Patients sharing
their health information
across borders
Marianne Voogt
Master thesis
for M.Sc. Medical Informatics
14 December 2018
A scenario analysis for exchanging patient summaries
in unplanned care
Patients sharing their health
information across borders
A scenario analysis for exchanging patient summaries
in unplanned care
December 14th, 2018 Author Marianne Pauline Voogt Student number: 11231297 m.p.voogt@amc.uva.nl voogt@nictiz.nl Tutor Floris Wiesman f.j.wiesman@amc.uva.nl Amsterdam UMC Meibergdreef 3, Amsterdam Mentors Elise Peters Michiel Sprenger peters@nictiz.nl Nictiz Oude Middenweg 55, Den Haag
Table of contents
Summary 6 Nederlandse samenvatting Preface 8 List of abbreviations 9 1 Introduction 10 1.1 European interest in patient mobility 1.2 National responsibility 1.3 The Dutch developments 1.4 Push towards active patients 1.5 Europe too calls for patient engagement 1.6 The only solution for the Netherlands? 2 Interactive back-casting method 15 2.1 Dialectic approach 2.2 Strategic problem orientation 2.3 Future vision development 2.4 Back-casting analysis 2.5 Elaborate future alternative and define follow-up agenda 2.6 Embed results and agenda and stimulate follow-up 3 Theoretical background 21 3.1 What is a Patient Summary? 3.2 What is an Electronic Health Record system? 3.3 What is a Personal Health Environment? 4 Case introduction 31 4.1 Dutch health and IT landscape 4.2 Estonian health and IT landscape 4.3 Theory versus practice 5 Future vision 36 5.1 Roos Dalstra shares her health information 5.2 How would it work?! 5.3 Katrin Aare gives consent to let her doctors share her health information 5.4 How would it work?! 6 Advantages and disadvantages of the Dutch scenario 47 6.1 Advantages 6.2 Disadvantages 7 Facilitating steps forward 50 7.1 Campaign for patient and professional 7.2 Format for the creation of a summary 7.3 Deal with conflicts 7.4 New form of communication 7.5 Extend PHE-ecosystem 8 Reflection on workshop 538.1 Relations between scenario characteristics, advantages and disadvantages 8.2 Additional facilitating factors 8.3 Facilitating factors in ReEIF-perspective 8.4 Ethical considerations: a potential digital health divide? 9 Discussion and conclusion 57 9.1 Strengths and limitations of the study 9.2 Future research 9.3 Recommendations References 61 Appendix 67 Appendix A: List of text boxes Appendix B: Additional material for research methods Appendix C: Additional material for theoretical background Appendix D: Additional material for future scenarios
Summary
The need for accessible health information across borders is recognised through the adoption of a directive on the application of patients’ rights in cross-border healthcare by the European Parliament. This directive has resulted in developments to exchange information between health professionals when a European patient visits a different European country and requires unplanned care. Two use cases are defined: patient summary and ePrescription, for two roles: receive information when the patient is abroad by the country of treatment and to supply information by the country of affiliation. Countries may join the programme for either of the use cases, and per use case for either of the roles, in their own pace, in different phases and with their own responsibility for implementation. The aim of this study was to explore the possibility of creating a patient summary in the Netherlands by using a patient’s personal health environment (PHE). The research question is: To what extent can the European patient summary be realised using a personal health environment? The interactive back-casting method is used to create a scenario for the Dutch future. A future scenario for Estonia is added to be able to compare the Dutch scenario to another European country that will realise the European patient summary using a nation-wide implementation of electronic health record (EHR) systems and to learn from their solution. Nine interviews were conducted in total, that resulted in a first vision of both scenarios. Five health IT experts in patient summaries or PHEs participated in a workshop in which the draft scenarios were analysed and the Dutch scenario was compared to the Estonian scenario. The aim was not to decide which scenario is better, but to describe advantages and disadvantages, after which facilitating factors were described to improve the realisation of the Dutch future scenario. The resulting scenario describes a fictional patient who wants to travel abroad and prepares herself for any unplanned care. First, she updates her health information in her PHE. Second, she creates a summary in her PHE, and third, she sets her PHE’s settings such that she gives access to the National Contact Point eHealth(NCPeH) to see her patient summary. In the second scenario, an Estonian patient is automatically opted in the national health information exchange programme of Estonia. Her doctors are required to send the information that they collect of her to the national information system. The Estonian NCPeH has a connection to this central repository and can generate a summary of these information elements automatically. The advantages of the Dutch scenario compared to the Estonian scenario are: direct implementation, empowered patients and control of privacy. There are also disadvantages to the Dutch scenario: low adoption, high burden of responsibilities, lack of trust in information, lack of specifications and inaccessible information. The European patient summary can be fully realised in the Netherlands using a PHE, provided that the following three actions are completed: - Implementation of a new format for the patient summary in the PHE; - Extension of communication possibilities between the PHE and recipients of the patient summary; and - Inclusion of the NCPeH in the ecosystem of the PHE. As a result, it will be technically possible to create, consolidate and communicate patient summaries for Dutch citizens. However, the following four facilitating actions are essential for the success of the scenario: - Introduction of an improved method for consolidation of (conflicting) health information in the PHE; - Provision of eHealth literacy training in creating, sharing and using the patient summary for both the patient and the health professional; - Widening of coverage by means of a publicity campaign; and
- Introduction of patients’ rights such as patient confidentiality to retain control over personal health information. Ethical considerations related to implementing this scenario, such as a digital health divide, are clear and should not be ignored. However, the scenario is in line with the Dutch policies as it creates opportunities for patients to take matters into their own hands: to own and distribute (a summary of) their information with whoever they please. Other countries can also create scenarios for the realisation of patient summaries using the technologies that are being developed in their countries. A set of guiding questions is presented to help countries kick-start the creation of their future scenario.
Nederlandse samenvatting
Toegankelijkheid van gezondheidsgegevens over grenzen heen is noodzakelijk volgens de Europese Commissie. Hiervoor is de richtlijn betreffende grensoverschrijdende gezondheidszorg aangenomen, die ontwikkelingen aanspoort voor het uitwisselen van gezondheidsgegevens wanneer een Europese patiënt een ander Europees land bezoekt en ongeplande zorg behoeft. Binnen een Europees programma zijn twee usecases gedefinieerd: patiëntsamenvattingen en e-prescripties; voor twee rollen: het ontvangen van informatie door het behandelende land, en het aanleveren van informatie door het land van herkomst. Europese landen kunnen in verschillende fases meedoen aan dit programma voor ieder van de usecases en/of rollen, met nationale verantwoordelijkheid voor implementatie.
