Tethered patient portals and influencing use factors from the patient perspective

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Tethered patient portals and

influencing use factors from the patient

perspective

Master Thesis

Master thesis Medical Informatics Frank Horenberg, BSc

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Project information

Author

Frank Horenberg, BSc

Faculty of Medicine, Academic Medical Centre - University of Amsterdam Meibergdreef 9, 1105 AZ Amsterdam

Student number: 10422900 f.horenberg@amc.uva.nl

Mentor

Rick Goud, PhD

ZIVVER - Director & Co-founder rick.goud@zivver.com

Tutor

Dr. Danielle Sent - Assistant professor

Department of Medical Informatics, Academic Medical Centre d.sent@amc.uva.nl

Location

ZIVVER Overschiestraat 186-J 1062 XK Amsterdam

Period

November 2016 – September 2017

Funding Source & conflict of interest

The author of this study is a research intern who performed his final master’s internship medical informatics (University of Amsterdam, Amsterdam) at ZIVVER. Funding was provided by ZIVVER, which is a commercial party focused on secured online communication services and is exploring markets to expand. ZIVVER only provided financial means to support this research and assisted the author when guidance was required. An independent researcher from the department of medical informatics (Academic Medical Center, Amsterdam) provided guidance during the project to assure the scientific component of this project. No further conflict of interests was reported by those involved.

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Preface and acknowledgements

I became acquainted with medical informatics in 2011 and over the years I developed many interests in topics such as; registration and standardization, programming, process modelling, strategic information management, innovations, technology and many more. After three years, during my bachelor thesis, the technology and innovation aspect known as eHealth and the practical solutions I introduced myself to eHealth. I became acquainted with teleconsultation and learned about the groundbreaking potentials to change the healthcare delivery system with new innovations.

However, during my master medical informatics the other side of these innovations became apparent, namely the many challenges to actually involve the patient in his own care. Terms as shared decision making and patient centered care were mentioned more and more, but one crucial aspect was missed every time. Namely simply informing the patient about his own health. I started investigating patient portals and discovered the simple practical obstacles which prevent patients to access their health information at home such as interoperability and secure delivery methods. I wondered how these obstacles could be addressed.

At the same time, I met Rick Goud and the newly found company ZIVVER which focused on secure messaging, potentially addressing the issues to digitally transfer information to the patient. Rick helped me to propose a project plan for my master’s thesis about patient portals to further

investigate the advantages of portals and to help accelerate the adoption. This thesis could provide you guidance to avoid pitfalls and to improve the adoption rate of a patient portal in your

organization.

I would like to thank Rick Goud and Danielle Sent, my supervisors, for their support in this project. Rick did not only support me during my thesis but also gave me enough freedom to experiment and pave my own path during the project and at ZIVVER. The pleasant collaboration with Danielle helped me to think critically about my decisions and supported me to fine-tune the used methods. Finally, I would like to express my gratitude to all organizations, ZIVVER employees, family and friends who helped during this project.

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Summary

Patient portals are systems which enable patients to view their own (hospital) medical records via the internet, irrespective of time and place, enabling patient engagement and empowerment. The benefits of having access to these portals are proven, but the actual usage of patient portals is still limited. The main goal of this research is to identify factors which influence patient portal usage in order to find out why patients do (not) want to use portals and which factors are deemed as more important. Using these results, recommendations can be made to stakeholders, regarding the development, communication and usage, to accelerate the adoption rate.

A systematic literature review was conducted to identify, barriers, facilitators and preconditions to provide an overview of factors which contribute to patient portal usage. The OVID database was searched using a predefined search strategy. After screening, 38 articles were included, identifying 42 individual factors. These factors were categorized into nine clusters. Six clusters focus on the patient perspective such as: (1) Social climate, (2) Skills/personal abilities, (3) Usefulness/value, (4) Environmental factors, (5) Ease of use, (6) Security/privacy. Using the literature we were unable to provide enough evidence to prioritize the factors. Further research was necessary to quantify which factors are valued more by respondents.

