#EPFCongress2021 Q&A with Cecilia Bonefeld-Dahl of DIGITALEUROPE

We sat down with Cecilia Bonefeld-Dhal, Director-General of DIGITALEUROPE to discuss how tech and health communities can work together to ensure digital solutions create real value for patients in Europe. Mrs Bonefeld-Dahl will speak at the 29 October Plenary Session "Shaping EU Health Data Policy with patients and for patients" at the EPF Congress 2021.

What attracted you to become a speaker at the EPF Congress 2021?

The European Patients' Forum has a great track-record in voicing the needs of a large and diverse community of patients in Europe. I look forward to being there to hear their concerns and to exchange ideas on how the tech and health communities can collaborate further to ensure digital solutions create real, tangible value for patients.

New technologies such as artificial intelligence will need data, and patients have a right to be confident that their data is secure, that privacy is respected, and that artificial intelligence (AI) is used ethically. So we need to foster a culture of trust and collaboration if we want to realise ambitious initiatives such as the European Health Data Space. DIGITALEUROPE’s Executive Council for Health (DECH) has taken the EHDS up as a key priority.

Forums like the EPF Congress are exactly what we need to encourage trust and dialogue between all those involved – starting from patients to companies working to provide these solutions, to legislators who have the responsibility to get the right framework – so that everything we do has patients’ needs at its centre.

COVID-19 accelerated the digitalisation of health and care and offered a sneak peek of how digital health can positively impact life of millions of patients. Based on the pandemic, what can we learn going forward to ensure our health systems are ready to fully embrace digital health?

The pandemic exposed the difficulties to get important data for vaccine research over borders in the EU. The GDPR, was created to ensure sensitive data can flow in the single market but in its implementation Member States were able to create different national rules. We need to address this fragmentation. It is the same fragmentation preventing a patient from sending their health records to an expert in another EU country.  Should it not be up to the patient to decide where and for what purpose their data is being used? In our opinion it certainly is.

The disruptions we have seen during the pandemic - 90% of caregivers had to reduce their healthcare services, 50% of cancer and diabetes patients struggled to get treatments – are unacceptable. We must be able to provide healthy lives at all times and that’s why technology and data have such a major role, helping monitor and prevent diseases and delivering healthcare services no matter where patients are.

But we have also seen that if the will is there, things can be done. The EU led the way and governments cooperated through track-and-tracing agreements, Digital Covid Certificates, and pan-European platforms to exchange patient information – faster than ever before.

It’s critical that all this work doesn’t get lost and that we learn our lessons from the pandemic. The European Commission has recently announced its goal of 100% of European patients being able to access their Electronic Health Records by 2030.

This is great news, but there’s a lot of work to get there. Less than one in five EU citizens are using online health services, and only 20% of general practitioners regularly exchange patient data with other healthcare providers. At DIGITALEUROPE, we have set mid-decade targets to ensure we stay on the right track and the Commission should too; we are keeping a close eye on the Path to the Digital Decade. Perhaps patient groups can help in setting out more and specific targets?

And let’s not forget that diseases don’t know borders. Patients must be able to access their health records across Member States, so interoperability of data and a harmonised data sharing framework are essential.

What are the options and risks of patient data sharing and how can we define them?

Patients should gain more control of their data and benefit from a robust framework that respects privacy and ensures their information is handled securely. They deserve to be well-informed, to understand what is being done with their data and why, and for this we need to increase digital literacy. In the same vein, healthcare professionals need to be aware of digital technologies, to see their value for patients, and be encouraged to use them.

So as I said before, trust is the key. European Member States still lack the digital infrastructure to collect, analyse and share health data in a secure way. This means that health data often remains locked away at the regional and national level and it cannot be used for, say, increasing accuracy of medtech devices, cutting down bias in AI solutions, and accelerating research into vaccines and treatments.

The thing is, this is not new. Public and private partners have been working on such trust frameworks for years. But without common and interoperable standards, guaranteeing a high quality of data, and making sure the data is exchanged in the same “language” using the same “grammar”, innovation will be held back.

In 2020, 71 per cent of survey respondents reported to the European Commission that in gaining access to data for research (i.e. secondary use), they experienced “high time and interaction costs”, losing valuable resources.

In your opinion, what should be the role of patients in the digitalisation of our healthcare systems?

Patients need to be at the centre of the transformation of our healthcare systems. Digital is helping us shift from old ways of treating symptoms to a more modern and much more personalised approach of preventing and monitoring. Tech, pharma, medtech, health providers and professionals, and the policymaking and regulatory communities should keep up the dialogue with patient communities to understand and address their biggest unmet needs.

Digital can meet needs and reduce burden at the same time. For example, it would be a massive improvement if patients – especially those affected negatively by outside conditions – could avoid hospital visits while improving their treatment.

This is the case in home-based treatments for a variety of chronic respiratory disorders and diseases such as sleep apnoea, asthma and chronic obstructive pulmonary disease (COPD).  Digital devices feature capabilities that allow collection of data on treatment delivery and how the device is being used by the patient. Treatment quality data can be transferred remotely and analysed to provide valuable insights to healthcare providers on whether the treatment protocol is effective.

Data can also help patients understand how their condition is changing and to recognise how their behaviours are either positively or negatively influencing their condition. This way, patients gain control over their disease and become involved in their treatment.

Involving patients from the beginning to the end of the development of digital health solutions is also crucial, to ensure that any issues with accessibility or understanding are addressed early.

Of course, connecting the dots is just as important, and for that we need to bring together the different data that companies collect from various sources, in order to generate insights that can identify innovative solutions to patient problems.

Data from trusted sources such as environmental agencies can be combined with patient data from a device to trigger notifications to patients of conditions which may negatively affect their well-being, such as high pollen count or weather conditions.  Patients are therefore enabled to make informed decisions about managing their condition. 

 To learn more, visit the DIGITALEUROPE website.

Check out the EPF Congress 2021 Programme.