Het doel van deze studie was om de mogelijkheid van het creëren van een patiëntsamenvatting met behulp van een persoonlijke gezondheidsomgeving (PGO) te exploreren voor de Nederlandse situatie. De onderzoeksvraag is: In hoeverre kan de Europese patiëntsamenvatting gerealiseerd worden met een persoonlijke gezondheidsomgeving? Door middel van de interactieve backcasting methode werd een scenario van de Nederlandse toekomst samengesteld. Een scenario voor de Estlandse toekomst is toegevoegd voor vergelijking tussen het Nederlandse scenario en een scenario voor een ander Europees land wat de Europese patiëntsamenvatting implementeert met een nationaal elektronisch patiëntendossier (EPD) systeem. Voor de idee-articulatie fase zijn in totaal negen interviews uitgevoerd, die hebben geleid tot een eerste uitwerking van een visie. Vijf experts in patiëntsamenvattingen of PGO hebben deelgenomen aan een workshop waarin een opzet van de scenario’s zijn geanalyseerd en beide scenario zijn vergeleken. Het doel was niet om te kiezen welk scenario beter is, maar om voor- en nadelen te beschrijven, op basis waarvan faciliterende factoren beschreven zijn die de realisatie van het Nederlandse scenario kunnen verbeteren. Het resultaat is een scenario over een fictieve patiënt die op reis gaat en voorbereidingen treft voor mogelijke ongeplande zorg. Allereerst, updatet zij haar gezondheidsgegevens in haar PGO. Vervolgens maakt zij een samenvatting in haar PGO, en tot slot past ze de instellingen van de PGO aan zodat het Nederlandse nationale contactpunt voor eHealth (NCPeH) toegang heeft tot haar patiëntsamenvatting. In het tweede scenario is een Estlandse patiënt automatisch aangemeld voor het informatie-uitwisselingsprogramma in Estland. Haar dokters moeten de gezondheidsinformatie die zij van haar hebben, opsturen naar het nationale informatiesysteem. Het Estlandse NCPeH is verbonden met dit nationale informatiesysteem en genereert automatisch een patiëntsamenvatting op basis van deze gegevens. De voordelen van het Nederlandse scenario ten opzichte van het Estlandse scenario zijn: directe implementatie, patiënt aan het roer en controle over privacy. De nadelen zijn: lage adoptie, zwaarte van verantwoordelijkheden, gemis van vertrouwen in de informatie, tekort aan specificaties en ontoegankelijke informatie. De Europese patiëntsamenvatting kan volledig gerealiseerd worden in Nederland met PGOs, mits de volgende drie acties voltooid worden: - Implementeren van een nieuwe specificatie voor patiëntsamenvattingen in de PGO - Uitbreiden van de communicatiemogelijkheden tussen PGOs en ontvangers van patiëntsamenvattingen - Toevoegen van het Nederlandse NCPeH aan het ecosysteem van de PGO
Het is dan technisch mogelijk om patiëntsamenvattingen te maken, consolideren en communiceren voor Nederlandse burgers, maar de volgende vier acties zijn nodig voor het succes van het scenario:
- Introduceren van een betere methode voor consolidatie van (conflicterende) gezondheidsgegevens in PGO - Aanbieden van eHealth-geletterdheid trainingen voor het creëren, delen en gebruiken van een
patiëntsamenvatting voor zowel de patiënt als de professional - Verbreden van het bereik door middel van een publiekscampagne
- Introduceren van patiëntenrechten zoals het patiëntgeheim om controle te behouden over persoonlijke gezondheidsgegevens.
Ethische overwegingen gerelateerd aan het scenario, zoals hoe om te gaan met een mogelijke digitale gezondheidskloof, mogen niet genegeerd worden. Het scenario past echter wel binnen het Nederlandse beleid richtend op patiënt activatie, aangezien dit scenario de patiënt de mogelijkheid geeft om het heft in eigen handen te nemen. Andere landen kunnen ook scenario’s maken waarin zij exploreren welke (lokale) technologieën ingezet kunnen worden voor het realiseren van een Europese patiëntsamenvatting. Een lijst met vragen over wetgeving tot IT-infrastructuur kan landen helpen om hun toekomstscenario te maken.
Preface
This master thesis “Patients sharing their health information across borders” is submitted for the degree of Master of Science in Medical Informatics at the University of Amsterdam (AMC-UVA). It presents a future scenario for the Netherlands on cross-border health information exchange. The study was undertaken at Nictiz, the centre of expertise for eHealth. The study period of this scientific research project was from February to December 2018.
This scientific research project has challenged both my patience in fully understanding complex, multifaceted matters and creativity in finding out-of-the-box solutions. I am grateful to Floris Wiesman, Elise Peters and Michiel Sprenger, my supervisors for this project from AMC-UVA and Nictiz, for their continuous valuable help in these challenges. Your suggestions and our discussions have made this project a fruitful experience. I also thank Katre Pruul from the HWISC in Estonia for information on Estonian health and IT, Wouter Tesink for brainstorming with me for ideas for the discussion based on the workshop, and the experts that have participated in the workshop: Arina Burghouts, Manon Kuilboer, Roderik Kraaijenhagen, Paul Vermeulen and Wouter Tesink. Colleagues at Nictiz have taught me to never be afraid to ask questions, as the discussions that followed were interesting and shaped my research, so a thank you to: Albert Jan Spruyt, Paul Vermeulen, Charlotte Schreuder, Henk Hutink, Quintus Bosman, Gerda Meijboom, Melissa Obermann-Gasseling. Teachers, researchers and students at AMC have given more depth to the learning environment of the scientific research project: Ameen Abu-Hanna, Kitty Jager, Hugo van Mens and the students providing feedback at home coming days. Finally, I turn to my family and friends, as I am grateful for the confidence and feedback that you have given me during these months. Marianne Voogt Den Haag, 14 December 2018
List of abbreviations
eHN eHealth Network eHDSI eHealth Digital Service Infrastructure PHR Personal health record PHE Personal health environment EHR Electronic health record XIS Healthcare information system NCPeH National contact point for eHealth HWISC (TEHIK) Health and welfare information system centre (Tervise ja Heaolu Infosüsteemide Keskus) ENHIS Estonian national health information system LSP Landelijk schakelpunt (National Exchange Point) BGZ Basisgegevensset zorg (Basic Dataset for Healthcare) GDPR General data protection regulation Wcz Wet cliëntenrechten zorg (Law on Client Rights in Electronic Processing of Data) WGBO Wet op de geneeskundige behandelingsovereenkomst (Law on Medical Treatment Agreement) ReEIF Refined eHealth European interoperability framework
1
Introduction
In Europe, hardly any health information is exchanged yet on a cross-border level. As a result, when a European patient travels to a foreign European country, and unplanned care is needed, the physician has no information about that patient that can be used for treatment. The European Union (EU) aims at improving access to health information across borders by the exchange of a summary of a patient. Each country would have to provide a summary of their citizens which can be shared. Since such a provision would be difficult for the Netherlands to achieve, this thesis aims to explore a way to realise a patient summary in the Netherlands by looking into Dutch health and care IT developments and other countries’ implementations.1.1
European interest in patient mobility
The need for accessible health information across borders was pointed at by the European Commission. Although there is no direct European involvement in the execution of care, cross-border patient mobility is high on the agenda in the EU. A directive was adopted by the European Parliament in 2011 called “Directive on the Application of Patients’ Rights in Cross-Border Healthcare”(European Commission, 2011). As a result of this directive the eHealth network (eHN) was set up, a group of policy-level representatives of the ministries of health of the European countries. For this network, guidelines for two use cases were created: patient summary and ePrescription (eHealth Network, 2016a).The use case of patient summary will help health professionals with information about the patient during unplanned care. In unplanned care, there is no objective motive, such as a diagnosis, other than the patient’s complaints and there is no recent history available at the healthcare provider visited. Most common forms of unplanned care are a visit to a general practitioner or the emergency room. As a result of this characteristic, there is no referral information to the health professional seeing a patient, whereas this is the case in planned care (Guthrie et al., 2017). A patient summary provides a snapshot of a patient when the cause of the visit is yet unknown (eHealth Network, 2016b). A similar summary could also be used for referrals but this is out of the scope of this study, as is the use case of ePrescription, in which medical prescriptions are exchanged across borders.
