JOURNAL OF MEDICAL INTERNET RESEARCH

Hägglund et al

Viewpoint

A Nordic Perspective on Patient Online Record Access and theEuropean Health Data SpaceMaria Hägglund1,2, PhD; Anna Kharko1,3, PhD; Annika Bärkås1, PhD; Charlotte Blease1,4, PhD; Åsa Cajander5, PhD;
Catherine DesRoches4, DrPH; Asbjørn Johansen Fagerlund6, PhD; Josefin Hagström1, MSc; Isto Huvila7, PhD; Iiris
Hörhammer8, DSC; Bridget Kane1,9, PhD; Gunnar O Klein10, MD, PhD; Eli Kristiansen6, MEc; Jonas Moll10, PhD;
Irene Muli1, MSc; Hanife Rexhepi11, PhD; Sara Riggare1, PhD; Peeter Ross12,13, PhD, MD; Isabella Scandurra10, PhD;
Saija Simola8, MSc; Hedvig Soone12, MSc; Bo Wang6, BMed, MPH; Maedeh Ghorbanian Zolbin8, MBA; Rose-MharieÅhlfeldt11, PhD; Sari Kujala8*, PhD; Monika Alise Johansen6*, PhD
1Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden

2

Medtech Science & Innovation Centre, Uppsala University Hospital, Uppsala, Sweden

3

School of Psychology, Faculty of Health, University of Plymouth, Plymouth, United Kingdom

4

Division of General Medicine, Department of Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, United States

5

Department of Information Technology, Uppsala University, Uppsala, Sweden

6

Norwegian Centre for E-Health Research, University Hospital of North Norway, Tromsø, Norway

7

Department of ALM, Uppsala University, Uppsala, Sweden

8

Department of Computer Science, Aalto University, Espoo, Finland

9

Business School, Karlstad University, Karlstad, Sweden

10

Centre for Empirical Research on Information Systems, School of Business, Örebro University, Örebro, Sweden

11

School of Informatics, University of Skövde, Skövde, Sweden

12

E-Medicine Centre, Department of Health Technologies, Tallinn University of Technology, Tallinn, Estonia

13

Research Department, East Tallinn Central Hospital, Tallinn, Estonia*

these authors contributed equally

Corresponding Author:
Maria Hägglund, PhD
Participatory eHealth and Health Data Research Group
Department of Women's and Children's Health
Uppsala University
Dag Hammarskjölds Väg 14b, 1 Tr
Uppsala, 752 37
SwedenPhone: 46 729999381
Email: maria.hagglund@uu.se

Abstract
The Nordic countries are, together with the United States, forerunners in online record access (ORA), which has now become
widespread. The importance of accessible and structured health data has also been highlighted by policy makers internationally.
To ensure the full realization of ORA’s potential in the short and long term, there is a pressing need to study ORA from across-disciplinary, clinical, humanistic, and social sciences perspective that looks beyond strictly technical aspects. In this viewpoint
paper, we explore the policy changes in the European Health Data Space (EHDS) proposal to advance ORA across the European
Union, informed by our research in a Nordic-led project that carries out the first of its kind, large-scale international investigationof patients’ ORA—NORDeHEALTH (Nordic eHealth for Patients: Benchmarking and Developing for the Future). We argue
that the EHDS proposal will pave the way for patients to access and control third-party access to their electronic health records.
In our analysis of the proposal, we have identified five key principles for ORA: (1) the right to access, (2) proxy access, (3) patient
input of their own data, (4) error and omission rectification, and (5) access control. ORA implementation today is fragmented
throughout Europe, and the EHDS proposal aims to ensure all European citizens have equal online access to their health data.
However, we argue that in order to implement the EHDS, we need more research evidence on the key ORA principles we havehttps://www.jmir.org/2024/1/e49084

