We are facing two challenges in the Czech Republic that may also be relevant for other countries in Central and Eastern Europe. The first is related to the infrastructure for e-health and, more broadly, digitisation. This infrastructure has not been built yet, largely owing to implementation inefficiencies and capacity constraints at a national level. The second is the availability of health data for secondary use, such as research, measuring quality and safety, and understanding what is happening in the healthcare system.

Although open data has been part of the discussion among stakeholders, more needs to be done. This is where the European Health Data Space (EHDS) can provide direction. The EHDS is a proposed framework by the European Commission to establish common practices, rules and standards for the secure access and use of health data. The proposed framework will support patients' rights to access their own health data, as well as enabling data sharing within the health system and for secondary purposes such as supporting research, innovation and decision-making [1].

The EHDS can guide national discussions on methods of anonymisation of health data, and the levels of anonymisation required to make data public for research purposes and to monitor what is happening in the Czech healthcare system. Realising the potential of open data in the Czech Republic will start with enhancing the quality and efficiency of our health information system. Electronic health information is a basic prerequisite for true digitisation of the healthcare system. 

Primary use of health data

For patients, access to their medical records is a fundamental right. The EHDS proposal aims to give patients more access and control over their electronic health data. Although not necessarily revolutionary, it will improve how electronic health records are structured and stored, improving efficiency and quality.

Improved data access and quality will enable healthcare providers to better manage patients with acute and chronic conditions, facilitating more personalised and comprehensive care. Healthcare providers will have a clearer view of the health status of patients and will be able to provide better, more accurate diagnosis and treatment.

As the access to and sharing of standardised health data improves and digital health products and services, including telehealth, become more mainstream, physical visits can be replaced with virtual appointments, improving access for patients in remote or underserved areas.

Secondary use of health data

One of the biggest novelties is the secondary use of health data for innovation, scientific and policymaking purposes. The EHDS sets out a common EU framework allowing for the use of health data for research, innovation, public health, policymaking, regulatory activities and personalised medicine.

The secondary use of data will also support industry by enabling research and innovation. Timely access to high-quality health data, and a reduced administrative burden, can speed up the development of new medical products and treatments, enabling them to reach patients faster.

Improving trust and transparency

Open data will have far-reaching benefits in terms of quality measurement, quality improvement and transparency. At the moment, we know very little about the patient journey through the health system in terms of factors such as adherence to medication and continuity of treatment. We may be surprised by what is actually happening.

One example is patients with chronic renal failure. Of the patients who start chronic dialysis, approximately 50% come unprepared; they often arrive at the door of hospitals needing to be dialysed within hours of acceptance. The original hypothesis was that the healthcare system was failing to identify this 50% of patients, leading to discussions about increasing screening. However, based on data we analysed from one Czech insurer, about 90% of these patients had been diagnosed with chronic kidney disease, yet for some reason did not continue with treatment.

Another example is risk stratification. Similar to other EU countries, the Czech Republic has a high prevalence of diabetes. According to 2021 figures from the International Diabetes Federation, 7.1% of the population is diabetic [2]. Our clinical guidelines deal with all patients with confirmed type II diabetes in the same way—for example, screening is recommended for diabetic retinopathy once a year. However, there is evidence that some patients have a much higher probability than others of developing complications and should receive intense monitoring; equally, other patients are at lower risk and require less frequent monitoring. Such data being accessible will help with risk stratification and advance our understanding of vulnerable risk groups, allowing for efficiencies in response and costs.

Creating the infrastructure to support open data

Open data is essential for the future of healthcare. Unlocking the full potential of healthcare data will require the development and harmonisation of regulatory and legislative frameworks and infrastructure. We need the government to set the basic rules and invest in the infrastructure to advance the exchange and management of electronic health records.

A guest blog from Dr Pavel Hroboň, partner, Advanced Healthcare Management Institute, Czech Republic.

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The views and opinions expressed in this article are those of the authors and do not necessarily reflect the views of Economist Impact or any other member of The Economist Group. The Economist Group cannot accept any responsibility or liability for reliance by any person on this article or any of the information, opinions or conclusions set out in the article.