Paul De Raeve and Smart4Health Co-ordinator Ricardo Jardim-Gonçalves highlight the growing need for Digitalising the healthcare ecosystem with EU-wide electronic healthcare records.
There is increasing interest across EU institutions, national governments, healthcare industries and stakeholders to digitalise the healthcare ecosystem, mainly aiming at deploying more cost effective healthcare provisions, reducing the frontline nursing workload, easing lifelong learning activities for healthcare professionals, facilitating cross-border care, and fully developing EU Electronic Healthcare Records (EHR).
To develop sustainable healthcare ecosystems, co-creation and co-design with the end user becomes essential. Due to the current lack of end user co-creation, there is a lot of patchwork, too many digital health apps and tools, leading to a kind of ‘blockage’ for the end user. Many tools are not systematically supportive of the healthcare ecosystem or its frontline workforce. However, if there is one product for the digitalisation of healthcare that is key for frontline, it is the EU Electronic Health Record (EHR). Patients and citizens are increasingly demanding the possibility of having their complete health history accessible via smartphone or any other digital device, to be able to share it with their nurse and other healthcare professionals at different facilities and across borders.
The state of play of EHR in the EU
At the time of writing, there is not a single common EHR system operating across all EU Member States. Instead, some countries have it and some do not; and those which do often have different EHRs implemented at regional and municipal levels.
An example of a country which has successfully implemented EHR in its national systems is Finland. The coverage of EHR across the country is 100% in healthcare facilities in both the public and private sectors. Functionalities are implemented continuously in Finnish EHR systems, as well as e-services for citizens and patients. The digitalisation of healthcare in Finland is now an obligatory municipal strategy, with the whole country moving towards an integrated ‘e-Government’. This is motivated by the expectation that it will reduce the administrative burden and improve patients’ satisfaction. Finnish authorities aim to provide equal health services across the whole of Finland. The Finnish municipalities which previously used different health management systems that did not ‘speak’ to each other have been all integrated and now have a centralised data archive for citizen’s health records and data. Close to Finland is Estonia, whose online portal ‘Digilugu, operating at the national level, enables citizens to see their health records and determine who can view their data.
In contrast, Germany does not have a nationally operated EHR system in place, due to the resistance of physicians, who are mainly concerned about data protection issues. There are EHR systems in some German federal states, but with limited data. In the case of Belgium, a country marked by its linguistic complexity, different regions have developed different EHR systems which do not communicate across regions. A similar situation is Denmark, which developed several EHR systems operating at the national level, to meet differing regional needs. Across 98 municipalities, about four different systems of EHR are used: two regions use the EPIC system while the other three regions use the systematic system. The 98 municipalities are using three different systems: KMD, CSC and Systematic. In other countries, such as France, the system for EHR is developed at the national level as the Dossier Medical Partage (DMP). As of 2019, four million citizens are in the DMP system, which stores and secures the patient’s health data and allows authorised healthcare professionals to share this information, with the patient’s consent and under her or his control. Patients can create their personalised DMP online, and healthcare professionals can also do so on their behalf if the citizen allows. Italy has an operating Electronic Health Dossier, the Fascicolo Sanitario Elettronico, containing the citizen’s entire health record. It allows for traceability, consultation and sharing of health data with healthcare professionals. In Portugal, all primary health care providers use electronic health records and most hospitals use electronic health records, with some interoperability between different software.
Croatia has the national Central Healthcare Information (CEZIH) system, providing IT services and basic e-health functions including e-orders and e-lists, e-prescriptions, e-records, national preventive programmes, e-infant cafe and the HZZO insurance portal. The inclusion of hospitals in the e-lists and e-ordering started in 2012. The Czech Republic started preparing for the launch of EHR in 2009 with the University Hospital Motol using the IntelliVue Clinical Information Portfolio (ICIP) tool developed by Philips. It became fully functional since 2011 and is mainly deployed in the Department of Anaesthesiology and Intensive Care. Other departments still rely on paper-based health records.