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Hägglund et al

identified in our analysis. Results from the NORDeHEALTH project provide some of that evidence, but we have also identified
important knowledge gaps that still need further exploration.
(J Med Internet Res 2024;26:e49084) doi: 10.2196/49084
KEYWORDS
patients’ online record access; open notes; electronic health records; EHR; patient portals; European Health Data Space; digital
health; health care; patient access

Introduction
The digitalization of health care is increasing rapidly, changing
the way patients communicate and collaborate with health careproviders. The importance of access to and use of digital healthdata became even more evident during the COVID-19 pandemic[1], including the use of online patient portals and patients’
online record access (ORA) [2]. The Nordic countries are,together with the United States, forerunners in providing theirresidents with online tools that enable interaction not only withhealth care but also with the patient’s own health data [3]. ORA
has become a key means to these ends [4-6]. National patient
portals have been implemented in all Nordic countries, enabling
residents to access different health-related e-services, forexample, patient-accessible electronic health records (PAEHRs).
In the United States, legislation mandates patients to have ORA[7]. Textbox 1 provides an overview of key concepts related topatients’ ORA that will be used in this paper.

Textbox 1. Key terminology.
Electronic health record (EHR)
The World Health Organization defines EHRs as “shared patient records that contain historical data about a patient that are compiled from all local
Electronic Medical Records” [8].
Patient-accessible EHR (PAEHR)
PAEHRs are online services providing patients secure access to view and sometimes edit or comment on their electronic health records (EHRs) madeavailable by their health care providers [5], that is, online record access (ORA).
European Health Data Space (EHDS)The EHDS is a health-specific ecosystem comprising rules, common standards and practices, infrastructure, and a governance framework [9].
Open notes
Online access to the visit note summaries, or the narrative, free-text entries, written by clinicians about patient health.
ORA
ORA has been used as a “solution-neutral” concept to describe the phenomenon of patients’ online record access [10]. ORA can be implemented
through a PAEHR or any other technical system that gives patients access to their health records online.
Patient portal
Patient portals are online portals that can be provided locally by a specific health care provider or nationally, as is the case in the Nordic countries.
Patient portals are increasingly used to provide patients with ORA. In some patient portals, a PAEHR is provided as a specific service [11], whereas
others may have more seamlessly integrated ORA through different patient portal functions. In a local patient portal, patients often have ORA to only
1 specific EHR system, whereas national patient portals can provide ORA to several EHR systems.

In many countries, ORA is considered a logical extension ofpatients' already existing legal rights to request copies of theirhealth records. ORA provides a rapid and convenient methodof accessing the information held by clinicians that increases
the total number of patients who read their records. Considering
the growing body of evidence presenting the benefits of ORA
for the individual (in terms of improved health outcomes andself-management) [4-6,12,13], we argue that healthorganizations in other countries can learn from the Nordic
experience and should also consider striving to provide patients’
ORA [14].
In parallel with the increased use of digital health services, theimportance of accessible and structured health data has also
been highlighted by policy makers internationally. In the UnitedStates, a federal rule in the 21st Century Cures Act mandates
that US health care providers offer patients access, with few
exceptions, to all the health information in their electronic
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medical records without charge [7]. The 21st Century Cures
Act is also motivated by the idea of a health app economy, and
it is mandated that patients’ health information be available ina form that is downloadable to third-party apps. In Europe, theproposal for an EHDS aims to both empower people to control
and use their health data in their home country or other member
states, as well as offer “a consistent, trustworthy and efficient
framework to use health data for research, innovation, policy
making, and regulatory activities, while ensuring full compliancewith the EU's high data protection standards” [9]. Furthermore,
the EU has adopted the NIS directive (EU 2022/255), whichsets requirements for security in networks and information
systems. The rules cover providers of socially important services
and certain digital services where health care is a designatedsector [15].
Despite growing international evidence that ORA has thepotential to empower patients and yield many health benefits,
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its implementation has not always been straightforward [16,17].
Not all patients use online portals [4,5,12,18], and ORA remains
controversial among providers [10,19]. Health care professionals
have raised concerns regarding patient ORA in several contexts
where it has been implemented [10,20-23]. The concerns include
that patients might misunderstand what they read and become
worried, and that clinicians’ workload will increase as patientsask more questions, both during and between appointments.
Within mental health care, such concerns have been especiallyprominent [19,22,24].
Despite clinicians’ concerns and the need for a more fine-grained
policy concerning, for example, proxy access (when an informal
caregiver, such as a family member, has ORA on behalf of apatient) [25], psychiatric care [26], and ethical exemptions from
ORA [27], mounting international experience challenges
clinicians’ skepticism and evinces the benefits to patients ofthis practice innovation [28]. Nonetheless, as the shift towardgiving patients more autonomy over their health data isunderway, there is an urgent need to address more contested
aspects of ORA. Doing so may simultaneously offer guidance
to other countries, where implementation is currently lagging
behind. We argue that to ensure the full realization of its
potential in the short and long term, there is a pressing need to
study patients’ ORA from a cross-disciplinary, technical,
clinical, humanistic, and social science perspective that looks
beyond narrow technical aspects of implementation [29]. A
project that aims to do this is the NORDeHEALTH research
project, launched in 2021 [3]. NORDeHEALTH focuses on
studying novel digital services and innovation, exploring
different ways to make national patient portals and patients’
ORA more useful to both patients and health care professionals,
supporting person-centered care, patient self-management, andempowerment, as well as collaboration.
In this viewpoint paper, we will summarize the key policychanges in the EHDS with relevance to ORA and discuss the
proposed changes in the context of the latest research findings
from the Nordic Region through the NORDeHEALTH project.

