How many times in the last year or two have you heard that patients should own their data or have control over their data? These statements sound simple but are much more complex once you start to look at the implications they might have in practice.

In June,  the European Patients’ Forum Congress took place in Brussels. The topic was the digital transformation of healthcare, data sharing, and the role of patient organizations in this story.  Today you will hear a little bit about what patients think about data and data sharing, from various participants at the congress. 

The Promise of the European Health Data Space

Europe has big plans for data access and cross-border sharing. by 2025, patients should have access to and control over their medical data regardless of where in Europe they are seeking medical care. That is the idea behind the European Health Data Space - the upcoming EU policy that aims to make patient data available to healthcare providers in a structured, standandardized way. The use of data standards is what should enable clinicians to understand details about patients’ diagnoses regardless of the language. Language and country-specific structures of healthcare systems in Europe have been one of the main factors hindering the easier flow of data across Europe. But things are about to change, emphasized EU Commissioner for Health and Food Safety  Stella Kyriakides. 

“We need to empower patients to take charge of their digital health.With the European health data space patients will have access, and the right to use the electronic health data in a format that can be accepted across the EU. Patients will be able to share data with a health professional of their choice even across borders. Patients will have total control of their own data. There will be able to restrict what part of their medical history is shared and with whom, and they will be able to connect correct any errors in their health records. And to ensure total transparency patients we'll be able to see who has access to health data,” the Commisioner mentioned in her welcome address.

The Meaning of Data Sharing

EPF represents 77 European patient organisations, which together represent the interests of an estimated 150 million people with chronic diseases. Different people have different opinions about the definition of data sharing and how it should look like. As emphasized by Peter Kapitein, a Patient Advocate and Executive Board member of Inspire2Live, which is a cancer patient advocacy group, strongly believes data should be more easily sharable. Lack of sharing isn’t without consequences. “There are always hidden costs of saying NO. So not making data available doesn't mean we do no harm. If we don't make data available there is harm. That is what I call the hidden costs of saying no.”
When the European Health Data Space will be set up, anonymized data should be available to researchers, as mentioned by Martin Dorazil, Deputy Head of Unit, DG SANTE at the European Commission. This would be controlled by a regulatory body and each research request would have to be detailed and clear. Researchers also won’t be able to download any data from this sandbox, only results related to their research. 

Better Information for Medications

Another novelty in the European space is so-called electronic product information or ePI, a project led by the European Medicines Agency. The idea is that regardless of the country an individual visits in Europe, she should be able to access medication information in their own language when you pick up medications in a pharmacy. Given the high rates of medical problems related to medications, this aims to improve medication safety. 

Data As Common Good

If the congress in 2021 was focused on digital health and data literacy, many thoughts in 2022 were dedicated to understanding how can patients share their data, do they want to share and control their data. Cancer survivor Viktoria Prantauer mentioned how she would want to share her data for other patients to benefit from research based on that data, but when a patient comes home from the hospital with a pile of papers it is hard to know how and where data should be shared. “I think the data should be common good. I think that there's too much discussion about the monetary value of data. I truly think data should never, ever equal money. Because if data equals money, then companies or people with most of the money can buy data and keep it for themselves. They can either drive their innovation and maybe share it or maybe don't share it. If everyone can use it and access it, this would drive innovation because only if people have access to data, then we can be sure that, all the perspectives are included.”

The Unrecognized Power of Patient Organisations

By the end of day two, it has become clear that patient organizations play an important part in data-related policy making. Topics around data control, sharing, and access can be sensitive and emotional. So when asked to share their data, trust plays an important role. “This is where the role of patient organizations can play a crucial role,“ mentioned Viktoria Prantauer.

Ivett Jakab, Former President of the European Patients’ Forum Youth Group reflected that patient organizations need to realize their potential. “My main takeaway as a patient and as someone who is working with patient organizations on both the local and the European level is really that it is time for patient organizations to realize the value they have in this research ecosystem. They should see that the data they gather, which is something that is very natural for them, has huge potential and can really take them up to the partner level that we should be.”

We often hear about patient centricity and patient perspectives, without patients in the room or at the table. But without patients, digital transformation will not happen, said the EPF Executive Director Anca Toma in her closing remarks. “What I heard a lot these two days was trust, consent, inclusiveness, collaboration, conversation. These are the words that I hear again and again. The digital transformation of healthcare will not happen without the involvement of patients and without the involvement of the patient community.

We're all patients, but the patients are not patients all the time. It all impacts our quality of life. As Peter Kapitein said yesterday, all the impacts our health, our future, our kids' health and our kids' future.”

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