Decisions driven by health data: why access is the key to unlocking patient empowerment.

  • 3 minutes
  • Posted on 25.10.2023

Decisions driven by health data: why access is the key to unlocking patient empowerment.

Gozde Briggs

Programme Manager, European Patients'​ Forum

You only have to look at the popularity of wearable fitness-driven devices to know that there is an increasing appetite for one’s own data. Watches or rings that go beyond step count and measure heart rate variability, track sleep, monitor blood oxygen levels and so much more, have become a desirable accessory for the masses.

Patients and healthcare professionals also widely use connected devices which enable diagnosis, and support clinical care practice and decision-making, by leveraging the benefits of digitalisation to provide better, faster, and more efficient healthcare. Glucose monitors for people living with diabetes or pacemakers, such medical technologies are increasingly integrated across a variety of electronic platforms and information systems. Why? And how does access to this kind of data help change people’s behaviours to drive positive health outcomes?

Generally speaking, people want to be in good health and live a long life. While public health advice on beneficial lifestyle choices is commonplace, it is not personal and therefore, not urgent. Knowing or feeling like you ‘should’ do something because it’s accepted knowledge is not the same as seeing data about your own body’s reaction to different stimuli. For example, understanding the impact of alcohol and caffeine on resting heart rate and resulting quality of sleep may empower people to make more intentional choices around their drinking habits.

Yet health data derived through skin contact alone is limited. Imagine having access to more comprehensive medical data. Your full medical record, accessible in one place, regardless of where you received care.

That is the promise that the European Health Data Space (EHDS) offers to EU citizens and people living with diseases.

Health data without context can be a worrying thing, so it is important to recognise that accessing one’s own health information does not diminish the role of healthcare professionals in any way. Instead, it has the potential to enrich the conversation between the professional and the patient. Crucially, that conversation must still exist.

Through having access to and control over one’s data (to add and even correct information where necessary), an individual can be empowered to play a more active role in making informed decisions when it comes to their health – just as we have seen on a smaller scale through the use of wearable devices. Whether blood test results, trends in disease markers over time or treatment information, when layered with an individual’s everyday experiences, data may yield new insights only obvious to the person that it belongs to.

As digital technology continues to advance and is applied to multiple health-related purposes, the EHDS represents an important, regulated framework and infrastructure to allow the aggregation of health data from all kinds of sources.

If being able to manage a disease well is a gift, then preventing disease is an even greater one. Giving citizens and people with health conditions the opportunity to access their data at the time that they want it, encourages people to be proactive about making healthcare decisions. Decisions that could ward off largely preventable diseases or reduce the impact of existing ones.

After all, knowledge is power. Data saves lives.

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