There are critical gaps between the digital technologies health systems implement and what patients are aware they can access. While electronic medical records are common in OECD healthcare systems (at least 95% of practices in 13 of 17 countries use them), only 18% of patients on average are aware they can access their own health records online through primary care. This reveals that technical infrastructure alone does not ensure meaningful patient engagement.
Limited exchange of digital health information severely undermines patient experience. When patients have to repeat information that should already be available in their health records, they report significantly worse experience across key patient indicators: trust in the healthcare system, experienced quality of care, and person-centred care. Positive ratings for trust and experienced quality were, on average, 15 percentage points (p.p.) lower among patients who had to repeat information than among those who did not, while person-centred care scores were 20 p.p. lower.
Lack of interoperability of health information systems forces patients to become data carriers. Even when electronic tools exist, disconnected systems that cannot communicate require patients to transfer information between healthcare providers, creating gaps in care co‑ordination and undermining the core purpose of digital health infrastructure.
Patient empowerment requires more than technology. Truly patient-centred digital health depends not only on electronic systems, but also on patient awareness of access rights, practical tools to retrieve and use data, support for health and digital literacy, and policy frameworks that prioritise patient control over the use of their own health information in line with the OECD Health Data Governance Recommendation.
Building people‑centred digital health systems
Digital tools have revolutionised healthcare delivery worldwide. Healthcare systems across OECD countries have invested heavily in preparing for this digital transformation through the implementation of electronic medical records, patient portals, and comprehensive digital health infrastructure. This transition promises substantial benefits: improved care co‑ordination, reduced medical errors, efficient healthcare delivery, and seamless sharing of critical information across healthcare settings.
Digital tools also serve as facilitators of communication and interaction between patients and practitioners (Granström et al., 2020[1]). However, as their adoption accelerates across OECD countries, their success depends on whether they function effectively for the people they are designed to serve. Human-centred design in digital health requires meaningful engagement with clinicians, patients, caregivers, and other stakeholders to ensure technology addresses real needs and enables prevention rather than creating new barriers (Tzimourta, 2025[2]).
The Patient-Reported Indicator Surveys (PaRIS) offer a distinctive perspective on how patients adopt and use information systems and digital health tools (OECD, 2025[3]). By surveying both primary care practices about their electronic systems and patients about their awareness of these same systems, PaRIS reveals critical insights into how information access and health data usability affect key patient experience indicators. The findings challenge assumptions about digitalisation of health and highlight a fundamental principle: technical sophistication is insufficient if patients cannot access, control, or use their own health information.
Interpretation of these responses requires caution across countries. In some health systems, patient access to health information is organised through national portal solutions or other central infrastructure rather than through practice‑level systems (Box 3). In such cases, patient-reported awareness may reflect the design of national digital health architecture as much as the availability of access through individual primary care practices.
This principle aligns with the OECD Recommendation on Health Data Governance (OECD Recommendation), which establishes that providing access to personal health data is central to patient-centred care (OECD, 2016[4]). Digital tools must offer clear information to individuals with transparent consent mechanisms or appropriate alternatives. Patient-centred digital infrastructure should empower individuals with control over the use of their own health information, not serve as a barrier between patients and providers.
The Patient-Reported Indicator Surveys (PaRIS) is an OECD initiative that systematically measures the outcomes and experiences of healthcare that matter most to people. The survey focusses on people aged 45 years and older living with chronic conditions who receive primary care. Data collection of the first cycle took place in 2023-2024, and results were published in February 2025.
PaRIS offers a unique multi-level dataset linking patient perspectives with the primary care settings where care is delivered. In addition to Patient-Reported Outcome Measures (PROMs) and Patient-Reported Experience Measures (PREMs), the dataset includes information on primary care practice characteristics (workforce composition, service provision, and digital tool availability) and patient background factors (sociodemographic characteristics, health behaviours, and healthcare capabilities, including digital health literacy).
PaRIS includes data from:
107 011 patients
linked to 1 816 primary care practices
in 19 countries
Note: For more information, including publications, questionnaires, and FAQs, see: www.oecd.org/health/PaRIS.
PaRIS captured a critical disconnection in health information systems by approaching the issue from two different perspectives: patients and healthcare providers. On the providers’ side, PaRIS asked primary care practices two questions: in which format they keep medical records of patients, and if the medical records are available when patients are seen. Simultaneously, the survey asked patients whether their primary care practice offers online access to these same records.
