Factors influencing PAEHR development
and implementation
A descriptive comparison between Sweden and the Netherlands
Charlotte D. Cijvat
11007486 Word count: 2857
May 2018, Amsterdam
Tutor: Maria Hägglund, Karolinska Institutet Stockholm Supervisor: Ronald Cornet, Academic Medical Center Amsterdam
University of Amsterdam
2
Abstract
Background: More and more patient-accessible electronic health records (PAEHRs) and associated national policies have been set up over the past two decades. Still little is however known about the most effective strategy for developing and implementing PAEHRs. There are many stakeholders to take into account, and previous research focuses on the viewpoints of patients and healthcare professionals. Many known barriers and challenges could be solved by involving end-users in the development and implementation process. This study therefore compares challenging and facilitating factors for PAEHR development and implementation, both general and specific for end-user involvement, that were present in Sweden and the Netherlands.
Methods: A total of 14 interviews with 16 stakeholders from both countries participated in semi-structured interviews, which were analysed by means of content analysis.
Outcomes: The main barriers that are present in both countries are resistance from healthcare providers and technical barriers regarding EHR systems and suppliers.
Conclusion: Most of the major barriers and facilitators from both countries are covered in existing literature. This study however identified factors that can be seen as more practical and that would not have arisen from interviews with patients or physicians. Recommendations for policy makers include keeping the mentioned barriers in mind from the start of development, and paving the way for facilitators, mainly strict policies, learning from peer implementers, and end-user involvement, when possible. Implementers should focus on strong decision making and project management, and adapting the healthcare organisation to the PAEHR. Future research should focus on identifying more influencing factors, having decision makers and implementers review these, and connecting the influencing factors that were present to implementation success.
3
Introduction
Over the past two decades, advancements in law, technology and policy have stimulated the implementation of patient-accessible electronic health records (PAEHRs). These systems, set up by either healthcare providers or governments, allow patients to access their medical data whenever they want. PAEHRs are usually designed as a web-accessible portal, in which the user can read the EHR information and potentially download it to manage it himself in a Personal Health Record (PHR). Providing access to medical data potentially improves patient empowerment, leading to less consultations and more efficient healthcare provision, thus lowered healthcare expenditure and better health outcomes (1). Because these benefits can occur not only for an individual healthcare provider level but also for the whole healthcare system, many countries take a national approach in developing PAEHRs or policy for implementation.
Even though more and more PAEHRs have been implemented, still little is known about the most effective strategy for developing and implementing PAEHRs and associated policy. This might be due to the many human, organizational and technological factors that can complicate these processes (2). There are for example many different stakeholders affected by PAEHRs, all with different and sometimes contradictory concerns, incentives or demands (3,4). Besides, existing literature mainly focuses on individual cases and on the viewpoints of patients or healthcare professionals, instead of the people that face these factors while developing or implementing PAEHR policy (5). These studies bring forward many different factors that affect these processes, of which many can be facilitated by involving end-users, in this case patients, in the development and implementation (1,6-8). For example, patient-reported barriers for PAEHR adoption include healthcare provider acceptance, endorsement and promotion of the PAEHR, user health literacy, and perceived usability and utility (e.g. usefulness of the available information and personalisation of the PAEHR). Another study by Zuniga et al. stresses the importance of ensuring end-user satisfaction for a successful implementation. Even though involving end-users appears to be highly desirable, it can bring about a lot of challenging factors (9,10).
It is hypothesised that countries developing PAEHRs and associated policies face similar challenging and facilitating factors, both general and specific for end-user involvement, and can improve their existing policies by comparing these factors (11). However, existing research might not reflect the factors that policy developers and implementers face in reality. This study therefore aimed at describing barriers, facilitators, critical success factors and different aspects of end-user involvement in PAEHR development and implementation processes. It was decided to compare the situations in Sweden and the Netherlands, as these contexts seem to be contrasting at first sight (see Table 1 for a description of the study setting and policies). As (grey) literature does not unveil enough information about barriers and end-user involvement in the process, a qualitative approach was considered necessary. It is expected that the outcomes can help Sweden, the Netherlands and potentially other countries with similar strategies to improve their policies and strategies regarding PAEHR development and implementation.
