Tracking your health data from cradle to grave

12 Jun 2024

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The data will see you now. The latest episode of For Tech’s Sake examines where we’re at with properly utilising health data and the challenges that come with that.

There’s no denying that data is extremely valuable. The growth of AI, automation and data analytics over the last decade have highlighted the need for more data to paint a more complete picture – whatever picture that may be.

When it comes to health, there are many benefits that can be reaped from using individual data in the right way. Even outside of hospital and medical settings, millions of people are using wearables such as Fitbits and Apple Watches to track their own health data. In fact, the Apple Watch received FDA approval for its heart monitoring data to be used in clinical trials investigating irregular and sometimes rapid heartbeats, known as atrial fibrillation or AFib.

But while users are clearly ready for their data to be used to maximise the benefits, legacy infrastructure and concerns around security remain as barriers to progression.

In an interview with earlier this year, EY Ireland’s Dr Mary Coghlan said there is “a potential level of frustration that data is not adequately shared”.

“This is a technical infrastructural challenge as well as a privacy and data management issue, with a bit of clinical governance thrown in for good measure,” she said.

“While members of the population can wear a 24-hour blood pressure monitor to guide treatment of hypertension for example, typically the device won’t ‘speak’ directly to health ICT infrastructure, so the data generated cannot be leveraged in real time or easily scaled for population level analysis.”

To give us more of an insight into how health data could be better used to benefit us from the beginning of our lives to the end, we heard from Prof Ciara Heavin, co-director of the Health Information Systems Research Centre at University College Cork and founder of CommPal, a software platform using AI to better allocate specialist palliative care.

She said it’s important that when people are creating innovations designed to improve the healthcare system that they keep those that will actually be using those innovation in mind.

“We really need to find ways to walk in the shoes of the healthcare professionals that are delivering these services every day, understand those problems and design for their problems, not the problems we think they have.”

The episode also talked about what could happen to your health data after you die. While some advocate for donating health data just like organ donation, the complex nature of how data can be used and reused could create serious ethical dilemmas.

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