Figure 1 presents the proportion of healthcare practices reporting that patient medical records are stored electronically. It then shows the percentage of primary care practices indicating that medical records are available at the time of the patient visit. Finally, the graph displays the percentage of patients who are aware that they can access their medical records. The United States is excluded from the analysis due to the absence of data from primary care practices. Italy is presented separately from the other countries because the patient sample was drawn using a census approach and applied different eligibility criteria, while the practice sample was based on a convenience sample in the Veneto, Tuscany, and Emilia-Romagna regions. Finally, Saudi Arabia is excluded because data were missing for one of the categories analysed.
Availability of medical records at moment of consultation by health practice and patient awareness of their primary care centre offering access to medical records online
Note: Electronic medical record availability is measured at the primary care centre level, with the y-axis showing the percentage of practices where records are accessible during consultations. Awareness of online medical record access is measured at the patient level, with the y-axis showing the percentage of patients aware of this access.
Cross-country comparability should be interpreted with caution. Patient awareness is measured based on whether respondents report that their primary care practice offers online access to medical records. In some countries, access may instead be provided through national portal solutions or other centralised infrastructure rather than at practice level.
* Data for Italy refer to patients enrolled in outpatient settings for specialist visits in selected regions. Saudi Arabia and the United States excluded from the analysis.
Source: OECD PaRIS 2024 Database.
While electronic medical records have become widely adopted across participating countries, with 13 of 17 OECD countries reporting that 95% or more of patients receive care in practices using electronic medical records, a significant gap exists between system capacity and patient access. On average, 93% of primary care practices report having medical records available at consultation, indicating the technical infrastructure is in place. However, only 18% of PaRIS patients are aware their primary care practice offers online access to health records (Figure 1). In Switzerland, for example, only 2.2% of PaRIS patients reported being aware they could access their medical records online (Box 2).
Switzerland represents a distinctive case in the PaRIS data, characterised by exceptionally low patient awareness of access to medical records despite the widespread use of electronic clinical systems by healthcare providers.
This apparent paradox is largely explained by the institutional design of the Swiss system. Primary care practices routinely use electronic health records (EHRs) for clinical documentation and care management. However, these provider-based systems are distinct from the national Electronic Patient Record (EPR). The Swiss EPR is a patient-controlled platform: patients are the legal owners of their record and must actively open and manage it. Healthcare professionals may only access the EPR with explicit patient authorisation and must manually upload relevant documents. The EPR is therefore not automatically integrated with routine clinical EHR systems used in primary care.
Under these conditions, primary care practices cannot directly offer patients seamless access to their clinical records through their routine EHR systems. Instead, patient access depends on enrolment in and use of the separate EPR infrastructure.
Recent data illustrate the implications of this design. Only approximately 121 332 EPRs have been opened nationwide, corresponding to around 1.4% of the Swiss population (eHealth Suisse, 2025[5]). This extremely low uptake suggests a structural disconnect: while healthcare professionals widely use electronic records for clinical purposes, the patient-accessible EPR operates as a parallel system requiring proactive patient engagement.
In response to these limitations, Switzerland has decided to discontinue the current EPR framework and initiate the development of a new system, the Dossier électronique de santé. The new model aims to strengthen continuity of care by centring on the individual and their health trajectory, consolidating essential medical information across providers, regions, and care settings.
This dual-lens approach exposes a fundamental policy challenge: while healthcare systems may have robust electronic systems in place from a technical standpoint, patients often remain unaware of their access rights or lack practical pathways to use their own health data. The results suggest either that providers are not enabling or communicating patient access features, or that significant barriers exist in translating backend digitalisation into meaningful patient engagement with their own health information.
Patient access to electronic health records is associated with improved healthcare engagement across multiple domains. There are positive effects of empowerment, communication with healthcare professionals, patient satisfaction and health outcomes, and use of healthcare resources. Patients who could access their records felt better prepared for visits, reported more productive communication with clinicians and care partners, and were better able to participate in collaborative discussions about treatment plans. Access to EHRs can strengthen patients’ confidence, agency, and responsibility in managing their care, while also highlighting the importance of addressing usability and comprehension barriers (Alomar et al., 2024[6]).