4 Table 1: Overview of healthcare system structures, regulations concerning access to medical data and
existing PAEHR policies in Sweden and the Netherlands.
1 https://www.inera.se/globalassets/tjanster/journalen/ramverk/bilaga-1-juridiska-fragestallningar.pdf 2
https://www.rijksoverheid.nl/binaries/rijksoverheid/documenten/brochures/2017/06/01/elektronische-gegevensuitwisseling-in-de-zorg/Wet+elektronische+verwerking+van+gegevens+20170620.pdf
3 https://www.vipp-programma.nl/over-vipp/doelstellingen
4 VIPP 1 Resultatentabel meting maart 2018:
https://drive.google.com/file/d/1qe_owm3U0I2D-osz4Fw413ZlFlXDdxDw/view
5 hoeonlineisjouwziekenhuis.nl
Sweden The Netherlands
Number of
inhabitants 10 million 17 million
Healthcare system
structure (11) Tax-funded. Decentralized: regional governments, County Councils, are responsible for provision of care and may contract both public and private providers.
Mandatory private insurance. Private care providers deliver care.
Laws regarding (digital) access to medical records
All citizens aged 16 and over have a right to directly
access different types of health documentation1. Patients aged 12 and over have a right to a digital copy of all information included in the record when
the data is processed digitally (from July 2020)2.
PAEHR policy One PAEHR for all citizens: Journalen, which was developed by Uppsala County Council in several projects since 1997 (12). All County Councils agreed to implement Journalen as part of the national 1177 Healthcare Guide e-services. It collects data from different EHR systems through a Health Information Exchange (HIE). There are national guidelines, the National Regulatory Framework (NRF), but it is not mandatory to follow.
From December 2016 to December 2019, the ‘Versnellingsprogramma Informatieuitwisseling Patiënt en Professional’ (VIPP) is in operation. It aims to promote general hospitals and other specialist care institutions to provide digital access and improve medication safety. Participation is not mandatory, but a financial incentive is awarded when specific goals are met.
Choices in
implementation The first version of the NRF included both mandatory and electable paragraphs. The main decisions for County Councils were regarding displaying record entries with or without signing by the physician, and with or without a 14-day delay (13). In 2016 a new version was published with the intention to provide patients with access to all health- and dental care information by 2020.
Hospitals can choose which goals regarding patients’ access, standardized data-capture and medication verification they want to implement3.
Providing access is allowed by implementing a patient portal or an upload of EHR information into a PHR. Besides VIPP’s goals, choices can be made regarding the history of displayed data, whether information is displayed with or without delay, and potential functionalities of the portal.
Responsible
organisations Inera AB manages the 1177 e-service. It is a company owned by the Swedish regional governments. County Councils are responsible for connecting the EHR systems of the individual (private) healthcare providers to the HIE.
The Ministry of Health, Welfare and Sports, and the Dutch Hospital Association (NVZ) developed the subsidy programme. Individual hospitals carry out the implementation by making arrangements with their EHR system supplier.
State of the art As of March 2018, all County Councils have implemented Journalen. However, not all healthcare providers are connected to the HIE.
66 out of 70 non-academic hospitals are
participating in VIPP4. In December 2017, 30 out of
78 Dutch hospitals had a patient portal with access to medical data5.
5
Methods
Study settings
The study settings presented in Table 1 were used as a guide for identifying the different stakeholders. The choice was made to focus on VIPP in the Netherlands. It is important to note that this only covers general hospitals and other specialist care institutions, while Journalen can display EHR data from all levels of healthcare. We distinguish developers of national PAEHR policies and solutions from local or regional healthcare providers that implement those. In Sweden, the developers of Journalen from Uppsala County Council (UCC), the current responsible organisation Inera, and other County Councils and healthcare organisations that have implemented Journalen were approached. In the Netherlands, we interviewed decision makers of the VIPP program and experienced experts of implementing PAEHRs according to VIPP. Furthermore, we sought patient representatives of the two countries to interview.
