a chronic disease. An admission to hospital requires a person to recall their medical history, this means people are asked about diseases they know nothing about, recall the names of tests and scans that they don’t understand and results that mean nothing to them. This causes problems for frontline medical staff and can result in a delay in diagnosis and people having unnecessary tests and scans which can be uncomfortable for them and costly for the system.

Currently you don’t own your own health information. The information your GP collects is owned by them. If you change GPs there is no requirement for your GP to share this, the same goes for your specialist, your physio etc. Your health information is currently not routinely shared between health care providers or the health departments in different states and territories.

A My Health Record provides an opportunity for health consumers to manage their health information. People can receive information to help manage a chronic disease electronically. They can read their health information multiple times in their own home and share it with family or friends who can support them manage their disease.

The opt in approach hasn’t worked as health professionals have been slow to come on board as have health consumers. Test sites did show with education and support GPs were able to increase the rate of people with a My Health Record from 15% to 70%. These results demonstrate a My Health Record is worth investing in.

Figure 1: http://compare-phc.unsw.edu.au/content/compare-phc-health-literacy-symposium-2016

Currently there are over 6 000 000 My Health Records none of which have been hacked. A My Health Record is a much-needed resource where you can access your health information when you want, that could result in a person receiving better care, making better health choices, achieving better health outcomes and

more informed health planning decisions being made. People need to look past the data hysteria (other large organisations hold important data that are not being scrutinised in the same way) and at the real benefits this can have for you as a health consumer.

 

Reference List

Australian Commission on Safety and Quality of Health Care: Health literacy: Taking action to improve safety and quality, retrieved 23^rd July 2018 <http://www.safetyandquality.gov.au/our-work/patient-and-consumer-centred-care/health-literacy/>

Australian Institute of Health and Welfare 2018, Chronic disease, Australian Government, retrieved 23^rd July 2018, <https://www.aihw.gov.au/reports-statistics/health-conditions-disability-deaths/chronic-disease/overview>

COMPARE – PHC Health Literacy Symposium (2016) Health Literacy for Preventative Care in Primary Health Care Settings, retrieved 23^rd July 2018, < http://compare-phc.unsw.edu.au/content/compare-phc-health-literacy-symposium-2016

Kessles R P C (2003) “Patients memory for medical information” retrieved 23^rd July 2018, <https://www.ncbi.nlm.nih.gov/pmc/articles/PMC539473/