The European Health Data Space andPatient Online Record Access
The EHDS proposal aims to “improve access to, and control
by, natural persons over their personal electronic health data inthe context of health care (primary use of electronic health data),
as well as for other purposes that would benefit the society suchas research, innovation, policy-making, patient safety,
personalized medicine, official statistics or regulatory activities(secondary use of health data)” [9]. “Natural person” is a legal
term used to signify an individual human being, distinguishingthem from a “juridical person,” which can encompass otherentities too. We will use “person” in our text to signify a “natural
person,” unless in a direct quote from the EHDS proposal.
Negotiations among EU member states have been completed,
and in April 2024, the European Parliament adopted the EHDS
proposal. Once the new EHDS regulation is formally adopted,
which is expected to be in autumn 2024, it will become
applicable in different stages according to use case and data

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Hägglund et al
type, allowing member states time to adapt to the regulation[30].
Primary use of electronic health data is the main focus ofpatients’ ORA and is further defined as the processing of
personal electronic health data for the provision of healthservices to assess, maintain, or restore the state of health of thenatural person to whom that data relates, including theprescription, dispensation, and provision of medicinal products
and medical devices, as well as for relevant social security,
administrative, or reimbursement services.
Embedded within the EHDS Chapter 2, Primary use ofelectronic health data, Section 1, Article 3 describes the “rights
of natural persons in relation to the primary use of their personal
electronic health data” [9]. In our analysis of the EHDS
proposal, we have identified 5 key principles of high relevancefor patient ORA, where results from the NORDeHEALTH
project may contribute to the design and implementation of the
EHDS across Europe. The five principles we have identified
are (1) the right to access, (2) proxy access, (3) patient input of
their own data, (4) error and omission rectification, and (5)access control.