Data collection
Respondents were acquired through convenience and snowball sampling by using personal and professional networks and contacting the organization behind VIPP. Interviews were conducted between March and May 2018, where possible via Skype or phone. All interviews with Dutch respondents were conducted in Dutch. Some Swedish respondents were reluctant to conduct the interviews in English and were offered to (iteratively) answer questions via email in Swedish. Their answers were translated into English with help of a native Swedish speaker. The remainder of the Swedish respondents participated in English.
In advance, semi-structured interview guides were developed with the following categories and respective sub-categories in mind:
End-user involvement: necessity, ideal execution, execution in reality, outcomes and consequences;
Affecting factors: perceived barriers, facilitators and critical success factors and their effects on the development and implementation process.
Questions were developed with help of the Consolidated Framework for Implementation Research (CFIR)6, which provides constructs and related questions associated with effective implementation.
Relevant CFIR questions and questions about the development and implementation of the national PAEHR policy were selected for the interview guides, which were improved iteratively after conducting the interviews.
All participants were informed about the goals and risks of the study. If applicable, audio was recorded and notes were kept. The interviews were transcribed as soon as possible using intelligent verbatim transcription. While listening to the recordings, transcripts were shortened and edited for the sake of clarity before analysis.
6
Analysis
The interviews were analysed by means of content analysis according to Taylor-Powell and Renner (14). Important passages from the edited transcripts were categorized according to the aforementioned categories and respective sub-categories. All passages were provided with a condensed meaning unit in English. Related passages and condensed meaning units were collected, compared, grouped and provided with a description.
7
Results
The sampling method yielded 16 respondents in total. See Table 2 for a description of the respondents’ roles.
Table 2: Overview of interview respondents.
Sweden
Interview Respondent Organization Role related to PAEHRs
1 1 Inera Head of Journalen
2 2 Uppsala County Council Project manager/ coordinator in several projects of Journalen development and implementation
3 3 Uppsala County Council Medical expert involved in in several projects of Journalen development and implementation
4 4 County Council 2 Project leader of Journalen implementation 5 5 County Council 2
Private caregiver Member of steering committee for Journalen implementation Chief medical informatics officer 6 6, 7, 8 County Council 2 Participant in central work of Journalen implementation 7 9 County Council 3 Project leader for healthcare IT implementation
8 10 University Researcher
The Netherlands
Interview Resp. Organization Role related to PAEHRs 9 11 IT advising company
Hospital 1
Senior advisor Project leader 10 12 Hospital 2 Project manager 11 13 Hospital 3 Project leader/ advisor 12 14 Hospital 4 Project leader
13 15 VIPP program
Dutch Hospital Organisation Project leader Senior policy advisor 14 16 Patient Federation Policy advisor
Table 3 represents the main barriers, facilitators and critical success that play a role in developing and implementing national PAEHR policy as mentioned by the respondents from both countries. The main barriers have been resistance from healthcare professionals (HCPs) on both levels in Sweden and on the implementation level in the Netherlands. Implementers from both countries face technical barriers when implementing PAEHRs. In Sweden these are regarding connecting to the HIE. Dutch implementers are dependent on their IT suppliers for implementing a successful PAEHR and achieving VIPP.
The different aspects of end-user involvement in PAEHR policy development and implementation in Sweden and the Netherlands have been displayed in Table 4. In Sweden, end-users’ wishes and preferences regarding digital access to the EHR have been revealed during early deployment of Journalen. County Councils implementing Journalen also attempt to do so, but use fewer means to discover the preferences and have fewer decisions to involve these in. In the Netherlands, end-user involvement mainly takes place at the implementation level, even though hospitals face multiple barriers when doing so. Little to no end-user involvement was carried out when developing VIPP.
8 Table 3: Barriers, facilitators and critical success factors in both national PAEHR policy development
(N) and local implementation (I) as perceived by interview respondents from Sweden and the Netherlands. Barriers are printed in normal text, facilitators are highlighted green and critical factors
are underlined.