To quantify the importance of the identified factors for portal usage, we decided to conduct a conjoint analysis questionnaire. In a conjoint analysis different factors are combined into a set, resulting different configurations of factors. In sets of two configurations, study respondents are subsequently asked for different sets, which configuration of factors they prefer. One can

statistically determine which individual factors are favored over the other, thus providing insight in the importance of the different factors on portal usage. Experts and literature were consulted to generate content for the conjoint analysis questionnaire. Based on this, seven factors from the literature review were included into the questions, namely; cross-platform software (on what platform should the portal be usable), registration and login process (is there any preference on logging in with username and password, with 2-factor authentication, or via DigiD), interoperability (should information be exportable to another system), publication of data (should the data be available immediately, after the consult with the doctor, or is delay acceptable),

completeness/accessibility (is a summary satisfactory, of should all details be accessible) and need for engagement (is a ‘view-only’ portal sufficient, or should it contain possibilities for interaction with the care provider). Using an orthogonal design a conjoint analysis questionnaire was

generated and additional questions were added to measure background variables. To improve the reliability of the questionnaire, a validation took place by performing six cognitive interviews. During these interviews, eight unique problems were identified. All issues were addressed by changing several formulations and the visual design.

The questionnaire was distributed via multiple methods, yielding a total of 1.018 respondents. The average age of the respondents was 60, 62% female, 70% with previous experience with a patient portal. A generic analysis was performed and several subgroups were identified, such as gender, age, education, and previous experience with portals. Key results show that respondents prefer to use a portal via a computer and are indifferent which login method is used. Respondents prefer a patient portal with information from multiple providers, instead of a different portal for a different provider, like it is usually. They do not want to manually export/import the information from different information sources, but have no need to export data themselves. Respondents prefer a portal with professional summaries where jargon is avoided. Direct publication of new information or waiting until this has been discussed with the provider is equally preferred over publication with a delay. Patient business tasks such as asking questions and doing eConsultations was indicated as most important feature of a patient portal. On some domains respondent’s preferences differ between subgroups. E.g. younger respondents liked to have more detailed information in their portals than older patients.

Although the questionnaire was constructed with care, only seven factors were included in this research and only validated amongst Dutch respondents. Future research should therefore test the other factors amongst more respondent groups in order to gain a full understanding of portal use factors. Additionally, results must be placed in context by performing qualitative research. Results from this study can be used by stakeholders to facilitate patient portal implementations in the Netherlands in order to accelerate the adoption rate.

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Samenvatting (in Dutch)

Patiëntenportalen zijn systemen die patiënten in staat stellen hun eigen medische gegevens in te zien, aan te vullen en eventueel te corrigeren. Op deze wijze zijn patiënten in staat om beter betrokken te worden met hun eigen zorg. De voordelen van het gebruik van patiëntenportalen zijn reeds bewezen, maar het gebruik blijft echter achter. In dit onderzoek wordt onderzocht welke factoren invloed hebben op het gebruik van patiëntenportalen. Hiermee kan worden bepaald waarom patiënten de portalen wel of niet gebruiken en welke gebruiksfactoren belangrijk worden geacht door patiënten. Met de resultaten van dit onderzoek kunnen aanbevelingen worden gedaan om de ontwikkeling en acceptatie van patiëntenportalen te versnellen.

