With a Single Patient Record across all of health and social care in England on the horizon, Policy and Engagement Manager Emma Lagerstedt explores what we can learn from other countries’ experiences of developing national electronic health records, based on conversations with international experts.
Introduction
More than two decades after the first attempt to develop a national electronic health record (EHR) in England, it might finally be within reach. Announced by the Health Secretary in October last year and expanded on in the Government’s 10 Year Health Plan, the plan to create a Single Patient Record (SPR) follows years of gradual progress – from summary care records to shared care records – all aiming to connect England’s patchwork of electronic patient records managed by individual healthcare providers.
Though these efforts have helped patient records “talk” to each other, silos remain, with patients still having to repeat their story when moving between different health and care services.
A single patient record, shared across all health and social care services, available to those involved in someone’s care and accessible through the NHS App, has the potential to improve care coordination, save staff time and give people more ownership over their health information. To understand what might help or hinder this ambition, we spoke to experts in other countries about how their EHRs have been designed, delivered and used.
This piece does not aim to provide a comprehensive overview or a direct comparison between features in different countries – several reports already provide this detail across the OECD (a group of 38 highly developed nations including the UK) and European Union. Instead, it highlights qualitative insights and reflections on themes of particular relevance to the development of England’s SPR: technical infrastructure; patient access and control; and implementation and engagement. It also considers areas where other countries might look to England to lead internationally: providing timely and secure access to SPR data for research, and public engagement and communications around health data.
We have undertaken interviews with stakeholders in a range of countries: Belgium, Denmark, Estonia, Greece, Singapore, Spain, and Sweden. These countries were selected to reflect a range of governance structures, system maturity, and delivery models – from national systems to federated and regional approaches.
Technical infrastructure
The healthcare IT landscape in England is often described as fragmented and complex. Many countries we spoke to had similar histories: a mix of providers who all manage their own suppliers and systems and have digitised at different paces over the course of decades, with national platforms bolted on later to try and connect the dots.
Much like in England, EHR systems across the world have in many cases grown organically from the “bottom-up”, instead of having a cohesive system, intentionally designed to work across every provider. This can be difficult given the number of actors involved – the average number of patient record vendors available to physicians in OECD countries is 16. In these systems, differences in data quality, standards and structure make interoperability costly and slow and lead to data not being shared effectively. These systems are rarely re-designed. Instead, workarounds are layered onto existing systems, adding complexity.
Countries with fewer legacy systems have had an easier time implementing a national record. In Greece, a new national electronic health record was recently developed and implemented in 12 months. This was helped by a willingness to start from scratch – as there were previously few digitised records and none at a national level - and try something new. Likewise, e-prescriptions are mature in almost all countries we spoke to, which demonstrates how it is often easier to successfully implement a “top-down” programme (particularly when it is relatively smaller in scope) than make changes to an entire electronic record system that has grown organically over time.
In more federated systems, or in countries where regions are particularly “strong”, regional variation can be significant. Some regions in Spain have had sole responsibility for their healthcare systems since the 1980s, whereas others have had these responsibilities since 2002. As a result, health data infrastructure in regions where healthcare was devolved earlier is often more advanced, such as Catalonia, Galicia and the Basque country which have all implemented regional EHRs covering hundreds of providers for the entire population. Similarly, in Belgium, where responsibilities for data sit with regions and providers, patient data from Flanders is generally more comprehensive, accurate and timely than Wallonia. These differences mirror some of the challenges in England. Our research into Integrated Care Systems (ICSs) showed a great deal of variation in data maturity, as some ICSs had large analytical datasets integrated across providers and others reported having no sustained linked dataset and limited integration of primary care data.
Despite this, some countries have built bridges across these regional divides. Spain’s national patient record allows providers across the country to access data from other regions through a Ministry of Health connection. In Denmark, a national platform is integrated into each provider’s EPR system, allowing clinicians to access specific data from other providers on a use case basis (rather than the entire record).
Patient access, control and empowerment
A key feature of England’s SPR is that patients will be able to view their own record in the NHS App. Our research has shown that four in five people think that this is important and national engagement led by NHS England showed strong public support for this feature. Experts from countries where patients can easily access their own data say that the ability to see their treatment plans, notes and results helps foster a sense of transparency and patient involvement that builds trust.
Despite a clear desire from patients to view their own data, access is still limited in England. Efforts to compel GPs to make GP records available to all patients in the NHS App were resisted by the BMA on the basis that patients may see information or results without adequate explanation from a clinician or see confidential information about a third party. Currently, a majority of people can see (at least a summary of) their GP records online but cannot see GP data from before October 2023, nor data from other providers.
Other countries’ EHR systems have prioritised giving patients access. Patients in all EU countries and 9/10 OECD countries have some access to their data, and systems in the countries we spoke to provide some level of access. However, where decisions around providing access and developing platforms rely on individual providers, access is often patchy, with only a minority of OECD countries reporting that access is universal. For instance, in Belgium, the mynexuzhealth app is seen as an example of best practice - but it is only available to patients treated by University Hospitals Leuven. In Spain, most regions have an app or platform available for people to view their record, but there are clear differences in how advanced these platforms are, with some regions like Catalonia leading in terms of richness of data and functionality in their La Meva Salut (MyHealth) app.