The examples above show one of the biggest challenges facing the prospective adoption of an EU-wide EHR system: different systems communicating with each other. Stakeholders have discussed interoperability and semantics for over 20 years now, but the healthcare competition environment stops us from using an EU EHR that empowers citizens within an EU people-centred care ecosystem. Instead, the very wide range of EHR platforms and tools leads to oversaturation of the healthcare ecosystem and developing market solutions which will not be used by the end users, although big industries and SMEs continue to develop apps and platforms with no end user connection.
Research conducted by the Organisation for Economic Co-operation and Development (OECD, Oderkirk, 2017)1 concluded that many countries are investing in the development of EHR, but that only a few of those are studying the possibility of data extraction for research, statistics and other uses serving the public interest.
End user co-creation and co-ownership
In the digitalised healthcare system, the end users are the healthcare providers, with the nurses representing the largest health professional group. Co-creation, also referred to as co-design, is what happens when the developers of an innovative product engage with the expected end users of that innovation during all the phases of the design process. This translates into end users being asked in a systematic way, at the very beginning of the development phase, what their needs are within different EU contextual situations; and then being engaged throughout each stage of development, leading to fit-for-purpose solutions.
With the EHR, co-creation implies that IT developers need to engage with the nurses from the very beginning, asking them what their needs are regarding data transfer and visibility and what tools nurses need for better outcomes while lowering down their workload. If the end user and the developer define workload and health outcomes together, the tools can answer unmet needs.
IT developers and end users should engage in the co-creation process, which would ideally include all the steps needed in developing the EHR system, giving each other input and learning from each other, moving away from the silo thinking. When the EHR is deployed, the engagement of end users will ensure that full deployment and impact are achieved. Co-creation implies that end users have been involved in developing ideas and concepts for the EHR, that they are actively engaging with the different stakeholders on an equal basis, facilitated by a trusted third party, identifying shared value on which the EU EHR is built.
Nurses can provide substantial contribution to any innovation within the healthcare ecosystem, as their pragmatic views and expertise leads to fit-for-purpose IT solutions.
Equally important for co-creation is communication. Dissemination, communication and exploitation plans are essential components to reach success outcomes. Having a common idea and understanding of what the exploitation can be, is key when designing EHRs. Increasing dissemination efforts, at the start of the co-creation, are needed to effectively communicate evidence emerging from the implementation of the co-designed solutions. This level of dissemination will determine the trustworthiness in the digital healthcare ecosystems in the EU.
Building that trust is a key element, with nurses having a unique and privileged position of having direct access to daily care needs and an in-depth knowledge of patients’ experiences. Building trust at EU level relates to the end user exchanging views with MEPs, the European Commission, industry and SMEs, on the policies and steps to be undertaken to co-design the EHRs. The European Commission’s paper on ‘Digital transformation of healthcare’ focuses on how to give EU citizens better access to their health data in the EU by using digital services which empower them; and as such, install person-centred care, fostering the use of shareable health data for research, enabling better diagnosis and better health outcomes.
EU EHR H2020 Project Smart4Health and InteropEHRate: towards a citizen-centred healthcare ecosystem in the European Union
The European Commission’s 2017 mid-term review of the Digital Single Market2 lists three priorities:
- Citizens’ secure access to electronic health records and the possibility to share it across borders and the use of e-prescriptions;
- Supporting data infrastructure, to advance research, disease prevention and personalised health and care in key areas including rare, infectious and complex diseases; and
- Facilitating feedback and interaction between patients and healthcare providers, to support prevention and citizen empowerment as well as quality and patient-centred care, focusing on chronic diseases and on a better understanding of the outcomes of healthcare systems.
A 2015 report3 by PwC estimates that digital health could save the EU €99bn in healthcare costs. The same report indicates that digital health could enable 11.2 million people with chronic conditions and 6.9 million people at risk of developing chronic conditions to extend their professional lives and improve productivity. This would add a further €93bn to the EU’s GDP.