Een systematische literatuuronderzoek is uitgevoerd om reeds bekende factoren vast te stellen die invloed hebben op het gebruik van patiëntenportalen. De OVID database is doorzocht met een vooraf gespecificeerde zoekopdracht. Dit resulteerde in 38 geïncludeerde artikelen, waarbij 42 unieke factoren werden geïdentificeerd. Deze factoren zijn gecategoriseerd in negen groepen. Zes groepen leggen de nadruk op de patiënt. Dit zijn (1) Sociaal klimaat, (2) Vaardigheden, (3) Bruikbaarheid/waarde, (4) Omgevingsfactoren, (5) Gebruiksgemak en (6) Beveiliging/privacy. Uit het literatuuronderzoek kon geen volgorde van belangrijkheid van factoren worden vastgesteld. Verder kwantitatief onderzoek was nodig om de geïdentificeerde factoren te kunnen prioriteren. Om de resultaten te kunnen kwantificeren is een conjoint analyse, een speciaal type vragenlijst, ontwikkeld. Experts en additionele literatuur zijn geraadpleegd om de input van de conjoint analyse vast te stellen. Uit het eerdere literatuuronderzoek zijn zeven factoren in de vragenlijst opgenomen, namelijk; cross-platform software, registratie en inloggen, interoperabiliteit, publicatie van gegevens, volledigheid/toegankelijkheid en betrokkenheid. Met behulp van een orthogonaal ontwerp is een vragenlijst ontwikkeld en additionele vragen werden toegevoegd om achtergrond variabelen te meten. Om de betrouwbaarheid van de vragenlijst te valideren is de vragenlijst middels zes cognitieve interviews gevalideerd. Tijdens deze interviews zijn acht unieke problemen geïdentificeerd. Alle problemen zijn opgelost door formuleringen en het visuele ontwerp aan te passen.

Als laatste is de vragenlijst via diverse kanalen uitgezet met als resultaat 1.018 bruikbare respondenten. Een generieke analyse is uitgevoerd en tevens werden diverse subgroepen

geïdentificeerd. Resultaten van de generieke analyse geven aan dat respondenten voorkeur geven aan gebruik van een portal op een desktop/laptop. Men heeft geen voorkeur voor een inlog methode. Respondenten geven aan informatie te willen zien van diverse zorgverleners en de informatie kan in de vorm van samenvattingen in begrijpbare taal, dus geen jargon. Wanneer deze informatie beschikbaar wordt gesteld, voor of na bespreking met zorgverlener, wordt geen

voorkeur aangegeven. Interactie met de zorgverlener via het portaal zoals het stellen van vragen, teleconsultatie, herhalingsrecepten enz. wordt het meest gewaardeerd door respondenten. Binnen de diverse subgroepen is een variërend beeld te zien met enkele nuance verschillen.

Hoewel de vragenlijst met zorg is samengesteld, konden slechts zeven factoren worden

gevalideerd voor de Nederlandse setting. Door deze beperking geeft dit onderzoek slecht een klein deel weer van de vele gebruiksfactoren. Vervolgonderzoek moet uitwijzen wat de invloed van de andere factoren is op het gebruik van patiëntenportalen. Daarnaast moeten onderliggende beweegredenen verder worden verklaard middels kwalitatief onderzoek. Resultaten van dit onderzoek kunnen gebruikt worden om de ontwikkeling en acceptatie van patiëntenportalen in Nederland te versnellen.

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Chapter 1: Introduction

Nowadays, we live in an information driven world were decisions can be made based on verifiable data and information about symptoms, treatments, side-effects, and many other health topics are available and used by patients. This information is used by patients who want to be involved in managing their own health [1][2]. For example, the eHealth monitor 2015 reported almost half of all patients (40 - 46%) are interested in viewing their medical data from the medical specialist, general practitioner, physiotherapist, and GGZ-caregiver [3]. Informing patients enables them to be empowered and allows patients to be involved in the decision-making process (shared decision making), enabling providers to take personal preferences into account [4], [5]. During or before consultations, tools can help empower and engage patients, for example by utilizing online decision tools or risks assessments. During consultation, providers can discuss patient health information such as laboratory results, drug information and more during consultations with the patient [6]. However, a precondition to effectively involve the patient in the decision-making process is a properly informed patient.

