Privacy – enabling trust and confidence in digital health

What's the collective noun for a group of healthcare providers? A horde? A congregation? Certainly not a gaggle. I think it should be an orchestra – just as an orchestra is made up of distinctive yet harmonious sections, so too is the healthcare industry.

Patient talking to doctor

Recently, at the Sydney North PHN workshop, an orchestra of healthcare providers watched expectantly, waiting for me to pick up my baton, set the tempo and begin:

"The vast majority of people in this room did not get into the healthcare industry to work with computers. Your priority is your patient. Am I right?"

The pharmacists nod their heads, the general practitioners give a bit of a chuckle, and the practice nurses smile. Good, we’re in agreement.

I've been a privacy advisor for digital health for five years, and no presentation I make is ever the same. Yet, there is one consistent element with every audience: privacy is a priority. I see that as one of the reasons why some providers have not dived head first into adopting digital health. Those providers want to be absolutely sure that the trust their patients already have in them to uphold privacy is not eroded.

In 2013, the Federal Privacy Commissioner conducted a survey of community attitudes to privacy. Among other things, the 1000 participants were asked to state the extent to which they trust 12 different types of organisations. The most trusted type of organisation for handling personal information was health service providers, with 90 per cent of Australians saying they are trustworthy. Unsurprisingly, social media came bottom of that list, followed closely by debt collectors and real estate agents.

I don’' find these results unexpected, but I do find them fascinating. Health information is one of the most sensitive types of personal information – it can include some of the most intimate details about a person’s life. If health information ends up in the wrong hands it can result in serious consequences for the patient – including social stigma and discrimination. It’s high risk, so the fact that the health industry is considered the bee’s knees in terms of privacy trust for Australians should be celebrated. Every player in the healthcare industry who puts privacy as a priority is furthering the integrity of the health system.

Privacy clearly enables trust for patients. But privacy also enables adoption of digital health by providers. In using digital health, providers need to have confidence that the digital health product they are using has been designed with privacy in mind and that it helps them uphold their privacy obligations to a patient. But how does that confidence grow?

During my presentation at the Sydney North PHN workshop, I quoted an opinion about a new technology introduced into the medical industry:

…That it will ever come into general use, notwithstanding its value, is extremely doubtful; because its beneficial application requires much time and gives a good bit of trouble both to the patient and the practitioner…

This was an opinion printed in The Times newspaper in London in 1834, and it was about the use of the stethoscope. The stethoscope was seen then as a disruption and intruder into the usual workflow of the provider. Yet today, two centuries on, the stethoscope is used to symbolise medicine.

But we can’t wait two centuries for digital health to be accepted as the norm, the Australian community need to realise the benefits now – better information sharing, more time with patients, and increased efficiencies. Better use of data and technology can help people live healthier, happier and more productive lives.

This is why workshops like those held by the Sydney North PHN are critical. It allows me to educate providers on the privacy framework around digital health and the My Health Record system. But, more importantly, it gives me the chance to listen to providers and learn how the Agency can better support the industry to drive provider trust and confidence.

Vanessa Halter is a senior privacy specialist for the Agency. Vanessa has been involved in the design and implementation of a number of national digital health products, and also provides advice on managing medico-legal impacts on digital health adoption.

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