Maintaining patient trust in health data sharing in a Covid and Post Covid World.

Why it’s time to accelerate health data sharing in Europe.

Data sharing has played a vital role in?Covid-19 research and planning. Contact tracing apps, for example, have helped governments to gather data about the spread of COVID-19, as well as providing rapid information about virus exposure to the general public. “The global pandemic has advanced our understanding of data sharing and the application of real-world data for disease modelling and predicting treatment success in different populations, which in turn can inform smarter, more tailored decisions for patients.” says Dr. Stanimir Hasardzhiev, General Director, National Patients’ Organization Bulgaria. Real-world data has also furthered our understanding of existing medicines and?informed the development of future treatments, which can improve care and update policy, in turn improving patient outcomes. At the diagnosis level, data insights can help to provide a deeper understanding of a disease.?Comprehensive genomic profiling, for instance, has enabled more accurate and earlier cancer diagnoses and enabled personalised treatment.

Tackling Europe’s data sharing status quo.

Today, many EU citizens and healthcare professionals still cannot access their health data in a digital format - or only a limited set of data are digitally available. European countries organise health data access through different means. Some member states have patient or healthcare professional portals that are regional or national, while others have apps or personal data space solutions.?This needs to change. According to Stanimir, “European health systems must respond more efficiently to the exponential increase of patients with chronic diseases.?Patient health data sharing has the potential to transform European healthcare systems, as long as citizens’ privacy is guaranteed.”

Europe is facing a decisive moment as?we move towards the expected adoption of a long-awaited legislative proposal to set up a European Health Data Space in 2022. The creation of a European Health Data Space is one the European Commission’s key priorities. “The key benefit of electronic health records (EHR) is that they provide easy access to a comprehensive record of a patient’s health history. They allow the dots to be connected more quickly, meaning that fewer patients fall between gaps in care provision. There is also a huge opportunity to improve patients’ access to their own data, as well as to empower patients by offering digestible information about their own health,” says Stanimir.?

Thus, equally crucial for patients is access to their own health records -?90% of EU citizens want access to their health data. But several barriers to health digitalisation still exist in Europe. Public concerns about data?ownership, privacy and security are widespread - notably, with regards to cyber-attacks, and data getting into the hands of legitimate and illegitimate third parties. “Another major hurdle is the interoperability of data. Health data is collected in such a way that the format is different everywhere. This makes it difficult to understand the meaning of health data in different contexts. Interoperability standards are required to promote wider use and understanding.” says Stanimir. “Common standards are crucial to boost and improve the exchange of information, as well as safe and secure data infrastructure.”?

Putting patient concerns at the heart of data sharing.?

Most patients are willing to share their de-identified data for planning and research if they are sure that it will not be used for marketing or insurance purposes. They also want reassurance about organisations’?motivation for requesting?data and their ability?to protect and secure it,particularly when those using the data are?employers or insurance companies. Stanimir says, “We must address these patient concerns and strengthen public safeguards around the use of digital health data to avoid growing inequalities in medical outcomes. Still, the strongest driver for patients to share their data is the benefits that come from data analysis: advanced knowledge and understanding of their chronic conditions and, in turn, improved treatments.”?Patient groups have a key role to play in clarifying who should have access to patient data and how it should be stored and used. . They can advocate for patients’ rights to control?their own data?- for example their right to have their data?deleted - and communicate to patients the advantages of making their data available. Other digital health ecosystem stakeholders also need to take action to address patients’ concerns to ensure individuals feel confident sharing data and using emerging technologies. A collaborative effort is required to develop the essential infrastructure and applications to enable countries to unlock the power of health data to promote health and well-being for everyone.

Spokesperson: Dr Stanimir Hasardzhiev, General Director, National Patients’ Organization Bulgaria