With the rise of the Internet and search engines on the World Wide Web, health information suddenly became accessible to a large number of patients and is increasingly being used by a large number of patients. In 2010, 75% of the queried respondents in the Netherlands searched at least once for health-related information, which is an increase of 33% compared to an earlier survey from 2000 [7]. While patients increasingly search for information, health information from unreliable sources remains a problem since this could negatively influence the decision-making process between provider and patient [8][9][10]. Additionally, a tailor-made decision-making approach is needed since every patient wants to be involved and informed in a different manner [2][11]. Healthcare providers should therefore provide trustworthy information sources and involve patients with an individual personal approach, tailor-made to the patient needs [12]. However, patients also want to be fully empowered outside the healthcare setting, for example at home, in a manner regardless of time and place. In the healthcare setting patients can be

informed during or before a consultations, but outside the healthcare setting other tools are required to gain insight in their own health information [13]. In order to inform the patient outside the healthcare setting ICT solutions can be used to support this need. Such tools are often referred to as “eHealth” which importance and potentials have grown over the years.

The importance of eHealth is also endorsed by the Dutch government, when in 2014 the Dutch Minister of Health Welfare and Sport (VWS) sent a letter to the parliament addressing the urge for innovation in healthcare by defining three goals for eHealth. These goals are all related to care improvement in the upcoming five years and to increase the patient involvement outside the clinical setting [14]. One of these goals describe that within five years, 80% of the chronically ill patients should have direct access to certain parts of their medical data, such as: drug

information, vital signs, and laboratory results. Optionally, this data can be accessed using

(mobile) applications. Initiatives were started to achieve this goal and in February 2016 the Dutch Hospital Association (NVZ) released their strategy document where they envisioned increased patient involvement outside the clinical setting by combining the concept of “patient as a partner” and “ICT in care” [15]. As a result, the “Acceleration Program Information Exchange Patient & Professional (VIPP)” project was initiated in October 2016, with the primary goal to provide patients with a download of their medical information or provide an online environment to view their data [16].

The definition of an online environment can be anything. A practical example of such an online environment is a patient portal, were patients can access their health information, sometimes even interact with the information. Portals can therefore be utilized to satisfy the patient’s need to be engaged outside a healthcare setting. Different portal types exist on the market (see Appendix A) each with different functionalities. One type of portal is the tethered patient portal. This type of portal is used by both patients and providers and is now being implemented increasingly in the Netherlands [17]. A tethered patient portal is “tethered” to a healthcare organization and is often an application build on the existing Electronic health record (EHR) infrastructure [18]. In principle, the healthcare organization manages the portal and decides which information can be accessed and/or interacted by the patient. Most of tethered patient portals hold medical information which is also present in the EHR such as clinical notes, images, and laboratory results. Many different portal products exist in the market resulting in a heterogeneous landscape were many healthcare

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9 patients, the adoption and implementation rate of portals in the Netherlands is low due to several obstacles.

First, currently inconclusive evidence is available about the effectiveness of patient portals [19]. Most studies find no or low benefits because often only a low percentage of patients actually use the portal. This finding is also consistent in the Dutch setting were 15-20% of the physicians state that patients have possibilities to electronically access their medical information, but only 6% of the patients are aware of this possibility [20]. Additionally, more than 66% of the patients do not even know if online access to their medical data is possible [20]. Although patients want view their information, many patients are not even aware of the existence of portals. This finding indicates a discrepancy between the awareness of patient portals and the availability.

Another problem is the heterogenic market which in terms results in new obstacles such as interoperability problems. In 2015, Nictiz performed a market-scan and identified 34 implemented patient portals at several care organizations. Each portal differed in their functionalities, whereas some only provided access to basic health information such as medications and allergies list, others also provided access to the medical data such as summaries of consultations, lab values and the ability for eConsultations [17]. Because there is no clear vision on portal functionalities many different portals exist in the market [17]. Because of the large variety of portals, exchange of information between the portals becomes complicated problem.

