Digital tools to play key role in transition to data-driven diabetic care

Diabetes registries collecting patient data and new digital tools directly used by patients are considered by stakeholders some of the best options to improve the quality of diabetes care ahead of the EU’s health data revolution.

About 32.3 million adults were diagnosed with diabetes in the EU in 2019, and while countless people struggle to get help managing their condition, some are never diagnosed.

A set of policy recommendations drafted by the European Diabetes Forum (EUDF) insists on the importance of digitalisation, data registries, and integrated care to change the approach to diabetes management and improve patients’ quality of life.

Digitalisation, in particular, promises new developments in diabetes care after the recent unveiling of the much-awaited European Health Data Space (EHDS), which is expected to revolutionise the European healthcare system as we know it.

“We are in the pocket of our patient: we never had such a good opportunity to be so close to our patient,” explained Peter Schwarz, a doctor at the University of Dresden, at the launch of the policy recommendations.

According to him, this new digital potential also brings new challenges and the need to rethink how digital tools are used to address the need of patients.

“Digitalisation is not about providing new opportunities for physicians or about providing new ways to store data. It is a big chance to address the need of our patients,” he stressed.

For instance, making these new apps accessible to all patients remains a thorny issue.

“The question of whether a certain service is available to everybody who needs it is very important. We don’t want to run the risk that [the service] cannot be used by the most vulnerable parts of the population,” said Stefan Schreck, deputy director-general at the European Commission’s health service DG SANTE.

He added that a key policy aim of the EU executive for all the initiatives in this area is about not widening the gap between those in a better position to access these digital tools and those not that exposed.

In the recommendations, the EUDF experts suggested the development of a best practice access pathway, including processes to enable or accelerate access to digital health apps harmonised at the EU level.

Improving access to diabetes care will fit into EU’s health data space

Diabetes patients will be among the beneficiaries of the much-awaited European health data space seeking to make good use of healthcare data across the bloc, according to policymakers and health stakeholders.

Interoperability and patient involvement

Another aspect that needs to be addressed is the interoperability between the many apps available on the internet, particularly if patients decide to move from one digital tool to another.

To have a relevant use of the apps, Finnish MEP Sirpa Pietikainen also pointed out that interoperability between apps and public healthcare systems must be ensured. This aspect is addressed in the EHDS proposal, which is expected to make the exchange of data between the different management systems and across borders easier.

Pietikainen also mentioned the importance of “bringing patients to the app’s process”. In other words, apps need to be accessible for everyone and not only for people used to technology or technical devices.

She said that isolated and old people are the “target group that should beneficiate most of these apps”, as well as from digital devices and remote doctors’ visits; otherwise, it would lead to a digital gap.

Schreck also welcomes the involvement of diabetes people in the development of these apps. “It is clear that digital tools need to be designed in such a way that patients like to use them,” he said.

Cajsa Lindberg, who is living with diabetes, shared her feelings on the different applications that already exist. “The most successful ones are the ones that are automatic, and data doesn’t have to be logged.”

She also explained that “diabetes is a disease where your decisions are made every few minutes. Therefore, the most successful apps are the ones that help people “in the moment”.

According to her, people living with diabetes and diabetes associations should be involved not only in the development of apps but also in other aspects of diabetes disease management. “The biggest mistake you can make is not involving people with diabetes” she said.

Data protection

However, the priority remains protecting patients’ data which requires a “strong data security regulation that we more or less have in Europe”, said Pietikainen, who also mentioned the “strong responsibility” of the companies storing data.

“I see tremendous possibilities of the data space for the benefits of people”, she concluded.

The trust component remains crucial for the digital space uptake, as the European Commission highlighted in presenting the EHDS proposal. The EU executive suggested the need for an additional layer of security protection compared to the already robust EU’s privacy framework.

“We know very well that often the GDPR is interpreted in different ways in different member states, which makes the transport of data more complicated,”s said Commission’s Schreck.

“The important thing is that there is a balance between sacrifices you make in sharing your data and the benefits you get back,” the Lindberg pointed out.

Commission wants GDPR+ protection to facilitate health data revolution

Data protection, citizen rights, and digitalisation are at the forefront of the revolutionary European Health Data Space (EHDS) presented by the EU executive on Tuesday (3 May), according to involved stakeholders.

Untapping the potential of registries

Diabetes registries also play an essential factor in determining successful future policies and, together with electronic health records, are also included in the EHDS proposal.

National and even sub-national diabetes registries are used mainly for surveillance, clinical management or improving the quality of care, and they could benefit from digital automatisation.

Diabetes registers can inform decision-makers in real-time on health care resource allocations with an added value to the quality of diabetes care.

“It needs to be a sense of urgency to make this work,” Robert Heine from pharma company Ely Lilly said, suggesting the importance of establishing a European forum where all health data registries can be discussed.

Schreck mentioned some projects already at hand in the European Union, such as the European Cancer Information System and the European Rare Disease Registry platform.

“These cannot be used directly for diabetes but can give some inspiration for how to set up a registry and for what can be done at the European level to assist people in the member states to set up such registries and to ensure the collection of data across borders,” he concluded.

[Edited by Alice Taylor]

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