1.2
National responsibility
The eHN set up a programme called European eHealth Digital Service Infrastructure (eHDSI) to establish these uses cases in European countries, who may join at their own pace. It aims at initial deployment and operation of services and will set up and deploy the core and generic services for patient summary and ePrescription (European Commission (DG Sante), 2018). The services are aimed at two potential roles for countries: to receive information (when the patient is abroad) by the country of treatment and to supply information by the country of affiliation. Countries may join the programme for either of the use cases, and per use case for either of the roles, in their own pace, in different phases1 and with their own responsibility for implementation.The placement of responsibility of implementation at the national level allows for variation in national infrastructure. Countries generally have existing national implementations, such as a national electronic health record (EHR) system2, and European guidelines are added to define how to communicate between member states (eHealth Network, 2016b). The European guidelines thus define on a conceptual level which information must be shared between countries, what the process will be on a cross-border level, which services, such as translation services, will be available, and how the foreign country will receive and read the provided data. The 1 These phases are called ‘waves’ by the eHealth Network. 2 The term national EHR system does not imply a centralised EHR system but is used to refer to a national infrastructure that allows for nation-wide health information exchange. The term national EHR system is defined and described in detail in section 3.2.
sending country relies on its own infrastructure to provide the information and the receiving country decides how to handle the information internally. The Netherlands does not have an implementation of a national infrastructure such as a national EHR system, an important enabler for the realisation of cross-border information exchange (including patient summary) as identified by the European Commission.
1.3
The Dutch developments
In the Netherlands there is not one national infrastructure for electronic health records (WHO, 2015). In April 2011, an Act on Electronic health information-exchange, also called Law on Electronic Patient Record has been rejected by the Dutch Senate. The primary reasons for rejection were concerns about privacy and safety of patient information (Herderscheê, 2018). A motion was accepted that requested the government to end any further policy, financial, and organisational cooperation in the development of a national infrastructure (Eerste Kamer der Staten-Generaal, 2011). Since then, no national infrastructure has been implemented and institutions have collaborated on a local or regional level in partnerships to share information about shared patients. Recently, the lacking national approach has been critically discussed in the Dutch media, although policy goals are aiming at a different direction. The technical journal Medisch Contact writes: “In 2011, the national EHR stranded in the Senate. Ever since, there is an increase – according to some a proliferation – of initiatives. The problem is that these initiatives are not connected.” (Maassen, Heilbron, & Olsthoorn, 2018). The Dutch media call for action from the Dutch government to a national approach. Instead of a national approach to one infrastructure, new policy goals are aiming at a different area of health information exchange. The goals focus on patient access and patient control of their health information through personal health environments (PHE). PHEs are (in short) used by care consumers to collect, manage and share their own health data and supports them in managing their health. By focusing on patient access and patient control of their health information, responsibility is placed on the patient.
1.4
Push towards active patients
Whereas the push towards a national EHR infrastructure has not worked out, there is a different push towards placing more responsibility on the citizen, patient or consumer3. Active patients are necessary for cost containment and achieving healthcare quality improvements (Hibbard, Stockard, Mahoney, & Tusler, 2004). The main developments part of this shift to patient activation as identified by the Rathenau Institute are (2018): - The Netherlands is transitioning from 'welfare state' to 'participation state'. - Patient's rights about their (health) data are getting a more central role in law and legislation. - More data is being generated and connected. - Traditional healthcare system has become a health market.These developments indicate a potential direction for the realisation of the patient summary, since active patients access, control and combine their own health information. The four developments will be discussed in order in this section. 1.4.1 Participation state Firstly, the Netherlands is transitioning from a welfare state to a participation state. The Ministry of Health in the Netherlands, one of the major stakeholders to define the agenda in healthcare (De Vries & Kossen, 2015), is investing heavily in the creation of a participation state. Such a state expects active citizenship, including an active role as a patient. An example is the VIPP programme, an acceleration programme for information exchange between patients and professionals. The Dutch government has made available €105 million for 2017-2019 in the form of subsidies. Main technologies that are stimulated by this programme are amongst others patient portals and PHEs – in essence technologies that allow information to be shared between patients and professionals. The modules that are part of the VIPP programme can be seen in Figure 1.1. As a result of improved
information exchange between patients and professionals, the government expects citizens to have a better picture of their health and therefore to be able to take responsibility for their health.