Providing individuals with clear information regarding the processing of their health data and the access granted to third parties is part of the OECD Recommendation on the implementation of a national health data governance framework (OECD, 2016[4]). Direct access to data empowers patients to verify the accuracy of their medical information, identify potential errors in medications or diagnoses, and maintain continuity of care when transitioning between providers. This transparency enables patients to ask more informed questions during consultations and make well-grounded decisions about their health.
For people living with chronic conditions or receiving care from multiple specialists, access to medical records can be especially important. It allows patients to share their health information more easily across care settings, which can support better co‑ordination and continuity of care. From the perspective of the health system, patient access to medical records may also reduce administrative burden and improve efficiency. Despite these potential benefits, the PaRIS survey shows that patient awareness of online access to medical records remains unexpectedly low across participating countries, even as these digital tools become more widely available. Although many countries are expanding access to electronic health records, availability is still uneven: some provide broad access and data portability, whereas others restrict patients to viewing records from specific providers only (Slawomirski et al., 2023[7]).
Multiple barriers impede the effective implementation of patient access. Clinicians express concerns that patients will misunderstand medical information or worry unnecessarily (Cijvat, Cornet and Hägglund, 2021[8]). Technical obstacles also remain substantial. Limited interoperability, complicated registration processes, and unmet accessibility requirements can all prevent patients from accessing their electronic health records effectively (McMillan et al., 2021[9]). For instance, Sweden and the Netherlands have dealt with resistance from healthcare professionals and barriers such as limited information available to the public due to technical limitations of Electronic Health Records (EHRs) (Cijvat, Cornet and Hägglund, 2021[8]).
The PaRIS patient survey focussed specifically on access to health records through primary care practices. This may underestimate the availability of patient access in some countries, particularly where national personal health record systems are already in place, such as in France and Australia.
Australia’s My Health Record provides a useful example of how national digital infrastructure can support person-centred access to health information. The system offers a secure, consumer-controlled digital record that can be accessed by patients and authorised healthcare providers, including in emergency situations. Patients can view key information such as medications, test results, immunisations, and discharge summaries, and they can also apply privacy controls. In this way, national record systems can strengthen transparency, support shared decision making, and expand access to health information beyond traditional clinical settings.
The accessibility gap documented in the PaRIS survey triggers a cascade of consequences that extend far beyond mere inconvenience. When patients lack access to their own health records or there is inability to share relevant information between different healthcare professionals, they must repeatedly provide identical information across different providers. This redundancy persists despite comprehensive EHR that should, in theory, make such repetition unnecessary. Each time patients recount their medical history, current medications, and allergies to a provider who lacks access to their existing records, three fundamental patient reported experience measures (PREMs) are undermined: trust in the healthcare system, person-centredness, and the patient’s experienced quality of care. The methods used to measure these indicators are described in Table 1.
Source: OECD (2025[3]), Does Healthcare Deliver?: Results from the Patient-Reported Indicator Surveys (PaRIS), https://doi.org/10.1787/c8af05a5-en.
To evaluate the association between information continuity and patient experience, comparative estimates were generated contrasting outcomes for patients who reported having to repeat information that should have been available in their health records with those who did not. The need to repeat information is used here as a proxy indicator of deficits in information continuity (Agarwal and Crooks, 2008[10]). Figure 2 indicates that the proportion of patients reporting a positive experienced quality of care was, on average, 15 p.p. lower among patients who had to repeat information.
Among patients with chronic conditions, person-centred care outcomes were similarly affected. As shown in Figure 3, the share of patients reporting positive person-centred care was approximately 20 p.p. lower for those who had to repeat information. Trust in the health system followed a comparable pattern: Figure 4 shows that the proportion of patients reporting high levels of trust decreased by roughly 15 p.p. when information repetition was required. The erosion of trust is even more acute among patients with chronic conditions who experienced a 30% decline in trust levels when required to repeat information (OECD, 2025[3]).
Across all countries analysed, no improvement in patient experience was observed when patients were required to repeat information. These graphical comparisons consistently demonstrate a substantial association between information discontinuity and poorer patient-reported outcomes, highlighting the critical role of accessible, co‑ordinated health information in supporting quality of care and sustaining patient trust.
Beyond the impact on patient experience, information repetition imposes tangible costs on the system and patients. Low interoperability may increase the failures in care co‑ordination which leads to duplicating testing or patient harm due to delays in timely care (Dix et al., 2025[11]). In the United States, one study showed that when hospitals switch to using the same EHR vendor (as a proxy for higher interoperability), charges, diagnostic tests and hospital readmissions for shared and transferred patients decrease. For instance, referrals see a 3% drop in testing at the receiver hospital and an 11% decline in 60‑day readmissions (Dix et al., 2025[11]).