Overview of the NORDeHEALTH
Research Project
The NORDeHEALTH project, funded by NordForsk (grant
100477), has research partners in Sweden, Norway, Finland,
Estonia, and the United States. The goal is to enable further
digitalization of the public health sector by providing concrete
feedback to the national authorities in the respective countries
and providing guidelines and frameworks for the design,
implementation, and evaluation of patients' ORA as well asother eHealth services.
The foundation for the NORDeHEALTH research project is asociotechnical analysis of the context in the respective country
using a model proposed previously [29,31]. The model defines
eight dimensions that are essential to consider when designingand implementing sociotechnical systems in health care: (1)hardware and software, (2) clinical content, (3) human-computerinterface, (4) people, (5) workflow and communication, (6)internal organizational policies, procedures, and culture, (7)external rules, regulations, and pressures, and (8) systemmeasurement and monitoring [31]. Key focus areas in the
NORDeHEALTH research project have included policy andregulations for patients’ ORA in mental health care [32-34],
ORA for adolescents and parents [25,35], and ORA within
oncology, specifically focusing on multidisciplinary teamconferences. The project also investigates benchmarking for
the usability and acceptance of national patient portals andpatients’ ORA [6,36], which iteratively feeds into the co-designof novel ORA and patient portal functionality.
Empirical data in the project is gathered by exploring the needsof specific patient and demographic groups using the current
implementations of PAEHRs as a case; patients with mental
health disorders, patients with cancer, and adolescents and theircaregivers. Most research into patient ORA to date collects datafrom one country or region [4-6,12], making it difficult to
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compare results across contexts. In the NORDeHEALTH
project, we therefore designed an international cross-sectional
survey study, and in 2022, data were collected simultaneously
in Sweden, Norway, Finland, and Estonia [37]. The survey
aimed to study patients’ experiences with the PAEHR provided
through the national patient portals in the respective countries.

Hägglund et al
Textbox 2 provides an overview of how the NORDeHEALTH
research contributes to the patient ORA principles we haveidentified in the EHDS proposal: (1) the right to access, (2)proxy access, (3) patient input of their own data, (4) rectifying
errors and omissions, and (5) access control. In the next sections,
we further deepen the analysis of the 5 principles.

Textbox 2. Online record access (ORA) principles in the context of recent research from the Nordics.
The right to access•

Despite the many similarities, ORA implementation varies in the Nordic region.

•

Patients’ experiences depend on platform usability.

Proxy access•Current regulations for parental and adolescent proxy access greatly differ between the Nordic countries.

•

Proxy access other than parental has even greater variation, and is not allowed in, eg, Sweden.

Patient input of their own data•

Despite the advanced stage of ORA in the Nordic countries, patient input is not widely available.

•

Nordic patients have expressed repeated interest in the ability to contribute to their record.

Error and omission rectification•

A high number of Nordic patients find serious errors in their records through ORA.

•

Some groups of patients report more errors than others.

•

At present, only a minority of Nordic patients attempt to rectify the errors.

Access control•

A minority of Nordic patients have reported unwanted access to their electronic health records

The Right to Access
The Proposal
The EHDS proposal clearly states that “natural persons shallhave the right to access their personal electronic health data”
immediately, free of charge, and in an easily readable,
consolidated, and accessible form [9]. This is not limited toelectronic health records (EHRs) data, but considering the EHR's
core role for documentation in health care, patients' ORA must
be considered essential for EHDS. Article 3, paragraph 2,
continues to declare that:natural persons shall have the right to receive anelectronic copy, in the European electronic healthrecord exchange format […] of at least theirelectronic health data in the priority categories
referred to in Article 5 [9].
These include patient summaries, electronic prescriptions,electronic dispensations, medical images and image reports,
laboratory results, and discharge reports.

The Research
Many European countries already have legislation stipulatingthat patients should have ORA [16]. In Norway, the patient isboth the object and the owner of the health record. The
Norwegian Patient Rights Act of 2001 states that patients havethe right by law to access their health records [38], and in 2013,https://www.jmir.org/2024/1/e49084