Figure 1.1: Programme modules of the Dutch acceleration programme for information exchange between patient and professionals. Adapted and translated from Dutch, from Nederlandse Vereniging van Ziekenhuizen (2018)
1.4.2 Patients’ rights on control
Secondly, Dutch citizens are gaining more rights on controlling their personal data. One of the driving forces of the VIPP programme was the recent law on client rights in electronic processing of data (Ministerie van Volksgezondheid Welzijn en Sport, 2017). This law provides patients with digital access to their health information, and rights to choose who to give permission to and what information to share- in essence, it provides patients with more control over their medical data. The VIPP programme aims to fulfil this requirement. Another recent law, the European general data protection regulation (May 2018) regulates how businesses may process and manage personal data. It is applicable to all businesses and organisations (thus also hospitals) (European Commission, 2018c). Both laws provide citizens with more rights to access and control their (health) data. 1.4.3 Connecting data Thirdly, more data is being generated and connected between healthcare providers. When health data from different healthcare locations is easier to access, it can be retrieved and connected to become information (or even knowledge). This requires high quality data that can be interpreted by the recipient. For example, data must use similar measurement units and standards. Similar documentation of data is thus essential. The VIPP programme focuses on standards to ensure that data quality is high throughout many participating hospitals in the Netherlands. Since the VIPP programme is an implementation programme, it does not develop new standards but uses existing national standards and increases their national coverage. Patients can access and retrieve more data and this becomes valuable when the data is of high quality and can be interpreted, which can be achieved through the implementation of standards.
1.4.4 Consumers, well-being and health markets Finally, the terms patient, citizen and consumer may become interchangeable now that healthcare systems are becoming health markets. Inherently health markets shift curative care to preventative care, and to well-being and customer experience of care. Health technologies are reflecting this shift too. New eHealth initiatives in the Netherlands are amongst others: e-consults; patient access (including patient portals and PHEs), video consult and digital support for self-care, as can be seen in the Dutch digital care guide (Digitale Zorggids, digitalezorggids.nl). This guide illustrates that the services are primarily owned by private parties. Although the government until thus far focused on curative care, the new public/private combinations are focusing on prevention, well-being and experience.
1.5
Europe too calls for patient engagement
The European Union has recently realised that patient empowerment is necessary too. The European Commission described the need for “digital tools for citizen empowerment and person-centred care” (European Commission, 2018a). The needed actions are based on the expectations of European citizens of transformations in digital health and care with regards to access and sharing of information: 90% of the European citizens expect to access their own health data, requiring interoperable and quality health data, and 80% expect to share their health data if privacy and security are ensured (European Commission, 2018b). The European Union responds to the expectations of European citizens by calling for patient engagement in the form of digital tools.
1.6
The only solution for the Netherlands?
Whereas other European countries are using national infrastructures such as a national EHR system for information exchange, presumably it will not be an option to introduce a national EHR system in the Netherlands. As indicated before an attempt was made in 2011 and rejected. Therefore, a non-conventional manner has to be considered. As described by Von Grätz (2018): For years, we have looked at Sweden, Denmark, Estonia, and, more recently, Austria and the UK when it came to studying examples of how to successfully introduce digital health information exchange. What all these countries have in common is rather monolithic healthcare systems that are run by either the national government or by state-like national insurance providers. In 2018 we will witness countries with diverse, federal, and partly private healthcare systems like the ones in Germany, Switzerland, the Netherlands or France beginning to catch up. However, when considering how the Netherlands could realise European patient summaries, the major question is not about, for example, the peer-to-peer connections with other countries, but about the creation of a summary on a national scale, due to the lacking national infrastructure. How does the Netherlands combine information that is stored in local and regional collaborations when it is also not known which patient is (or was) treated at which healthcare provider?
Presumably activated patients would know their healthcare providers and thus the locations of their health information. They would be able to retrieve and combine their own health information from these various locations by using a PHE. Since there are clear calls towards patient activation and engagement, could this be a solution to the Dutch problems: to let patients create their own summary and share it with health professionals if and when they wish to do so? The proposed idea is an excellent study of whether patient engagement could be combined with European goals. 1.6.1 Research question The aim of this study is to explore the possibility of creating a patient summary in the Netherlands by using a PHE in order to find an alternative yet realistic approach to the patient summary compared to other European countries. The research objective is phrased as the following research question:
To find out to what extent a European patient summary can be realised using a PHE, the terms patient summary, electronic health record and personal health environment are defined first.
What is the definition of patient summary (Q1), electronic health record system(Q2) and personal health environment (Q3)?
An exploration of the current health and IT landscape of the Netherlands follows. Additionally, a description of the Estonian landscape is presented, since they have high rates of digitisation and have been successful in introducing new health information technologies in the past years.
What does the current health and IT landscape look like in the Netherlands (Q4) and Estonia (Q5)?
After the exploration of the two countries, an interactive back-casting method was used to create a future scenario for the envisioned realisation of a European patient summary using a PHE in the Netherlands. Taking a dialectic approach to this method, a scenario for the planned realisation of a European patient summary using an EHR system in Estonia is created, which allows for comparison in questions 6 and 7.
How could a personal health environment be used for the realisation of the European patient summary in the Netherlands (Q6)?
How will an electronic health record system be used for the realisation of the European patient summary in Estonia (Q7)? The aim was to learn from the Estonian model and to integrate that knowledge into a realistic follow-up agenda for the Netherlands. What are the advantages and disadvantages to the realisation of the European patient summary from a personal health environment as compared to an electronic health record system (Q8)? What additional functionalities are needed to facilitate the use of personal health environment as a source for the European patient summary (Q9)? 1.6.2 Thesis outline This thesis is organised as follows. Chapter 1 introduced the research question and the methods used to study this question are described in Chapter 2. What follows in Chapter 3 is the theoretical background that defines the terms patient summary, EHR system and PHE. After the theory, the practical context of the Netherlands and Estonia are presented in Chapter 4. Chapter 5 continues with the scenarios outlining how the Netherlands and Estonia realise the European patient summary using a PHE or EHR system. The advantages and disadvantages of the Dutch scenario compared to the Estonian scenario as listed by a group of experts in a workshop are reported in Chapter 6. A list of facilitating factors to realise the scenario was specified by the experts, which is presented in Chapter 7. Chapter 8 provides the author’s reflection on the workshop. Conclusions are drawn in the Chapter 9.
2
Interactive back-casting method
This study’s aim is to show a possible coherent vision, called a scenario, of the Dutch future. An additional scenario for the future of Estonia is added to adhere a dialectic approach. The creation of a scenario means to navigate through the complexities, possibilities and impossibilities of the past and present, and to see a possible future scenario through these complexities. In essence, it can be seen as a balancing exercise between conceptual ideas and practical complexities. The aim of using the interactive back-casting method is twofold: to create substantive results, in this case two scenarios and an analysis; and to involve others in the process, which should result in follow-up activities and an increased awareness amongst Dutch health and IT experts. Finally, participation of relevant stakeholders is also important due to their specific knowledge and expertise of the problem and potential solutions. As a result, a future scenario of high quality is produced, and important stakeholders are involved.