Share of patients reporting positive experienced quality of care, by whether they needed to repeat information that should have been in their healthcare records
* Data for Italy refer to patients enrolled in outpatient settings for specialist visits in selected regions. ** United States sample only includes people aged 65 years or older.
Source: OECD PaRIS 2024 Database.
Share of patients reporting person-centred care given the need to repeat information that should have been in the healthcare records
Note: Person Centredness measured only for patients with chronic conditions.
The person-centred care measure includes an item on not needing to repeat information. This may strengthen the observed association between the need to repeat information and person-centred care.
* Data for Italy refer to patients enrolled in outpatient settings for specialist visits in selected regions. ** United States sample only includes people aged 65 years or older.
Source: OECD PaRIS 2024 Database.
Trust reported by patients given the need to repeat information that should have been in the healthcare records
* Data for Italy refer to patients enrolled in outpatient settings for specialist visits in selected regions. ** United States sample only includes people aged 65 years or older.
Source: OECD PaRIS 2024 Database.
The challenge of information repetition and fragmented health co‑ordination encompasses a fundamental technical limitation: the lack of interoperability between healthcare systems. Interoperability, by definition, is the ability of different health systems, devices, applications, or organisations to securely exchange, interpret, and use data in a co‑ordinated and meaningful way, with minimal human intervention (National Library of Medicine, 2025[12]; iEHR.eu, 2025[13]; The European Medical Device Regulation, 2017[14]) Even when patients know they can access their medical records, and providers maintain comprehensive electronic documentation, the inability of different healthcare systems to communicate with one another forces patients to become manual data carriers between disconnected siloes of information.
For care co‑ordination, a lack of interoperability creates gaps in clinical information while it could help mitigate the risk of adverse medical errors. A patient discharged from a hospital with new medications may arrive at their primary care physician’s office for a follow-up, only to find that the discharge summary has not been transmitted electronically, and the primary care record contains no information about the hospitalisation. The patient must reconstruct events from memory, potentially omitting critical details. Furthermore, the direct financial burden of misdiagnosis, underdiagnosis and overdiagnosis combined is estimated to be 17.5% of total healthcare expenditure, or 1.8% of GDP in a typical OECD country where one tenth of GDP is spent on healthcare (OECD, 2024[15]).
A comprehensive data profile enables patients to receive personalised health advice and treatments (Khatiwada et al., 2024[16]). This can only be achieved by promoting interoperable healthcare systems who are not only focussed on facilities but also in engaging the patient. Achieving true interoperability requires technical standardisation of data formats, semantic consistency in how clinical concepts are coded and described, governance structures for secure data sharing, and policy frameworks that incentivise or mandate information exchange across organisational boundaries. It also requires addressing legitimate concerns about patient privacy, data security, and appropriate use of sensitive health information. Yet, the alternative, continuing to depend on patients to serve as verbal intermediaries between disconnected electronic systems, represents an unacceptable failure to realise the fundamental promise of health information technology.
PaRIS data opens an immense opportunity to understanding the impact of widespread interoperability efforts such as the European Health Data Space (EHDS). The EHDS proposes reducing information asymmetries between providers and users and promoting greater transparency in the managing of information (Marcus et al., 2022[17]).
As these initiatives mature, PaRIS becomes an essential instrument for measuring whether patients increasingly recognise themselves as the right owners to their health data. Effective interoperability frameworks should be reflected in survey results through heightened patient awareness, greater data literacy, and a fundamental shift in how individuals perceive their relationship with their own health information. Recognising the critical importance of this transition, the OECD will publish a comprehensive report in 2026 examining interoperability challenges and solutions across member countries. This analysis will provide deeper insight into how health systems can overcome technical and organisational barriers to achieve seamless information exchange, transforming the current fragmented landscape into an integrated ecosystem where data flows securely and efficiently in service of better patient outcomes.
PaRIS highlights that significant progress is still needed in the digital transformation of health systems. The OECD Council Recommendation on Health Data Governance provides helpful guidance. By prioritising health data interoperability, building comprehensive and secure patient records, ensuring patient access to their data, and actively engaging both the public and providers in its use, health systems can enhance care effectiveness, improve service efficiency, and strengthen public trust. With focussed efforts, digital tools can be leveraged not merely for data management, but to deliver truly person-centred care, empowering patients and achieving better health outcomes.