Even when patient access to records is nationally coordinated, there are difficult questions: what should be visible? When? To whom? As the BMA noted, there is a risk that patients seeing information from their record without proper context can cause fear. One expert we spoke to pointed out that sometimes, a test or diagnostic result can be “abnormal” but perfectly fine in the context of the patient’s personal circumstances or illness, and that making results available without a consultation can cause alarm. Another view is that empowerment means giving patients full access to the information about themselves and educating them to understand their health better, rather than taking a paternalistic approach and making assumptions about what information patients can be trusted with. Some countries offer choice. In Sweden, patients can choose to see new entries in their record immediately or delay them by 14 days to allow time for a discussion with healthcare professionals first.
In addition to being able to view one’s own record, some countries allow patients to restrict information from view, choose who can access it, or edit information in the record. Australia and a majority of EU countries allow patients to choose who can access information in their record. A smaller minority of countries require patients to affirmatively consent to sharing EHR data across providers, such as Luxembourg which has an access matrix defining rights for each type of data and organisation.
In Demark and Australia (among others) patients can restrict parts of their record deemed sensitive. In Denmark, this can be overridden by clinicians in emergencies (like when the patient is unconscious) but they must record a reason for doing so, which could address potential concerns about patient safety. Australia goes further, giving patients the ability to permanently delete a document from their record.
Research by Healthwatch England has shown that nearly one in four adults have noticed inaccuracies or missing details in their medical records. The ability to correct one’s records could help mitigate negative impacts of incorrect records on quality of care, and a majority of EU countries allow patients to correct or request corrections to their record. Unrestricted ability to change one’s own medical records might mean patients could remove pertinent details or add inaccurate information, compromising on record quality. Most European countries don’t allow patients to directly alter their own records, but allowing patients to request a correction might be a happy medium, such as in Spain where patients can request this via a message in their app.
The Government also plans to allow patients to input data into the SPR via wearables. When inputting information into one’s own record, international experts emphasised the need for clear expectations – patients should understand whether this data is being monitored and used, so nothing gets missed. Whilst this information might be useful, patients must be clear on whether their healthcare provider is going to look at it if it is not brought up in consultation.
Some of this functionality – such as the ability to input data from wearables like Fitbit and give access to specific parts or the entire record – are available to patients in England via third party apps like Patients Know Best, which are in some places integrated into the main NHS App, but the development of the SPR in the App provides an opportunity to make such features available to all.
Implementation, engagement and organisational culture
It is sometimes said that “if you build it, they will come”, but anyone who has worked on large-scale digital transformation programmes knows that the process of implementing a new system does not end when the technology is developed. On the contrary, the experts we spoke to stressed that implementation and onboarding was the hardest part of the process and emphasised the importance of cultural and organisational factors in creating success.
User experience is a key success factor for new EHR systems, as usability issues often mean the advantages of an EHR are not fully realised. As stressed by the experts we spoke to, a system is only effective if it works for the people using it, which means prioritising user-centred design and ensuring systems are intuitive and reliable. In Estonia, the system is based around discrete documents being uploaded to the EHR, meaning the information someone is looking for is not always easily findable (for instance, the data is sorted by upload date, not the date of the result or consultation and clinicians do not always upload data in a timely manner). In Spain, not all GPs have the digital certificate required to access the national record, creating barriers to accessing data. Having an EHR that is useful to clinicians is therefore just as much about the user friendliness of the system as it is about the data that is available.
Managing change and securing buy-in across the health service was also seen as a key condition for success in rolling out a new EHR system. As one stakeholder put it, “building the technology is easy, but changing people’s mindset and establishing common goals and motivations is the hard part.” Successful implementations are characterised by early engagement across the sector – patients, clinicians, health service leaders and suppliers – to agree what good looks like and build consensus before developing the technological solution. In Catalonia, as part of the development of a new EHR system, the Catalan government conducted a large-scale engagement process of 3,400 people to co-create a collective vision for a new healthcare model and determine how data and technology should support this.
Clear accountability and incentives help too. Many of the most advanced systems use financial incentives and/or penalties to encourage adoption of standards. In Catalonia, providers are set requirements for IT maturity and interoperability and face financial penalties if these are not met. National vision and strong leadership were also seen as vital to maintain focus and keep programme delivery on track. This is particularly relevant in England given the shrinking centre of health policy making and abolishment of NHS England as the body responsible for health data leading to reduced capacity for policymaking.
