Why I support My Health Record after my husband’s terminal illness
By Helen Pitt
When I lived in northern California, not far from Silicon Valley, my husband enrolled in a masters program in digital technology and in early 2005 developed a program similar to the Australian government’s My Health Record.
Because of his experience living with a brain tumour for a decade he and his study partner created what they called an “e-health record” a tool which he knew from practical experience would help anyone with a life threatening or chronic illness.
We’d both spent so many hours in doctors’ surgeries, hospital rooms and specialist clinics with him recounting his treatment regimen and health history: the radiation doses he’d had, the chemotherapy and immunotherapy regimes. The precise details not only helped his clinical team with his treatment but also helped determine which clinical trials he was eligible for.
His doctors, some of the best brain surgeons and neuro oncologists in the world, thought it was a brilliant idea.They got him introductions to venture capitalists in Silicon Valley and Stanford University medical specialists who were keen to fund the idea.
He was paid to fly to Washington’s National Institute of Health to examine the clinical trials he was eligible for, and while there met healthcare professionals who were really bullish about his idea. He’d become a healthcare advocate in the later stages of his life, working for a San Francisco non-profit established to help people with AIDS, and everyone from clients to the CEO supported him.
As controversy continues to swirl this month around the right to privacy, data/accessibility issues surrounding the program, I was plunged back to the July 13 years ago when he died.
May 18, 2005 was the day I had to call in hospice services to our home to help care for him as I was struggling to cater for his healthcare needs and that of our energetic toddler. Everyone in that hospice program we came into contact with praised his program and wondered why no one had thought of doing it before.
As he slipped into a coma in our home, I struggled to remember the doses and types of medications he’d taken which were the questions I was asked constantly. I was in deep shock but lucky I had his e-health record. The hospice people, our doctor, friends and neighbours who filled our home in his final days, spoke glowingly of his foresight. Sadly, it has taken some time to gain greater recognition and worldwide use.
I assume people who oppose My Health Record, such as politicians Walt Secord and Tim Wilson, have never walked with a loved one on the difficult path of a terminal illness. Or had a chronic illness they’ve needed to manage themselves.
I see their arguments as the hubris of the healthy, because they just haven’t been in these situations themselves. If they had, they would see the risk/benefit ratio is far greater to have such a tool than not.
Yes, like everything in our digital world it is open to misuse, much in the way as Facebook data and online bank records. But I would argue the world is a better place for digital technology, despite the potential for breaches of privacy. I plead the philosopher John Stuart Mill’s utilitarian logic in this case: it is about the greatest amount of good for the greatest number of people. Especially those struggling with illnesses and their carers.
Helen Pitt is a journalist at the The Sydney Morning Herald. I am grateful to Helen for allowing me to tell her story in Fifty Five Plus. It was most enlightening and I now feel that keeping records is essential.