References
[10] Agarwal, G. and V. Crooks (2008), “The nature of informational continuity of care in general practice”, British Journal of General Practice, Vol. 58/556, pp. e17-e24, https://doi.org/10.3399/bjgp08X342624.
[6] Alomar, D. et al. (2024), “The Impact of Patient Access to Electronic Health Records on Health Care Engagement: Systematic Review”, Journal of Medical Internet Research, Vol. 26/1, p. e56473, https://doi.org/10.2196/56473.
[8] Cijvat, C., R. Cornet and M. Hägglund (2021), “Factors Influencing Development and Implementation of Patients’ Access to Electronic Health Records-A Comparative Study of Sweden and the Netherlands”, Frontiers in public health, Vol. 9, https://doi.org/10.3389/FPUBH.2021.621210.
[11] Dix, R. et al. (2025), “Costs of Technological Frictions: Evidence from EHR (Non-)Interoperability”.
[5] eHealth Suisse (2025), State of play of the EPR in Switzerland, https://www.e-health-suisse.ch/fr/coordination/le-dossier-electronique-du-patient/etat-des-lieux (accessed on 3 October 2025).
[1] Granström, E. et al. (2020), “Digital tools as promoters for person-centered care practices in chronic care? Healthcare professionals’ experiences from rheumatology care”, BMC Health Services Research 2020 20:1, Vol. 20/1, pp. 1108-, https://doi.org/10.1186/S12913-020-05945-5.
[13] iEHR.eu (2025), Interoperability in healthcare, http://iehr.eu/knowledge/interoperability-in-healthcare/ (accessed on 8 July 2025).
[16] Khatiwada, P. et al. (2024), “Patient-Generated Health Data (PGHD): Understanding, Requirements, Challenges, and Existing Techniques for Data Security and Privacy”, Journal of personalized medicine, Vol. 14/3, https://doi.org/10.3390/JPM14030282.
[17] Marcus, J. et al. (2022), “The European Health Data Space”, SSRN Electronic Journal, https://doi.org/10.2139/SSRN.4300393.
[9] McMillan, B. et al. (2021), “A qualitative exploration of patients’ experiences, needs and expectations regarding online access to their primary care record”, BMJ open, Vol. 11/3, https://doi.org/10.1136/BMJOPEN-2020-044221.
[12] National Library of Medicine (2025), Health Data Standards and Terminologies: A Tutorial, https://www.nlm.nih.gov/oet/ed/healthdatastandards/01-300.html (accessed on 8 July 2025).
[3] OECD (2025), Does Healthcare Deliver?: Results from the Patient-Reported Indicator Surveys (PaRIS), OECD Publishing, Paris, https://doi.org/10.1787/c8af05a5-en.
[15] OECD (2024), The economics of diagnostic safety: Setting the scene, OECD Publishing, Paris, https://doi.org/10.1787/bb24ea76-en.
[4] OECD (2016), Recommendation of the Council on Health Data Governance, https://legalinstruments.oecd.org/en/instruments/OECD-LEGAL-0433.
[7] Slawomirski, L. et al. (2023), “Progress on implementing and using electronic health record systems: Developments in OECD countries as of 2021”, OECD Health Working Papers, No. 160, OECD Publishing, Paris, https://doi.org/10.1787/4f4ce846-en.
[14] The European Medical Device Regulation (2017), “REGULATION (EU) 2017/ 745 OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL - of 5 April 2017 - on medical devices, amending Directive 2001/ 83/ EC, Regulation (EC) No 178/ 2002 and Regulation (EC) No 1223/ 2009 and repealing Council Directives 90/ 385/ EEC and 93/ 42/ EEC”, https://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:32017R0745 (accessed on 8 July 2025).
[2] Tzimourta, K. (2025), “Human-Centered Design and Development in Digital Health: Approaches, Challenges, and Emerging Trends”, Cureus, Vol. 17/6, p. e85897, https://doi.org/10.7759/CUREUS.85897.
Contact
Isaura GUTIÉRREZ VARGAS, isaura.gutierrez.vargas@oecd.org.
Eric SUTHERLAND, eric.sutherland@oecd.org.