Category Sweden The Netherlands
Systems & suppliers
N: Authentication methods I: Technical limitations of systems
I: High costs for connecting small EHR systems I: Testing prior to implementation necessary I: Difficult requisites for connecting to the HIE
N: Difficulties in measuring hospitals’ progress I: Limitations in choice and possibilities of systems I: Large dependency on software suppliers I: Alignment of systems necessary
I: Systems and suppliers determine achievement of VIPP N: Use of national HIE created by other project
I: Use of national protocols and standards I: Reusable contracts & protocols
I: Large EHR system suppliers address security issues I: Portal functionalities existed outside of healthcare I: Think about future development from the start
Social & organisational
N, I: Resistance and fears from physicians
I: Changing HCPs’ routines, workflows and attitudes I: Physicians’ reluctancy, resistance and fears I: Changing HCPs’ political status and workflow I: Effects on hospitals’ culture and work processes I: Fears for patients’ confusion, questions, fears I: Gradual implementation necessary to keep physicians on board
I: Involve HCPs’ perspective in decision making I: Communicate with stakeholders
I: Gradual implementation
I: Patients can change physicians’ behaviour if no one else will
I: Ambassadors in healthcare organisations
I: Involve both patients and professionals
I: NVZ published an analysis of impact on hospitals’ work processes
Resources
N: Financing the development of Journalen N: Too little time to take precautions for physicians’ resistance
I: High costs for connecting to the HIE
I: Time-consuming decision making due to flexibility in NRF
I: VIPP requires a lot of human work I: Human work leads to high costs I: Too little time to make VIPP’s deadlines
I: Learn from peers’ implementation processes I: Previous experience and knowledge
Policies, laws & regulations
N: Include electable rules to make progress
N: Electable rules caused confusion and inequality for users
N: Journalen was against the law
N: Define goals adequately for desired outcomes N: Estimating reasonable usage percentages N: Slow development of other national programs I: Some VIPP goals are difficult to accomplish I: Strict privacy regulations not in patients’ interests I: Strict security rules impede user-friendliness N: Stricter policy
I: Involve HCPs’ perspective in decision making
Governance
I: Gradual approach necessary to get all stakeholders on board
I: Flexibility in choosing EHR systems in some counties but only one supported
I: Gradual implementation to keep physicians on board I: VIPP has no or low priority
I: Cooperation between stakeholders necessary N: Decision making on a political level
I: Implementing gradually
I: Dare to try despite fears from professionals I: Central program management
I: Involve both patients and professionals I: Strong decision makers
I: Involve different stakeholder: IT and Communication departments, IT suppliers
Effects of barriers
N, I: Delays
N, I: Restrictions on information that is displayed
N, I: Delays
I: High costs for implementing systems and VIPP I: Too little time to create support from staff I: Low user-friendliness and usage
9 Table 4: Different aspects of end-user involvement in Sweden and the Netherlands as mentioned by interview respondents of both national PAEHR policy development (N) and local implementation (I).
Category Sweden The Netherlands
Importance or necessity
I: Leads to better care provision I: Added value for patients and their treatment I: To accomplish VIPP
National policy’s
intended benefits N: Improve patient empowerment N: Improve efficiency of medical services N: Digital "self-service" for patients
N: Improve medication safety
N: Provide information access for patients End-user centredness
of national policy N: NRF version 1 and 2 have the same goals N: Access needs to be improved for persons aged 13-15
I: NRF version 2 is more transparent and supporting to patients than version 1
N: VIPP is developed for patients I: VIPP is developed for professionals
I: Patients will benefit from the information that is displayed
Means of end-user involvement
N: Workshops with patients and caregivers N, I: User surveys
N, I: Collecting feedback I: Patient Advisory Board I: Research
I: Assumptions from healthcare professionals
I: (Online) panels, focus groups I: User surveys
I: Collecting feedback I: Client council members I: Research & publications Gained understanding
and insights
N: Users want direct access to signed and unsigned notes, preferably in the professionals’ language
N: Users want to make their own decision about viewing the information with or without delay N: Less negative outcomes for patients than expected
I: Wishes, needs, complaints and questions I: Insights into desired future functionalities I: Debates between client council members and medical staff, which sometimes lead to more support from staff for the patients’ wishes Challenges N, I: Make compromises between patients’ and
healthcare professionals’ wishes I: Few decisions to involve end-users in
I: Not possible to combine with VIPP and its technical focus
I: Find enough users that are willing and able to participate, have the right mindset and are representative for the hospital’s patient population
I: Did not get enough feedback from patients Lack of resources I: End-users had too little knowledge or
experience to involve in the development process
I: Not enough time or other resources for end-user involvement
I: Technically not possible to meet the patients’ wishes and requirements
I: Too many different wishes and requirements to take into account
10
Discussion
Principal findings
Swedish and Dutch developers and implementers of national PAEHR policy have reported on many different barriers, facilitators, critical success factors and aspects of end-user involvement. These outcomes are compared and linked to existing literature in order to interpret them and give recommendations.