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In Germany, the Patient’s Rights Act of 2013 stipulates that
health care professionals must document diagnosis and treatment
promptly and comprehensively. It grants patients the right tofully view their records and attain an electronic copy [40], yet
progress in implementing patients’ ORA has been slow. In the
Netherlands, patients have had the right to a digital copy of all
the information in their EHRs since 2020 [17], and different
types of incentive programs have been implemented toencourage health care providers to provide such access.
Given the current challenges in implementing patients' full ORA
across Europe, the EHDS proposal is ambitious. Mandating
patients’ ORA is to be broadly encouraged, considering thepositive experiences reported by patients with full ORA, but
experiences show that regulations are often not enough to ensure
implementation.
The NORDeHEALTH project has designed and tested asociotechnical framework for studying and comparing factorsthat affect the implementation and adoption of patient ORA.
The framework was designed based on the existing Sittig andSingh sociotechnical framework [31]. ORA-specific factors are
explored related to, for example, what information patients haveaccess to and when they can access it (immediately or with adelay), what functionality is provided (eg, being able to upload
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or edit information, proxy access), rules and regulations for
ORA (on national or local levels), the usability of the PAEHR,
technical infrastructure, and population characteristics (eg,educational levels, digital literacy, and diversity). An in-depth
understanding of the local sociotechnical context is essential
for comprehending the impact of ORA and being able to design
successful interventions for implementing ORA. A study on
the implementation of ORA in Sweden and the Netherlands
identified resistance from health care professionals and technicalinfrastructure challenges as main barriers, whereas existing
national infrastructure and program management, strong
leadership, and stakeholder engagement (including both patientsand health care professionals) were identified as success factors[17].

Viewpoint
We argue that simply enabling ORA is not enough to ensurethat all patients can use it. Usability is a key factor in the
adoption of ORA [41]. Therefore, the NORDeHEALTH project
strives to benchmark PAEHR usability [6] and investigate how
it affects the acceptance and adoption of PAEHRs among
different patient groups.

Proxy Access
The Proposal
In the EHDS proposal, proxy access is described in Article 3,
paragraph 5. Member States shall:establish one or more proxy services enabling anatural person to authorize other natural persons of
their choice to access the electronic health data on
their behalf [9].
This includes guardians and other representatives, either
automatically or upon request.

The Research

Hägglund et aloften at great burden [44,45]. Thus, health care outcomes highly
depend on the competence and ability of informal caregivers.
Still, informal caregivers are often left out of the conversation[46], not the least when digitalization is introduced, and informal
communication needs to be formalized.
In the NORDeHEALTH project, research into proxy accessfocuses on how parental ORA differs between the participating
countries [25] and what this could mean for streamlining proxyaccess across Europe. Further studies on parental proxy accessand adolescents’ ability to deny access in certain situations arein process. For general proxy access, there is even greater
diversity across countries and even less research available.
Internationally, when patients are given online access to theirrecords, they are often given the option to share their records
with a proxy if needed, usually a close family member such asa spouse or adult son or daughter [47]. In a US study, 2 out of
3 surveyed hospitals offered adult patients the option of granting
portal access to an informal caregiver, but among hospitals thatdid, the process for obtaining proxy credentials was often
difficult and time-consuming [48]. In the original Swedish
implementation of ORA, patients could assign a proxy to beable to access their records. This function was available after
secure log-in to the record, and the patient could assign accessto any person in Sweden by adding the social security numberof the person and choosing what parts of the PAEHR to share[49]. Despite this flexibility of the solution, the Swedish
Authority for Privacy Protection requested the function be shut
down, and after several appeals from Region Uppsala, theSupreme Administrative Court in Sweden finally decided toprohibit the function where patients can share their information
with others, finding it to be in conflict with the Patient Data Act(a part of the Swedish Data Protection Act (2018:218) and theSwedish Data Protection Regulation (2018:219) that enteredinto force on May 25, 2018 [50]), which refers to allowing only
patients themselves direct access to their medical records—not
someone else [49].