Interactive back-casting is based on 5 steps (visualised in Figure 2.1), and combines analysis, design, participative, communication and management methods. During every step, a combination of these methods can be used. The five steps are: strategic problem orientation, development of a future vision, back-casting analysis, elaboration of future alternative and definition of follow-up agenda, and embedding of the results and agenda to stimulate follow-up (Quist, 2016). Other future studying methods are also possible, as can be seen in Figure B.2 (in Appendix B). Interactive back-casting is used because there is one specific vision that is explored. Figure 2.1: A methodological framework for participatory back-casting. Copied from Quist (2016)
2.1
Dialectic approach
In order to gain a deeper understanding of the envisioned scenario for the Netherlands, a dialectical approach was chosen. This means that a second scenario was created for Estonia. In essence, the Estonian scenario is a planned solution for the realisation of the European patient summary with which they are expected to be going live in the next years, whereas the Netherlands is only yet exploring the implementation of the patient summary. The Netherlands and Estonia differ in their national health model, government involvement in EHRs and (thus) mechanisms to information exchange. Table 2.1 shows these contrasting characteristics. In this dialectic approach, the two countries thus have the same goal (the realisation of a patient summary) but contrasting characteristics, which allows for comparing and contrasting.Table 2.1: Contrasting characteristics between the Netherlands and Estonia on health information exchange The Netherlands Estonia Exploring the implementation of patient summary Planning the implementation of patient summary Bismarck model Transition country to Bismarck model No government involvement in EHR systems Government control over information exchange No shared national infrastructure One shared national infrastructure Regional information exchange based on opt-in National information exchange based on opt-out No central storage of health information Central storage of health information
2.2
Strategic problem orientation
In the strategic problem orientation, the problem is discussed, scoped and analysed, and research questions 1-3 are answered: What is the definition of patient summary (Q1), EHR system (Q2) and PHE (Q3)? The major concepts are studied in a (grey) literature study (non-systematic). Major stakeholders in the problem area are government institutions, due to the government involvement in health information exchange in many countries, which is the reason for the inclusion of grey literature. Moreover, due to recent advances in the concepts of this study, as much recent academic literature is included as possible. In research question 4-5, the context of the scenario is studied briefly: What does the current health and IT landscape look like in the Netherlands (Q4) and Estonia (Q5). It is also studied by using (grey) literature, such as reports and professional magazines.2.3
Future vision development
The vision for the creation of a European patient summary from a PHE started out with an idea between the author of this study and the supervisors, which was gradually elaborated. It formed the preliminary answer to research question 6: How could a PHE be used for the realisation of the European patient summary in the Netherlands? For the dialectic approach, the Estonian scenario was created simultaneously, as an answer to research question 7: How will an EHR system be used for the realisation of the European patient summary in Estonia? Both scenarios must remain equivalent, regardless of their complexity, and thus the following requirements were set for the scenarios: “it must be plausible, relevant, logically consistent, new and distinctive compared to other scenarios, yet remain equivalent to those scenarios” (Van Dooren, 2014).2.3.1 Idea articulation and refinement
During idea articulation, interviews were conducted with stakeholders. In total, 9 unstructured and semi-structured interviews were conducted. For the Dutch scenario, 8 interviews were conducted: - 3 unstructured interviews with experts in health IT (on topics of patient summaries or PHEs); - 3 semi-structured interviews with experts from PHE software companies at the Health & IT fair (Zorg & ICT beurs 2018, https://www.zorg-en-ict.nl) in Utrecht; - 2 semi-structured interviews with CEOs from PHE software companies at location. Central questions were ‘to what extent can the European patient summary be realised using a PHE?’(during the unstructured interviews) and ‘could your PHE be used for a scenario where a patient wants to send the information to a European health professional in the case of unplanned care?’ (during semi-structured interviews). The software companies were selected for their presence in the Digital Care Guide (by the Dutch patient federation, https://www.digitalezorggids.nl) and for their accessibility (nearby The Hague or Utrecht). For the Estonian scenario, 1 semi-structured Skype-interview with the head of the data management division of the Estonian Health and Welfare Information Systems Centre (HWISC) was conducted to gain insight into objectives and plans for the realisation of the European patient summary in Estonia. The questions were both
general in nature as well as based on knowledge gaps and topics that were difficult to understand from prior research on online documents of the Estonian (digital) healthcare system. The interviewee provided documentation on the topics discussed during the interview to review some topics in depth after the interview. To create a future scenario from this input, patient journey mapping was performed. Patient journey mapping was traditionally done “to ‘see’ and understand the patient’s experience by separating the management of a specific condition or treatment into a series of consecutive events or steps” (Trebble et al., 2010). Patient journey mapping can thus also help at the beginning of an innovation process to create a systematic overview. A persona was used to help the researcher step out of herself, to be able to understand the expectations and needs of a patient. The Dutch MedMij programme has created personas for understanding the expectations and needs of patients when using PHEs, and thus it seemed appropriate to reuse one of these personas. Roos Dalstra was chosen out of 6 available personas for her appropriateness for this study. For Estonia, Katrin Aare was invented, with exactly the same (patient) characteristics as Roos.
2.4
Back-casting analysis
What follows is the back-casting analysis phase, in which the future vision is analysed, together with its problems, actors and/or feasibility. The story from the patient journey was translated to an elaborate scenario, which is thus the definitive answer to research questions 6 and 7: How could a PHE be used for the realisation of the European patient summary in the Netherlands, and how will an EHR system be used for the realisation of the European patient summary in Estonia? The scenario is then further analysed and strengths and weaknesses are identified. This answered research question 8: What are the advantages and disadvantages to the realisation of the European patient summary from a PHE as compared to an EHR system? 2.4.1 Individual process Since scenarios are typically a strategic management method, scenario analyses are often performed by using the dimensions of the PESTEL analysis method (political, economic, social, technological, ethical, and legal; see Figure B.3 in Appendix B), which is traditional for marketing (Allwood et al., 2008; Kirchgeorg, Jung, & Klante, 2010). Instead of a traditional (but more general) marketing method, a framework for eHealth interoperability will be employed instead, which is more specific for the given domain. The aim of the analysis is to translate the story of the patient journey to an elaborate scenario, including how the scenario would actually work. Thus, a draft of the scenarios was created, which contained the details of the analysis. The drafts were send to the Estonian interviewee and the supervisors of this study, and some minor revisions were made with their feedback. 2.4.2 Refined eHealth European Interoperability Framework (ReEIF) Interoperability can be defined in a strict or broad sense, and for (analysis of) eHealth interoperability a broad definition of interoperability is required, from legal to IT infrastructure. It is not merely a technological notion, but implies that information can be exchanged, interpreted and used to perform specific actions. “For interoperability to succeed in the eHealth domain, even this view is too narrow: the interoperability of legislation, processes and business relationships also needs to be considered within a more extensive health-related landscape.” (Directorate-General for the Information Society and Media (European Commission) & Deloitte, 2013). To analyse bottlenecks in interoperability, the Refined eHealth European Interoperability Framework, consisting of 6 levels of interoperability (legal and regulatory, policy, care process, information, application, and IT infrastructure; Figure 2.2) can be used to ensure eHealth interoperability in the broad sense.Figure 2.2: Refined eHealth European Interoperability Framework. Copied from eHealth Network (2015). 2.4.3 Workshop The (draft) scenarios and the ReEIF analysis served as an entry point for a workshop with experts with different backgrounds. The aim was to analyse the scenarios (question 1), describe advantages and disadvantages of the Dutch scenario compared to the Estonian scenario (question 2), and define the follow-up agenda for the realisation of the Dutch scenario (question 3).
