patient access, data

At the end of eHealthWeek 2017, a lively discussion illustrated that patient access, privacy, and data sharing remain topics that need to be discussed more broadly in order to make eHealth a success for everyone.

[Valletta, MALTA] Digital health solutions should be for everyone, but so far they aren’t: “My mum is not IT-oriented, and she is not interested in accessing health records online. Let us not create a digital divide,” said Antoinette Calleja from the Maltese Ministry of Health. In order to leave no one behind, targeted communication strategies were needed, she argued, that address different age groups in their respective social environments.

Ain Aaviksoo from the Ministry of Health in Estonia agreed in principle: “The future is already here, but it is unevenly distributed.” This, he suggested, should not be a reason to stop going forward, though. What was needed, he said, was a legal framework, technology, and data governance, but in the end, for each country, region, or user group, individual approaches within the given framework will be necessary. In other words: One-size-fits-all works neither in Europe nor in an individual country nor in society.

As an example of how Estonia is trying to stay at the forefront of digital health, Aaviksoo mentioned a pilot project that is currently testing whether it makes sense to use private blockchain within the context of the national infrastructure. This, he said, would add another privacy level on top of the government guarantee that data is safe. It might not be for everyone, but it is likely to be welcomed by some.

For Antoinette Calleja, privacy, like citizen access, is another area where broader discussions and possibly legal action will be necessary. The European Data Protection Directive goes in the right direction, she said. But she questioned whether governments and regulators are prepared to enforce the legal rights that citizens will get by way of the Directive. Furthermore, citizens who used digital health tools like, for example, monitoring apps were often not awar of the potential privacy threats – illustrating an urgent need for communication efforts in this field, too.

Natasha Azzopardi Muscat, President of the European Public Health Association, said that, in her impression, societal discussions around eHealth were both intensifying and heading in the right direction, and she encouraged everybody to continue: “There are enormous potentials and rewards to be gained.”

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