Time to think differently
Most countries, including England, have pursued a nationally coordinated system via interoperability: linking existing records by agreeing a set of rules and standards for how information should be structured in systems and exchanging data between them. This model is common, particularly where there were already existing records in place at the provider-level at the time national structures were put in place. However, this way of working is centred on existing EPR applications rather than the data itself and can entrench vendor lock in and limit innovation. In addition, as different providers have different levels of data maturity, this approach can have the effect of setting the standards for interoperability to the lowest common denominator among the EPRs being linked, reducing overall maturity across the system.
Some countries have raised the possibility of re-thinking this approach and are shifting to open, vendor neutral platforms using global standards. Catalonia and Greece for example, are separating data from applications and are moving towards open EHRs built on vendor-neutral platforms, allowing flexibility in choosing suppliers and integrating new technologies without being restricted by legacy systems. Other approaches to bringing data together that have been proposed include the We Are initiative in Belgium which provides a data platform allowing patients to manage their data in a Personal Information Management System and granting access on a case-by-case basis, and peer to peer health records.
Whatever direction England takes, this is a moment to think differently – not just about connecting today’s systems, but about what the future of health and care should look like.
Opportunities to lead
It is easy to assume that other countries are performing better in all areas, and to overlook strengths close to home. Estonia is often hailed as an international front-runner in EHRs and is undoubtedly further along than England is. Despite this, one of the first things the Estonian expert told us was that “the Estonian system isn’t perfect”. Indeed, no country does everything perfectly, and there are areas where England is well-placed to lead the way internationally.
One clear example is the use of EHR data for research and other secondary purposes. England has invested significantly in recent years in making data available for research by facilitating faster access to curated datasets (through initiatives like the Health Data Research Gateway) in a secure way (through the development of the Secure Data Environment service). The forthcoming Health Data Research Service (HDRS) is set to make patient data available at speed and at scale by making data from every provider available to approved researchers by default via the SPR, presenting a unique advantage, particularly for clinical trials which few countries use EHR data to facilitate.
Other countries we spoke to often have national registries or databases to some extent, but siloed data often makes using data for secondary purposes difficult and timeliness of data for secondary purposes remains a challenge internationally. Researchers often have to apply to each individual data controller (such as a hospital) separately for access to data, slowing down the pace of research. As an example, in Belgium, securing data for one research project might involve submitting requests to a combination of health insurers, the reimbursement agency, public health agency and individual hospitals.
The European Health Data Space (EHDS) – an EU regulation on the use and exchange of health data – entered into force earlier this year. The EHDS will require European countries to implement several policies and structures already in place in the England, and colleagues across the channel may look to England for examples of best practice ahead of implementation. This is further helped by the ability of England and the UK to move more quickly than the EU due to the number of countries that need to coordinate progress. For example, member countries are developing their own national metadata catalogues for health data, already available in England via the Health Data Gateway. EHDS also gives individuals the right to opt out from the use of their identifiable health data for secondary uses, meaning some countries that have previously not had an opt out system in place may look to England for an example of how the Type 1 and National Data Opt Outs have worked in practice to date.
As EU member states prepare to make large-scale changes to how health data is managed and shared, communication and engagement with the public will be key to maintain public trust. Our conversations with experts made clear that levels of trust in governments’ management of data and expectations around engagement varied between countries and are culturally informed. An expert in Singapore attributed the country’s ability to re-use data for public health purposes to the “amazingly high level of trust” in government departments and attributed this partly to cultural factors such as collectivism. In other countries such as the Nordics, experts felt that most members of the public are used to a digital-first society and therefore take EHRs and digital health as a given. In many countries, engagement and communication around health data has mainly focused on individual programmes or applications (e.g. public engagement specifically about genomic data or a communications campaign about a new app to access patient records) and some noted that the UK is relatively advanced in this area (possibly due to the chequered past of previous data initiatives). Initiatives like the Department of Health and Social Care’s National Engagement on Data may be a model for European countries as they seek buy-in for new uses of data.
Where next?
The SPR presents an opportunity to improve care, make clinicians’ lives easier and empower patients, but success hinges on implementation, and there are several key lessons that can be learned from abroad.
When asked for one key piece of advice ahead of the rollout of the SPR in England, several experts said the same thing: decide what you want the SPR to achieve before deciding on the technology. Particularly in the context of rapidly changing models of healthcare delivery (set out in the English context in the Government’s 10 Year Health Plan), there is an increasing need to think about an SPR as supporting the model of care, rather than something to be pursued for its own sake. In order to be successful, the Government must decide – in agreement with clinicians, patients and other stakeholders – what the development of the SPR is to achieve and set out clearly how it will support the shifts the Government wants to see in healthcare.
These decisions should involve early engagement to secure buy-in and ensure the finished product addresses the pain points experienced by clinicians and patients in real life. Strong leadership and change management will be key to maintain a steady course despite the distractions of day-to-day management of the NHS, overcome existing ways of working, and establish common goals.
Once it is clear what goal the SPR is in service of and how it will support the NHS (not the other way around), the final piece of the puzzle will be to communicate the changes clearly to members of the public to help people understand what is changing, why, and what it means for them.