Barriers, facilitators and critical success factors
The main barrier that both countries face is resistance from HCPs, which is reported in many other studies (1,4,15-17). Even though the resistance presents itself on different levels in Sweden and the Netherlands, the approaches for dealing with it are similar. Both countries felt the need to involve the professionals’ viewpoint in decision making, which has been recommended previously for Journalen in order to facilitate adoption by professionals. Even if this compromised the end-users’ preferences, it was a necessary step to make progress. Multiple Dutch stakeholders perceive involving both the patient and the professional perspective as a critical success factor, because it is not likely that professionals will be enthusiastic about and use a tool that is created for just patients, and vice versa. The importance of involving end-users’ (6,7,16,18-20) and healthcare professionals’ perspectives (17,21) in the processes are supported by many studies. Besides stakeholder involvement, the necessity for strong decision making and a gradual approach in implementing was expressed in both countries. Strong leadership is recognized as an important factor for implementation success (16), while a gradual implementation strategy can be seen as a way of reducing the HCPs’ resistance, for instance by implementing functionalities or types of information one at a time. However, the gradual implementation was viewed as both a barrier and facilitator in Sweden, but the delays it causes in the implementation process makes it only a barrier for Dutch respondents. Another potential solution to HCP resistance that was mentioned in both countries was enforcing stricter rules or regulations regarding the PAEHR. In Sweden, this could have reduced the inequality between counties and let Journalen meet the citizens’ preferences better. Even though providing digital access is mandatory in the Netherlands from 2020, stricter regulations about the way of giving access could have saved time and money that is now needed for convincing HCPs.
Even though technical barriers are reported less often in literature (22,23), they are present on the implementation level in both countries. In the Netherlands, hospitals are dependent on their software suppliers for implementing a successful PAEHR and achieving VIPP. Swedish County Councils are restricted in connecting EHR systems to the HIE due to strict requirements and high costs. Besides, it is not always possible to show all types of information that are desired due to technical limitations of the EHR systems that are connected to the HIE. Swedish implementers however mentioned that sometimes, reuse of protocols and contracts from other County Councils or healthcare providers is possible, which facilitates the connection. County Councils also have the possibility to take note of social aspects of implementing Journalen in other counties. Dutch hospitals sometimes do the latter as well, whereas technical cooperation appears limited. Even though the majority of Dutch hospitals use either of two large EHR and corresponding portal systems, the implementation of VIPP in practice is dependent on more factors such as the pharmacy’s medication system. Learning from peers’ implementations seems to be very valuable, but has not been mentioned in literature as a factor playing a role in the implementation process. Surprisingly, concerns about privacy, security and authentication are recurrent barriers in literature (1,6,15,16,20), while this wasn’t the case in the
11 interviews. The only barriers related to this domain were about the existing regulations or solutions being too strict and therefore impeding user-friendliness and PAEHR usage.