Smart4Health addresses these priorities and responds to the European Union Digital Transformation in Health and Care with an outstanding team of European researchers to develop, test and validate a platform prototype for the Smart4Health citizen-centred health record. Using the 4HealthPlatform, citizens will be empowered with electronic healthcare record exchange, personal connected health services, and the ability of data donorship to the scientific community.
Smart4Health enables citizens to manage their own health data throughout the EU and beyond, advancing own and societal health and wellbeing, enabled by a citizen-centred EU EHR exchange by dynamic extendable mapping. This will pave the way for the full deployment of citizen-centred solutions and services in a digital single market. It will provide for interoperability and co-existence with profiles that are currently used e.g. by Member States, regions. Smart4Health will enable the integration of citizen-generated health data and connect to science and innovation.
Activities surrounding the Smart4Health platform will enable citizens to manage, collect, access and share own health and healthcare data. Smart4Health provides an easy-to-use, secure, constantly accessible and portable health data and services prototype within the EU and beyond, thus advancing citizen health and wellbeing, nurturing digital health innovation by enhancing interoperability and bridging the gap between political intent and capability for action by the citizen:
- Citizens managing and generating their own health data in the EU and beyond, with data in actionable formats providing for smart processing and analysis;
- Digital health and acre with validated open source interoperability assets and new tools; and
- Secure, seamless communication of health-related data through clarity and oversight.
The platform development will significantly go beyond the current state of development by providing:
- Citizen-centred health platform using/compliant with EU legislation electronic ID, GDPR on data access and portability;
- Citizens’ secure access to own health data and sharing, eDelivery and cybersecurity package;
- Citizens’ empowerment to provide feedback, to co-operate and interact with healthcare providers; and
- Citizens’ empowerment to provide/donate data for societal benefit and use by the scientific community connected to the European science infrastructure, while complying with EU and national legislation and requirements.
Smart4Health will advance the current state of development and implementation especially on three key issues:
- Introducing a European EHR exchange platform based on dynamic extendable mapping and ‘bridging’ between existing manifold different EHR and PHR systems, while dynamically including progress on harmonisation and standardisation;
- Using actionable data and comprising clinical and citizen-generated data, in all life situations: at home, at work, travelling; and
- Operating a citizen-centred programme on a zero-knowledge base involving the citizen in the co-design.
Smart4Health will empower citizens and caregivers to manage their health and to collaborate with medical doctors and researchers via shared decision-making that considers citizens’ preferences. Medical doctors and researchers can gain a better understanding of the patient’s health over time and reduce office visits and hospital readmissions, resulting in better patient outcomes and experience. With Smart4Health citizens will become more engaged and knowledgeable partners in their own health, care and research. Citizens will be active participants in the data collection process, observe how their health may fluctuate over time, and understand how certain actions and behaviours may influence their health outcomes. Smart4Health will contribute to reduce the time, effort, and costs of visiting a medical doctor and optimise the value of these encounters.
Smart4Health impacts on nurses and doctors, supporting clinical care delivery by enabling medical doctors and care teams to make timelier, better-informed decisions and to create personalised treatment plans. It will enable healthcare professionals to obtain insight into their patients’ health in real life settings. On health and healthcare research, Smart4Health will enable researchers to expand their studies by incorporating digital tools that embed CHGD into their study design and protocols, such as mobile health devices, online discussion boards, and health-data sharing platforms.
As a key end user, EFN is engaged in a second EU EHR project, InteropEHRate, selected from the same H2020 call, from which only 2 EU projects on EHR were selected. The InteropEHRate project aims to provide European citizens with a complete view of their health history, shareable with health operators and researchers, by means of a multi-alternatives strategy based on:
- The adoption of personal EHRs;
- The incremental integration of existing EHRs;
- The support of different levels of interoperability;
- The usage of blockchain and a decentralised architecture; and
- The human aspects of governance.
In doing so, it has developed three use case scenarios: a face-to-face scenario, in which the patient shares her/his health data with the healthcare provider; an emergency scenario in which patient’s health data is retrieved from a cloud by the healthcare providers; and a scenario in which patients donate anonymised health data to health researchers.