2.4.4 Participants
In total, 5 experts in the field of healthcare and IT participated in the workshop, an ideal size for topics where the participants are expected to have more expertise or strong opinions (Bryman, 2016). The participating experts were selected because they are known to have been involved in work with PHEs in the Netherlands or the European patient summary. Their function description ranged from product manager, lead IT architect, cardiologist, co-founder of PHE application and policy advisor. Due to the complexity of the scenarios and the multitude of perspectives contained in one scenario, discussion between experts of different backgrounds elicits valuable insights. For example, a health IT expert specialised in infrastructure will prioritise the IT infrastructure perspective of the scenarios differently than a health IT expert specialised in policy. These two experts can thus react on each other’s views and come to a conclusion that suits both experts (or agree to disagree). A group of experts in the same field but with varying specialisations can generate a wider range of responses and discuss relative importance of each response. The experts were thus selected for their diverse expertise, and in such a way that each domain of the eHealth interoperability framework (ReEIF, explained in section 2.4.2) was represented. The legislation-perspective was underrepresented due to a last-minute cancellation. An overview of the experts, their expertise and the corresponding ReEIF domain can be found in Appendix B: Participating experts and their domain of expertise 2.4.5 Workshop guidance During the workshop, a guide was used to structure the session. The guide contained an agenda and descriptions on the techniques to use per question, thus being structured yet open-ended (Bryman, 2016). The focus group guide is included in Appendix B. The workshop guide was split up in an introduction, introductory question (question 1), main questions (question 2 and 3), and a conclusion.
In total, there were three organisers guiding the workshop. One organiser was the moderator, who ensures the flow of the workshop, another took the role of assistant, who takes notes and summarises when needed, and finally, one organiser took the role of researcher, who asks probing questions and ensures that the comments stay within scope.
2.4.6 Structure of the workshop In the introduction, the moderator thanks the people for coming, introduces himself and the other facilitators, outlines the goals of the research briefly, and presents some of the conventions of focus group participation (only one person should speak at a time, everyone’s views are important, and the amount of time that will be taken up). An important rule was added for the use of future scenarios during the workshop: the experts should aim to stay within the ideas of the future scenarios suggested, and should not search for alternative scenarios during the discussions, as suggested in (Van der Duin, 2016). A short introduction of the topic of the workshop is given, since most of the experts were involved with either PHEs or patient summaries, and thus it was essential to ensure that all experts had the same background knowledge needed to understand the questions asked. Consent was asked verbally for the use of the non-anonymised data of the workshop. During the first question, the experts discussed the draft future scenarios, their likelihood and logical consistency. For the second question, about pros and cons of the Dutch scenario, experts used post-it notes to write down their pros and cons individually. After 10 minutes of individual writing, experts explained their post-it notes to each other and combined them on a flipchart. The third question will be discussed in step 4: Elaborate future alternative and define follow-up agenda. 2.4.7 Materials used The experts and moderators used materials to facilitate the creative process during the workshop. During the entire workshop (but mainly used during the first question), experts used an A3-printout of the two envisioned future scenarios to scribble down comments and critiques. Experts used post-it notes to generate new ideas on advantages and disadvantages, and the moderators used two prepared flipcharts (titles of Flipchart-posters were drawn in advance) to combine and structure the post-it notes together with experts. Furthermore, QuickTime on a MacBook was used to audio-record the workshop, and a digital screen and prepared PowerPoint slides were used to introduce the experts to the topic of the workshop. Figure 2.3: Materials used during the workshop: digital screen for PowerPoint slides, MacBook to audio-record the workshop, prepared Flipchart-posters to facilitate the creative process. 2.4.8 Data analysis After the workshop, a loose transcription was made based on the audio recordings. The transcription was used for three goals: to revise the scenarios, create themes for advantages and disadvantages of the two scenarios, and define a follow-up agenda of facilitating factors or steps to realise the Dutch scenario.
Themes for advantages and disadvantages of the two scenarios were created bottom-up, single-handed by the author of this study. All post-it notes that participants created during the workshop contained the advantages and disadvantages that were considered for these themes. Several advantages and disadvantages were removed, due to their irrelevance to the study. Removal occurred in two situations: 1. when the advantage or disadvantage was scoped beyond the scenario, e.g. too broad
2. when the advantage or disadvantage was based on a false comparison, e.g. one of the future scenarios compared to the present.
The remaining advantages and disadvantages were turned into overarching themes. The advantages and disadvantages, the corresponding themes and the removed advantages and disadvantages were discussed and approved by the supervisors of this project.
2.5
Elaborate future alternative and define follow-up agenda
The follow-up agenda was discussed during the final part of the workshop, answering research question 9: what additional functionalities are needed to facilitate the use of PHE as a source for the European patient summary? This part of the workshop was a discussion without restrictions with 4 out of 5 participating experts (one person left after the second question) on the facilitating factors for the envisioned scenario for the Netherlands. The moderator used two pre-prepared flipchart-posters to write down ideas that the experts discussed. The experts used their A3-printout of the scenarios on which they wrote down comments during the workshop and the Flipchart-posters with advantages and disadvantages of the previous part of the workshop to generate new ideas for discussion. The result was a list of additional functionalities needed for the realisation of the Dutch scenario. After the workshop, the author reflected on the results from the experts and studied related literature to validate these reflections.2.6
Embed results and agenda and stimulate follow-up
This step is out of scope for this study, due to a lack of (political and field) authority of the author in the decision-making process to implement the scenario. The publication of this thesis might add more political leverage to embed the results in the Dutch health and IT ecosystem.