With a growing population of older people (>60 years) seeking
health care services, many of whom are likely to have (multiple)
chronic conditions, the demands on health and social careservices are increasing [42]. However, the time that individuals
with chronic conditions seek health and social care represents
only a fragment of their 24/7 lived experience of coping witha chronic disease. As we grow older, we often become
increasingly dependent on psychosocial and physical support
outside of formal health care services, but this is far from only
an issue for older people. Patients with cognitive or physicaldisabilities often rely on family or informal caregivers forsupport in managing their health. Parents, especially of children
with chronic or life-threatening conditions, have an instrumentalrole in their children’s care and report great benefits from ORA[35] when it is available. Having a (strong) social network andinformal caregivers (eg, family and friends), especially in timesof life-changing illness, could mean the difference between
survival and death [43]Viewpoint

Despite informal caregiving being an essential part of healthcare, it is rarely given a lot of credit. In fact, the vast majorityof caregiving is informal, and it is undertaken by family
members free of charge and with no support provided for them,

In a US study of 22,000 patients who read their notes, 1 in 5
reported finding an error, and 40% of those perceived the error
to be serious [51]. The most common errors were related todiagnoses, medical histories, medications, test results, notes on

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In order to implement the EHDS proposal, it will be essential
to streamline regulations for, and implementation of, proxyaccess across Europe. Acknowledging that different types ofproxy access exist and come with their own set of challenges
will also be important, distinguishing, for example, parental
proxy access from other forms of proxy access.

Rectifying Errors and Omissions
The Proposal
The EHDS proposal, Article 3 §7, stresses that Member Statesshall ensure that:natural persons can easily request rectification online[9]

The Research

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the wrong patient, and notes pertaining to the wrong side of thepatient’s body (left vs right). Erroneous records may contributeto diagnostic errors that are common in health care [52].
Between 1 in 20 and 1 in every 6 medical consultations resultsin missed, wrong, or delayed diagnoses [53]. Most diagnostic
errors relate to common conditions such as congenital heart
failure, pneumonia, and urinary tract infections [54]. Researchalso shows repeated, missed opportunities to detect cancer[55,56].

Estonia find errors or missing information in their PAEHR andthe action they have taken in these situations [62]. The resultsfrom these studies will help guide the further implementationof the EHDS with respect to the management of errors andmissing information.

Patients have so far had a marginal role in diagnostic processes,
as acknowledged in the US National Academy of Medicine’s
report “Improving Diagnosis in Health Care.” The report
prompts a deeper discussion about the role of patients in closing
feedback loops in care and helping to avoid mistakes that canlead to diagnostic errors, and ultimately patient harm [57].
Patient ORA is cited as a mechanism for improving diagnostic
accuracy [57] and has been described by medical safety experts
as a “transforming concept” in patient safety [58]. Emerging
research supports these conclusions [13,59,60]. Patient ORA
may help patients avoid delays and missed diagnoses byencouraging timely follow-up of recommended tests, results,
and referrals [51]. Patients with ORA who identify and report
errors could prevent clinicians from relying on incorrect datathat may lead to poor diagnostic or treatment decisions or evenlegal liability [61]. A meta-analysis of 20 ORA-related
randomized clinical trials (involving 17,387 patients) supports
the conclusion that ORA could improve patient safety [13].
Most research to date on patients’ ORA and documentation
errors has been performed in the United States with a remarkably
different medico-legal system from the European one. In thisrespect, the NORDeHEALTH research complements the existing
research and provides important evidence for the usefulness ofpatient ORA in patient safety work in contexts dominated bypublic health care provision.

Article 3, §6 of the EHDS proposal states that:

In addition, most studies focus on somatic care and exclude
mental health care. A recent NORDeHEALTH study made acomparison between patients who had received mental healthcare (the MHC group) and patients who had not (non-MHC
group), regarding their experiences of finding errors or missing
information in their online records [62]. MHC respondents(n=3131) experienced errors (MHC 1586/3131, 50.65% andnon-MHC 3311/9203, 35.98%) and omissions (MHC 1089/3131,
34.78% and non-MHC 2427/9203, 26.37%) in the EHR at ahigher rate compared with non-MHC respondents (n=9203).
The statistically significant differences between the MHC andnon-MHC groups remained when comparing a stratified
subgroup sample adjusted for age and gender [62].