End-user involvement
The most prominent difference in end-user involvement between the two countries is not the reasons for or means of doing it, rather the level on which it is performed. The wishes and preferences of Swedish citizens have been studied and known from the beginning of Journalen’s development. Until the new version of the NRF came into place, these preferences had however not been taken into account. This is due to the compromises that had to be made between users’ and healthcare professionals’ preferences in the development of both the national NRF and regional adaptations of the NRF. The new NRF that was presented in 2016 will hopefully lead County Councils to display all information without delay by 2020, in accordance with the users’ preferences. Little to no end-user involvement was carried out when developing the Dutch national PAEHR policy, VIPP. Individual hospitals however make large efforts in involving users in the development and implementation of their patient portals and even perceive this as a prerequisite for accomplishing VIPP’s goals. When doing this, hospitals face different barriers that can be roughly divided into two categories. The first is related to finding the right amount of users that are not just willing to participate, but also have the right mindset and can together represent the hospital’s patient population. The second encompasses barriers that are related to the project itself. These include not having enough time or other resources for end-user involvement, or not being able to meet the patients’ wishes and requirements from either a technical perspective or because there are just too many different wishes and requirements to take into account. Another barrier that cannot be categorized in the previous two groups but that is unforeseen enough to mention is VIPP itself. The program was set up as an incentive to implement (valuable) PAEHRs, but hospitals report that its technical focus leaves no space for end-user involvement.
Strengths and weaknesses
The strength of this study is that policy makers and implementers were chosen as respondents, while previous studies have mainly focused on the viewpoints of patients and/or healthcare professionals. Weaknesses include the sampling method and conductance of the interviews. Even though attempts were made to interview as many respondents as possible, respondents were sampled though convenience sampling and it was not investigated how well the implementers represented the whole implementation level in both countries. Besides, the respondents from the implementation levels from both countries were implementing PAEHRs in different settings within healthcare. Interview respondents that implement VIPP all represent hospitals, while Swedish County Councils that implement Journalen are responsible for all levels of healthcare. Some Swedish respondents were offered to answer questions via email in Swedish, even though the researcher was not proficient in this language. This lead to less detailed questions and answers than in other interviews, and might have biased results. Because obtaining Swedish respondents was already difficult, providing this opportunity was deemed necessary to get responses in the first place.
Conclusion and recommendations
Most of the major barriers and facilitators that have been mentioned by the PAEHR policy developers and implementers are covered in existing literature, even though previous research generally looked at the viewpoints of patients or healthcare professionals. Our research identified factors that can be
12 seen as more practical and that would not have arisen from interviews with patients or physicians. These include barriers from IT systems and suppliers of these systems, and the facilitating effect of learning from peers’ implementation experiences. On the contrary, previous literature often mentions concerns about privacy and security as a barrier, but this has not been reported by the respondents in this way. We therefore conclude that the factors that affect the PAEHR development and implementation process can differ from the factors that are reported in literature.
We would recommend these actors to keep the factors mentioned in this paper in mind when developing and implementing the policy. Policy developers can keep the barriers in mind and pave the way for the mentioned facilitators. More specifically, they can consider attaching incentives or penalties to the policy or capturing it in law in order to save resources needed to convince healthcare professionals during implementation. Besides, thoughts can be put into facilitating peer learning among implementers, and leaving space for end-user involvement. Implementers should mainly focus on strong decision making and project management, and adapting the organisation to PAEHR to prevent worrying patients reading their EHR, for example by installing a helpdesk for questions about lab results.
It is important to keep in mind that this study was only a preliminary study to identify the differences between Sweden and the Netherlands and the results are based on only one interview per respondent. The final list of barriers, facilitators and critical success factors has not been reviewed by the respondents. More efforts should be made to discover more affecting factors and to have PAEHR policy developers and implementers review these. The final list of affecting factors could be compared with existing frameworks to see if and how they fit in, or that a new framework has to be developed. Besides, it would be valuable to evaluate how exactly the factors have affected the PAEHR success in both countries. Unfortunately, science has not yet agreed on how to measure PAEHR success yet (5).
13
Acknowledgements
I would like to express my thanks to my tutor, Maria Hägglund, and supervisor, Ronald Cornet, for offering me the wonderful opportunity of fulfilling my internship in Stockholm, and for guiding and supporting me along the way. I would also like to thank the organisation behind VIPP for providing me with the opportunity to contact potential respondents. Lastly, I thank all interview respondents for their participation and valuable input.
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