Over a period of three years from 2013 to 2016, Renee Downman experienced the exceptional treatment of Australia’s healthcare system for two serious health conditions. But what was different in those few years? Enter My Health Record.
In 2013, the young fitness instructor was diagnosed with Ewing Sarcoma, a rare disease where cancer cells are found in the bone. Renee was living on the stunning coastline of the Sunshine Coast, 100 kilometers north of Brisbane. Treatment was in Brisbane and with the side-effects of ‘chemo brain’, extreme fatigue and feeling very sick due to complications from the combined treatment of egg preservation pre and the post initial chemotherapy treatment, her mother Sharon, a nurse, gave up her job and became her fulltime carer for 12 months.
On reflection, Sharon says that "she could write a book called How to survive cancer and I don’t mean the diagnosis because the challenges of repeating your health story, carrying records with you, lack of money, navigating your way through the health system and finding all the different funding sources for services such as patient transport and accommodation were extreme.
“The health system has the medical treatment side of the experience sorted – but they don’t have the social work support. For example, someone from Lifeline came to tell me that I could stay in the hostel down the road when in fact the Cancer Council paid half my accommodation and Patient Transport scheme paid the other half. If I wasn’t a professional in the health system I wouldn’t have known about these services. If you don’t know anything different, you are just left in limbo.”
After a reasonably successful treatment, yet still with ongoing side-effects, Renee miraculously fell pregnant in 2016. Now living in Cairns, she happened to be living in one of the regions undertaking ‘opt-out’ trials for the My Health Record. This was a great stroke of luck, since about 98 per cent of the locals took up the opportunity to have a My Health Record automatically created for them, which meant that clinicians could enhance their workflows in this new environment.
Renee’s GP Dr Amanda Blinco, obstetrician gynecologist Dr Liz Jackson, in collaboration with the Royal Brisbane Hospital, kept track of Renee’s health information via her My Health Record. Dr Blinco entered her health information and rounded up all the specialists’ information to compile a comprehensive medical history, enabling Renee and her clinicians to better understand her condition. Having your medical history in the right order is important to get the right picture.
“All of these fantastic professionals could keep up-to-date without me having to re-tell my story every single time, which for me was amazing because when I went through the cancer treatment that wasn’t the case – every time I went to a doctor I had to reiterate my story which was hard because I was sick and couldn’t tell my story properly. I couldn’t remember everything that was going on, that was hard.
“This time, with all three providers knowing what was going on, they could all talk to each other without me having to say over and over again – and without me having to be there.
“It is so much easier being a patient now. Some key information is no longer going to be forgotten. And what if the thing I forget to tell them is the one thing that is causing my problem?
“I feel my health is safer, rather than in 2013, all my doctors did not know what was going on and if I forgot to say something it was overlooked,” says Renee.