The exchange of data as part of EHRs normally happens with the authorisation of the patient but without their control. Moreover, this exchange is organised by a superior authority: namely governments or hospitals. The idea behind this project is to give control back to the citizens and patients. Hence, the InteropEHRate project will release an open specification to securely exchange health data using the InteropEHRate protocols between different EHRs, as well as different applications of researchers and healthcare professionals of different countries.
End users need to co-create with the developers of this format to ensure that it delivers to their needs. Part of the co-creation, in this project, is testing the developed solution but also testing how it impacts the end user organisations. In this context, the EFN and its project partners, aim to support the transformation of healthcare. To foster co-creation, focus groups are not enough: businesses need to understand the added value of end user engagement in co-creating new technologies and then deploy them at the frontline of healthcare.
COVID-19 and EHR
In the context of the ongoing COVID-19 outbreak, a fully deployed EHR system could have greatly alleviated emergency situations and intensive care units. Direct access to patients’ health data could have saved medical professionals significant time and resources in caring and treating COVID-19 patients. Many healthcare systems are under pressure due to shortages of nurses, with many staff leaving the frontline due to becoming sick themselves; a fully operating system of EHR would have been a real support to co-ordinate care. It would have decreased the amount of time expended on routine and first-admission related tasks, enabling them to put all the focus in caring and treating patients in need.
EU countries are facing unprecedented challenges to guarantee sustainable and accessible healthcare solutions for its citizens, that simultaneously protect the frontline healthcare professions. Research and innovation are instrumental to upscale system level developments and engage frontline knowledge, understanding and know-how through life-long learning programmes. This becomes particularly timely due to the COVID-19 outbreak.
If another pandemic or health-related crisis comes, the broader European population would benefit from finally having an EU EHR system. It would alleviate pressure on nurses and other healthcare professionals. Nursing researchers and frontline professionals can successfully integrate innovative EHR solutions into the nursing care process to boost personalised healthcare. We believe that nursing care research could be a strong driver to inform EU policies impacting European citizens by accelerating integrated and person-centred approaches and improving health outcomes.
EHRs are a healthcare innovation greatly demanded by EU citizens and other stakeholders. However, for these to be fully deployed and succeed at the EU level, it is essential that they are interoperable across all EU countries. This is what the InteropEHRate and Smart4Heealth projects are trying to achieve. Both of these projects are doing something that is paving their way to success: engaging with the nursing profession, as end users of these new systems for EHRs, from the very beginning to the outcome’s full deployment EU-wide (which will happen in a few years’ time). This will ensure the take-up of the project’s outcomes by healthcare professionals and citizens.
The projects are working on overcoming one of the major hurdles to adoption of EHR in the EU Member States, which is finding an agreement across developers and end users on the minimum data content of the electronic record. EU projects are tackling the use of different languages for EHRs, addressing the potential difficulties to understand records made by healthcare professionals in contact with patients.
In the context of COVID-19 outbreak, not having a fully deployed system of EHR at the EU level was a missed opportunity. There are many other things that could have be done to have our healthcare systems better prepared, but having an operational EHR is an old demand from the EU citizens that could have greatly alleviated the situation at the frontline for healthcare professionals and patients. In a context in which already existing workforce shortages got even more acute due to the quick spread of the virus among the frontline workforce, fully operating EHRs could have saved a lot of time in routine administrative and first-time-admission-linked tasks.
However, even though this opportunity was missed once, it does not have to be missed the next virus wave. EU institutions can, and should, take the initiative in co-ordinating and actively encouraging Member States to adopt a system of EHR that is interoperable for the benefit of all EU citizens. It is key that all involved stakeholders get to know, and then deploy, the outcome of the Smart4Health and InteropEHRate projects.
2 COM(2017) 228 final
Prof Dr Paul De Raeve, RN, MSc, MStat, PhD
European Federation of Nurses Associations
This article is from issue 13 of Health Europa. Click here to get your free subscription today.