Viewpoint

Patients’ Input of Their Own Data
The Proposal
Natural persons may insert their electronic healthdata into their own EHR or in that of natural persons
whose health information they can access, throughelectronic health data access services or applications
linked to these services. That information shall bemarked as inserted by the natural person or by his or
her representative [9].

The Research
Although the Nordic countries are advanced in providing ORA,
entering health data into the EHR is not widely implemented.
Swedish patients could previously comment in their EHRs [63],but this function was removed in 2022 due to technical problems
related to the initial implementation of the feature. In Finland,patients can save health data to their personal health record via
well-being applications, but the function is in limited use, only
certain applications are accepted, and the data are not yet
available to health care professionals [64]. Furthermore, patientsin both Finland and Sweden have asked for more interactivity
in their health records, such as the possibility to comment on
the notes or request corrections [4,6].
In the NORDeHEALTH project, we explore how patient input
to the EHR might become better designed to adequately meetthis function. The EHR has traditionally been available to healthcare professionals only. Patients report many positive effects
from accessing their records, yet to fully achieve the potential
benefits of digitalization, we need to further explore how EHRs
can shift from being solely a documentation tool for healthprofessionals to a tool for secure collaboration andcommunication with patients and family caregivers. Here,national patient portals and additional digital services willcomplement the future development of the EHRs into
collaborative, person-centered tools.

Viewpoint
As digitalization is about more than making electronic versionsof analog work, we investigate different ways to use the powerof digitalization, as provided in Textbox 3.

In the NORDeHEALTH patient survey [37], we explore theextent to which patients in Sweden, Norway, Finland, andTextbox 3. Different ways to incorporate patient input to the electronic health record (EHR).
•

Patient input to the EHR in narrative form, for example, patients commenting on notes or contributing with descriptions of their symptoms.

•

Patient-created structured data, for example, patient-reported outcome or experience measures—patient reported outcome measures and patientreported experience measures, and Integration of data and services from third-party applications, for example, self-tracking data, and decision
support.

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Access Control
The Proposal
Finally, EHDS proposes increased access control for patients.
Patients should be able to request that electronic health data aremade accessible to actors in the health or social security sector,
and they should also have the right to restrict such access toelectronic health data.
Natural persons shall have the right to give accessto or request a data holder from the health or social
security sector to transmit their electronic health data
to a data recipient of their choice from the health orsocial security sector, immediately, free of charge,
and without hindrance from the data holder or fromthe manufacturers of the system used by that holder[Article 3, §8] [9][...] natural persons shall have the right to restrict
access of health professionals to all or part of theirelectronic health data [Article 3, §9] [9]The Research
The Swedish Agency for Health and Care Services Analysis[65] reports that the majority of the population accepts andwants digital data about their own care and health to be used sothat it is useful, including for safer care and research. At thesame time, it is important that the data be handled securely andprotected from unauthorized access.
In the NORDeHEALTH 2022 patient survey [37], questions
related to sharing of the respondents’ records were asked, as
well as requests for unwanted record access. Among the Swedish
respondents, 4% (501/12,334) of respondents answered thatthey had experienced that someone had seen their health records
without their consent [66], a finding that requires further
analysis. Although 4% can be considered a low number, it stands
in stark contrast to the clear message from policy makers thatunauthorized access should not occur [9,50].

Hägglund et al
With the increasing possibilities for secondary use of healthdata, both by research and industry stakeholders, it will become
even more important for patients to be aware of how to manage
their health data, and consent to sharing it, in a safe way. Further
research is needed both to understand patients' incentives forand experiences of sharing their data for secondary use and to
identify interventions to increase digital health literacy regarding
secondary use specifically.

Viewpoint
Unauthorized access can reduce both patient safety and trust in
health care, but it can also erode opportunities for secondary
use of health data. Existing controls for information security
and privacy, therefore, need to be improved in line with the
EHDS proposal.