3
Theoretical background
The following section answers the research questions What is the definition of patient summary (Q1), EHR system (Q2) and PHE (Q3)? It resulted from an exploration of literature and combines literature from academia such as scientific journals and from non-academic sources such as government documentation or (non-scientific) journals. The exploration of patient summary is presented first, and then the potential vehicles to realise the patient summary are explored (i.e. EHR system and PHE).
3.1
What is a Patient Summary?
Many terms are in use for a seemingly similar concept. In academic literature, the term electronic summary care record (SCR) is frequently used. This is defined by Coiera (2011) as an extension of the concept of digital health summaries “to create a perpetually updated and centrally stored summary of care, extracting key data from local systems after each [clinical] encounter”. It is thus a summary of information that is considered necessary for the health professional to know. The terms shared electronic summary record, shared health summary, electronic health summary are used interchangeably in academic articles. Moreover, each country names their implementation of SCR differently. Implementations of SCR differ in scope, purpose and/or mechanism. 3.1.1 Definition The European Union calls the SCR a ‘patient summary’, which they define as an identifiable “dataset of essential and understandable health information” that is made available “at the point of care to deliver safe patient care during unscheduled care [and planned care] with its maximal impact in the unscheduled care” (eHealth Network, 2016b). It can also be defined at a high level as: “the minimum set of information needed to assure Health Care Coordination and the continuity of care” (eHealth Network, 2016b). This high-level definition describes patient summary in the strict sense: as a dataset. In the broad sense, patient summary includes the mechanisms for its creation, consolidation4, communication and usage. Throughout the thesis, the term patient summary is used to refer to patient summary in the broad sense. We will refer to the patient summary as the European patient summary to specify the context. 3.1.2 Purpose The purpose of the European patient summary is the sharing of information about the medical background and history of a patient from the patient’s country of affiliation with a health professional in the country of treatment (a different European member state). As defined, the maximal impact lies in unplanned care, and with no recent history in the HCP visited (eHealth Network, 2016b). The focus on unplanned (i.e. emergency) care is deliberate in that it requires agreement on those data items needed when a patient previously unknown to the health professional needs treatment. The focus on unplanned care and cross-border scale is specific to the European patient summary, as SCR does not specify the purpose of use. These elements are thus specifically the scope of the European patient summary. On the contrary, the United Kingdom has implemented a national SCR (NSCR), which is not confined to sharing information with a professional during emergency care but comprises patient access and enrichment of the summary by health professionals. The UK’s SCR “is created from a person’s existing NHS record […] and made available to NHS staff in emergency and unscheduled care situations (accident and emergency departments, general practice out of hours clinics, and walk-in centres)” (Greenhalgh et al., 2008). Individuals may “register to view their record via an internet-accessible personal health organiser”, and general practices may “‘enrich’ their patients’ records with additional data fields”, such as end-of-life care preferences (Greenhalgh et al., 2010). 4‘Consolidate’ in this context is defined as the process of combining data into a single more effective or coherent whole.3.1.3 Mechanisms The process of cross-border exchange on European level is through peer-to-peer connections via a so-called National Contact Point eHealth (NCPeH), which refers to “the unique entity on a national level authorised by a Member State to provide an interface between the national and European aspects of cross-border exchange” (eHealth Network, 2016a). Thus, there are 28 countries with a NCPeH in a peer-to-peer configuration. A country’s NCPeH is connected to its own national infrastructure, see Figure 3.1. Due to this construction, member states can remain their own national infrastructures even if they are different. On the contrary, within the context of a regional or national SCR the exchange of information does not necessarily require an interface between multiple infrastructures. For instance, there can be one connected national infrastructure and one clinical data repository. For example, the English NSCR, has one national infrastructure called the Spine. All authorised healthcare institutions can connect, see Figure 3.2. This is done through clinical systems or web viewers, and only with the right identification and authentication. The SCR is centrally stored in a database (Greenhalgh et al., 2008). Figure 3.1: Simplified patient summary process. Copied from European Commission (DG Sante) (2017) Figure 3.2: A small amount of clinical information will be passed from EPRs to the SCR on the NHS Spine. This may be directly or via a clusterwide database link. GP EPRs will link directly to the NHS Spine. Adapted from Tackley (2006).
3.1.4 Content A guideline by the European Commission defines the content for the patient summary on a high level. It specifies three datasets, i.e. patient administrative data, patient clinical data and metadata. These data elements can all be considered necessary for safe treatment of patients in unplanned care. The patient administrative dataset contains general information about a patient and which health professional to contact for more information. The patient clinical dataset contains information on allergies, medical problems and history, and medication summary. The metadata concerns where and when the patient summary was created, and what the nature of the patient summary is. An elaborate overview of the data elements in the three data sets can be found in Appendix C: Guidelines on content of patient summary (eHealth Network, 2016b)
As the European patient summary’s content is designed for the use case of cross-border unplanned care, other (national) SRCs with disparate purposes have slightly different data elements and possibly from other sources. For instance, the Scottish Emergency Care Summary (ECS) aims “to improve the safety of patient care in unscheduled consultations when the GP practice is closed” (Morris, Brown, Williamson, & Wyatt C., 2012). The content of this dataset therefore focuses on GP information and is built up from GP systems’ information. Compared to other SCRs, the ECS contains only a few data elements: personal information, patient’s GP, medications and alert information (Ikoev, 2016).
5
3.1.5 Semantic considerations
For the health professional to actually be able to use the summary, he or she must be able to understand it. When different languages are spoken within a country or cross-border, that language may not always be understood by other health professionals treating the same patient. This is certainly the case in the European patient summary, where patient summaries are delivered in the language from the country of origin, using the codes and standards that are common in that country in the language of that country. To convey meaning and context, the European patient summary is provided to the treating health professional in the original language, in English and in the language of the treating health professional. Coding schemes such as ICD-10, SNOMED CT or LOINC must be used to enable translation processes. Translation happens when different text labels (in different languages) are attached to one code, and the provided text label can be exchanged with the label in the requested language. This is different as compared to a national SCR (in a country which has only one official language), as is described for the Scottish ECS: “Codes are not particularly important for ECS. Most of the data is mainly a structured free text view at the interfaces with the GP systems” (Jones et al., 2009). In other words, when information is exchanged in one language, interpretation of the information by the recipient is possible if the system can pinpoint to specific data elements requested, and the system does not need to know the content of the element for translation. When the setting of information exchange contains multiple languages, interpretation of the information requires the translation of information. Moreover, this translation process only holds true when different countries use the same coding systems, otherwise mapping between coding systems needs to be added to the process. 5 The aim of these text boxes is to provide the interested reader with notes on practical situations in the Netherlands, and how they relate to the presented theory or conceptual ideas. In essence, it counters certain critiques that (Dutch) readers often have upon reading the theory. Such text boxes will appear throughout the next chapters. Box 1: A deeper look at theory in practice in the Netherlands5: is the GP locum tenancy summary in the Netherlands a patient summary? According to some (Health Information and Quality Authority, 2016) the Dutch locum tenancy summary can be considered a patient summary too. Similar to the Scottish ECS, the source of the content is from the GPs, and thus the aim of the Dutch locum tenancy summary differs. Moreover, in the Netherlands the GP locum tenancy summary may only be accessed by locum tenants, i.e. other GPs, and no other health professionals. Many discussions with the GP federation and emergency care doctors have taken place, since, according to other health professionals, other health professionals would benefit from this information. The GPs, however, stand behind their doctor patient confidentiality (Schregardus, 2015).
