Patient-Centred Digital Health Systems: OECD Insights on Digital Care and Patient Engagement

The Organisation for Economic Co - operation and Development (OECD), in its latest report, Building People Centred Digital Health Systems, clearly explains how digital technologies are being used in healthcare and how they can make health systems more responsive to patients' needs, rather than focusing solely on technology implementation.

The report demonstrates that digital tools alone are not sufficient to achieve patient-centred healthcare. They must be complemented by supportive policies, patient awareness, data accessibility, and digital competencies to genuinely improve people's experiences within the healthcare system.

EATRIS (the European Research Infrastructure Consortium for Translational Medicine, a non-profit organisation) plays an important role in global health initiatives. The organisation has also incorporated this report into its agenda and knowledge-sharing activities, recognising its relevance and considering it valuable enough to share with the broader community.

EATRIS jau vairākus gadus aktīvi attīsta digitālās veselības, datu pārvaldības un datu drošības For several years, EATRIS has been actively advancing digital health, data governance, and data security across the European translational medicine ecosystem. The organisation maintains a dedicated Data Champions network that promotes best practices in research data management, the implementation of the FAIR (Findable, Accessible, Interoperable, Reusable) data principles, and the secure sharing of data between research organisations and healthcare institutions. At the same time, EATRIS contributes to the development of digital health policy by promoting standardisation, data interoperability, trustworthy data governance, and the protection of patient data in line with European Union regulations.

1. Electronic Health Records (EHRs) and Patient Awareness

Data from the OECD PaRIS (Patient - Reported Indicator Surveys) reveal a significant gap: although Electronic Health Records (EHRs) are widely implemented, only 18% of patients are aware that they can access their health information online. This indicates that technological infrastructure alone does not guarantee patient engagement or control over personal health information.

Conclusion: patients need to understand both their rights and the tools available for accessing their electronic health records.

2. The Impact of Poor Information Exchange on Patient Experience

When health information is not readily shared between healthcare professionals and institutions, patients are often required to repeatedly recount their medical history. This negatively affects: trust in the healthcare system; quality of care; patient - centred care indicators.

Patients who regularly have to repeat their medical information rate both the quality of care and their trust in the healthcare system 15 - 20 percentage points lower than patients who do not face this burden.

Conclusion: continuity of information and interoperability between healthcare systems are essential for delivering truly patient - centred care.

3. Patient Control Over Health Data and Self-Management

Even where digital technologies are available and integrated, patients frequently lack the tools and knowledge needed to use their health data effectively. Key challenges include: limited awareness of how to access Electronic Health Records; technical barriers, including limited opportunities for data reuse; digital literacy and health literacy challenges; concerns regarding data privacy and security.

Conclusion: expanding digital technologies is not an end in itself - it is equally important that patients are able to use them effectively.

In this context, high-quality data governance becomes especially important. Through its initiatives, EATRIS emphasises that patients' trust in digital health systems depends on robust data security, transparent data use, clearly defined access rights, and internationally harmonised data standards.

4. Good Practice Example: Patient access to national health data - Australia's My Health Record

The report highlights Australia's My Health Record system, which enables patients and authorised healthcare providers to access a comprehensive medical record, including prescribed medications, laboratory test results, and vaccination records. This improves transparency and supports shared decision-making between patients and healthcare professionals.

5. PaRIS Data: Patients' Perspectives on Digitalisation

Data from 107,011 patients across 1,816 healthcare practices in 19 countries were analysed, including both Patient-Reported Outcome Measures (PROMs) and Patient - Reported Experience Measures (PREMs).

Key findings:

• Digital technologies often operate "behind the scenes" but fail to benefit patients if they are unaware of them or unable to use them.

• Digital health should continue to be evaluated through the lens of patient experience, not solely through the availability of technology.

EATRIS adopts a similar approach, emphasising that successful digital transformation in healthcare depends not only on technology deployment but also on secure data infrastructures, common standards, the digital competencies of researchers and healthcare professionals, and the promotion of patient trust.

🔹 Summary - Key Insights

• Technology is only a tool - by itself, it does not transform a healthcare system into a patient - centred one.

• Patients need to be educated and informed about their rights regarding access to and use of their health data.

• System interoperability and data accessibility are critical factors for patient - centred care.

• Patients still do not use digital health solutions to the extent that they could.

• Secure data governance, interoperability, and common standards are prerequisites for trustworthy digital healthcare.

• EATRIS’s experience with the Data Champions network, the implementation of FAIR data principles, and the development of digital health policy demonstrates that patient-centred digitalisation cannot be achieved without equal attention to data quality, security, and user competencies.

For digital systems to become truly patient - centred, political commitment, clear data governance frameworks, patient - oriented digital platforms, and the development of digital competencies are required.

Information provided within the framework of the project “RSU Participation in the Horizon Europe Programme” (No. 1.1.1.5/3/25/I/014).

*Project No. 1.1.1.5/3/25/I/014

Source: OECD (2026), Building People‑Centred Digital Health Systems (a1df0046‑en.pdf), OECD Publishing, 25 March 2026.