Conclusions
We argue that with the realization of the EHDS, patients’opportunities to access and control third-party access to their
EHRs are likely to change dramatically. ORA implementation
today is fragmented throughout Europe, and the EHDS proposal
aims to ensure all European citizens have equal online accessto their health data. However, we argue that in order toimplement the EHDS, we need more research evidence on the
key ORA principles we have identified in our analysis. Resultsfrom the NORDeHEALTH project provide some of that
evidence, but we have also identified important knowledge gapsthat still need further exploration. Research such as that
performed in the NORDeHEALTH project offers importantfirsthand insights and will be essential to inform the design andimplementation of ORA to meet the requirements of the EHDS.
However, further international collaboration and research, anddedicated funding, are needed to achieve a comprehensive
understanding of sociotechnical and contextual factors necessary
to consider for ensuring successful, secure, and ethicalimplementation of EHDS.

Acknowledgments
This work was supported by the Citizen and Health Data Working Group in the European Federation for Medical Informatics(CHD WG, EFMI). This work was supported by NordForsk through the funding to Nordic eHealth for Patients: Benchmarking
and Developing for the Future, NORDeHEALTH (project #100477), the Swedish Research Council for Health, Working Life
and Welfare (FORTE) through the funding to Beyond Implementation of eHealth (project #2020-01229), the Strategic ResearchCouncil at the Academy of Finland (projects #352501 and #352503), and the Norwegian Centre for E-health Research. CB was
supported by a Keane Scholar Award. The study funders played no role in the study design, data interpretation, writing of theresults, or decision to submit the manuscript for publication.

Data Availability
Data sharing is not applicable to this article as no data sets were generated or analyzed during this study.

Authors' Contributions
MH and AK prepared the initial draft. All authors participated in revising the text and approved the final manuscript.

Conflicts of Interest
None declared.

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Abbreviations
EHDS: European Health Data Space
EHR: electronic health record
NORDeHEALTH: Nordic eHealth for Patients: Benchmarking and Developing for the Future
ORA: online record access
PAEHR: patient accessible electronic health record

Edited by T de Azevedo Cardoso; submitted 17.05.23; peer-reviewed by E Meier-Diedrich, J Sippel, O Petrovskaya, Y Feng; comments
to author 06.09.23; revised version received 31.10.23; accepted 25.04.24; published 27.06.24
Please cite as:
Hägglund M, Kharko A, Bärkås A, Blease C, Cajander Å, DesRoches C, Fagerlund AJ, Hagström J, Huvila I, Hörhammer I, Kane
B, Klein GO, Kristiansen E, Moll J, Muli I, Rexhepi H, Riggare S, Ross P, Scandurra I, Simola S, Soone H, Wang B, GhorbanianZolbin M, Åhlfeldt Rose-Mharie, Kujala S, Johansen MA
A Nordic Perspective on Patient Online Record Access and the European Health Data SpaceJ Med Internet Res 2024;26:e49084
URL: https://www.jmir.org/2024/1/e49084
doi: 10.2196/49084
PMID: 38935430©Maria Hägglund, Anna Kharko, Annika Bärkås, Charlotte Blease, Åsa Cajander, Catherine DesRoches, Asbjørn Johansen
Fagerlund, Josefin Hagström, Isto Huvila, Iiris Hörhammer, Bridget Kane, Gunnar O Klein, Eli Kristiansen, Jonas Moll, Irene
Muli, Hanife Rexhepi, Sara Riggare, Peeter Ross, Isabella Scandurra, Saija Simola, Hedvig Soone, Bo Wang, Maedeh GhorbanianZolbin, Rose-Mharie Åhlfeldt, Sari Kujala, Monika Alise Johansen. Originally published in the Journal of Medical Internet
Research (https://www.jmir.org), 27.06.2024. This is an open-access article distributed under the terms of the Creative Commons
Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction
in any medium, provided the original work, first published in the Journal of Medical Internet Research (ISSN 1438-8871), isproperly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as
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