Moreover, the health professional must be able to rely on the information from the summary. It must be clear what the source is of an information element, since the quality of sources varies. For example, sources such as medical records or other administrative databases used to pay bills or to manage care could be used for the summary, each having different primary purposes and levels of quality. Moreover, reconciliation methods may become more complicated with the usage of multiple sources. As a result, conflicts in the data are possible, leading to lower reliability of the dataset. Finally, missing data form a real complexity for health professionals interpreting an SCR, since missing data can be due to a lack of collection, or a lack of documentation (Wells, Chagin, Nowacki, & Kattan, 2013). Every stakeholder, including the facilitating actors, and actors receiving information, must engage in taking appropriate measures to ensure semantic interoperability.
3.1.6 Related terms
Minimum Data Set (MDS) and Continuity of Care Document (CCD) are two related terms. MDS is a defined core set of key information that could be shared among physicians treating the same patients (Organization for Economic Co-operation and Development, 2013). CCD is a standard for representing clinical documents (Matney, Dolin, Buhl, & Sheide, 2016). These terms appear similar due to their content. The key differences between patient summary, MDS and CCD are its purpose, scope and/or mechanisms. MDS is a standard that defines the information: which information and how to code it. Lacking are mechanisms for amongst others creation, consolidation and communication, for accountability and availability, and for reliability and retrievability. In essence the MDS defines only the information, and not where or when in the care process it will be used, or with which application or infrastructure. Although the purpose of the MDS is not confined to patient summaries, it could be a standard used for patient summaries. This is not the case with CCD. Although the content could be similar and could thus theoretically be used for patient summaries, the (defined) key purpose of CCD lies in planned care. CCD’s mechanisms for its creation, transmission and retrieval are thus made for referrals. The relationship between patient summaries, MDS and CCD can be seen in Figure 3.3 Figure 3.3: Relationship between Patient Summary (PS), Minimum Data Set and Continuity of Care Document Box 2: A deeper look at theory in practice in the Netherlands: is the BGZ in the Netherlands a Minimum Data Set or a Patient Summary? The Netherlands is implementing the Basisgegevensset Zorg (BGZ; Basic Dataset for Healthcare). The BGZ is defined as: “the minimum set of patient data that is relevant beyond specialisations, diseases and profession disciplines and is important for the continuity of care” (Smeele, 2016) and is thus in the strict sense an MDS. The content of the BGZ has been designed to contain at least the same elements as the European patient summary, and stakeholders are developing the mechanisms to use the BGZ in practice as a patient summary. The phases in the practical use of the BGZ are the following: 1. recording information; 2. generating the BGZ; 3. sharing the BGZ; 4. using the BGZ’s information. Many stakeholders see the potential value of BGZ for the implementation of patient summaries., i.e. sharing the BGZ on a cross-border level. Although progress is being made with the practical implementation of the BGZ, this model is still conceptual. None of these steps are currently practically possible, although progress is being made.
3.2
What is an Electronic Health Record system?
An electronic health record (EHR) system is a system for the creation, management and consultation of electronic health records used by health professionals. The EHR system is “a secure, real-time, point-of-care, patient-centric information resource for clinicians” (Abdelhak, Grostick, & Hanken, 2012). It is thus the digital working environment used by health professionals in one institution to store, order, manage and exchange information about (shared) patients, and potentially more, depending on the practical implementation. Before diving deep into EHR systems, an explanation of electronic health records will be provided. EHRs are defined by the Organization for Economic Co-operation and Development (2013) as an “electronic record of a patient’s key characteristics and health concerns, as well as their history of encounters with the health care system and the treatments that they have received from a variety of health care providers”. It is thus a longitudinal record, containing past and present information from multiple health professionals about one patient. In essence, when people speak about EHR they mean the digital clinical working environment of the health professionals, including the creation, management and consultation of the records, and not purely the information in the record. Throughout this thesis, the term ‘electronic health record’ and ‘electronic health record system’ will be used interchangeably.
3.2.1 Purpose
The purpose of an EHR is to aid clinicians’ decision-making process by providing access to the health record wherever and whenever they need it. Additionally, evidence-based decision support in the form of clinical decision support (CDS) functionalities are incorporated (Fowler et al., 2014). It is also possible to perform workflow management or digital consultation with colleagues. Thus the EHR will become more than just a record lead to improvement of the quality and safety of care for individual patients, as well as the facilitation of optimal care pathways, and improved efficiency of the use of health resources (Organization for Economic Co-operation and Development, 2013). A secondary purpose is the collection of data for uses other than direct clinical care, such as billing, quality management, outcomes reporting, resource planning, and public health disease surveillance and reporting (Abdelhak et al., 2012).
Although historically used in a single institution, EHR systems can also be used between institutions, on a regional, national or global level. As the capability of to exchange data across settings grows, coordination of care can be achieved, and cost and quality benefits expand. To do so, the quality of the EHR systems must be ensured, such as interoperability to ensure the exchange of information. Other requirements for high-quality EHR systems concern, amongst others, data security, content, usability, reliability, privacy and data protection, maintainability, performance/efficiency and portability (Hoerbst & Ammenwerth, 2010). 3.2.2 Architecture approaches
There are two main architectural models, that define an EHR system’s interoperability with other EHRs: centralised and distributed. 3.2.3 Centralised EHR In a centralised architectural model, also called top-down approach, one central repository stores the EHR data from a nation. Duplicates of the EHR data are sent to the central point by health professionals, either periodically or in real time. The EHR data stored in the central repository may be a summary of the information in the EHR system of the healthcare providers or a complete set of information. The centralised model is generally directed by government (or a small group of affiliates), with the central procurement of standardised healthcare IT systems to replace existing diverse systems (Fragidis, Chatzoglou, & Aggelidis, 2016; Morrison et al., 2011). In the broad sense, the central repository in the centralised architecture could also deliver health data to patients, not only to professionals, by using a patient portal to access the repository.