Low patient awareness and interoperability problems are just one of the few obstacles which hinder the adoption of portals, despite availability of several portals. Goldzweig et al reviewed nineteen portals and reported high patient satisfaction under users. Acceptance should thus not be the problem [19]. However, it remains unclear why patients do not (want to) use patient portals. Possible influencing factors may be usability issues contributing to the low adoption rate, but this does not justify the issue entirely [19]. It is likely more factors on the patient level contribute to not (wanting to) use a patient portal. Literature does not provide a clear overview of these factors. In this research this problem was addressed. To state it simply: Which factors could potentially influence a patient in (not) using a patient portal.

1.1 Objective

The main goal of this research is to identify factors which influence tethered patient portal usage. These portals are utilized outside the clinical setting. The factors are identified from the patient respect to the provider and healthcare organization. These factors can be classified as facilitators, which promote the usage of patient portals and barriers/preconditions which hinder the adoption and usage of patient portals. Additionally, factors are prioritized by quantifying the results based on their importance and preferred implementations.

Based on the quantification, recommendations will be made for portal developers, policymakers and (healthcare) organizations indicating which factors (and possible implementations) should be addressed first to accelerate patient portal adoption.

This paper is organized as follows;

We start off by describing an international literature review to identify the usage factors. Using the results from the literature an overview can be created to identify which factors influence portal usage from the patient perspective but also from the provider and organization perspective on an international level. This overview is given in Chapter 2.

Next, the found factors are prioritized and quantified based on their importance to the measure patient preferences concerning portal implementations. This step is addressed in Chapters 3 and 4. Chapter 3 provides a theoretical background of a conjoint analysis and methods to validate

questionnaires. The actual construction and validation of the questionnaire is discussed in Chapter4.

Finally, Chapters 5 and 6 will provide recommendations concerning portal usage factors to

accelerate the adoption rate. Recommendations will discuss which factors and implementations are deemed as more important by patients. Chapter 6 will discuss limitations, implications for

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1.2 Bibliography

[1] S. M. Auerbach, “Do patients want control over their own health care? A review of measures, findings, and research issues,” J. Health Psychol., vol. 6, no. 2, pp. 191–203, 2001.

[2] H. Bastiaens, P. Van Royen, D. R. Pavlic, V. Raposo, and R. Baker, “Older people’s preferences for involvement in their own care: A qualitative study in primary health care in 11 European countries,”

Patient Educ. Couns., vol. 68, no. 1, pp. 33–42, 2007.

[3] J. Krijgsman, J. Peeters, A. Burghouts, A. Brabers, J. De Jong, T. Moll, R. Friele, and L. Van Gennip,

eHealth-monitor 2015: Tussen vonk en vlam. 2015.

[4] R. M. Epstein and R. L. Street, “The value of patient-centered care,” Patient Educ. Couns., vol. 68, no. 2, pp. 179–185, 2007.

[5] J. Rickert, “Patient-Centered Care: What it means and how to get there,” 2012.

[6] A. C.A., M. D., S. R.L., and S. A.K., “Tools to promote shared decision making in serious illness: A systematic review,” JAMA Intern. Med., vol. 175, no. 7, pp. 1213–1221, 2015.

[7] A. Brabers, M. Reitsma-Van Rooijen, and J. De Jong, “Gebruik van internet voor gezondheidsinformatie,” Huisarts Wet., vol. 55, no. 8, p. 359, 2012.

[8] Á. Mendes, L. Abreu, M. R. Vilar-Correia, and J. Borlido-Santos, “‘That Should Be Left to Doctors, That’s What They are There For!’ Exploring the Reflexivity and Trust of Young Adults When Seeking Health Information,” Health Commun., no. August, pp. 1–6, 2016.

[9] M. Y. Chang, J. W. Kim, and C. S. Rhee, “The quality of health information on allergic rhinitis, rhinitis, and sinusitis available on the internet,” Allergy, Asthma Immunol. Res., vol. 7, no. 2, pp. 141–147, 2014.

[10] A. Flanagin, B. Chi-lum, J. White, R. L. Kennett, C. D. Deangelis, and R. a Musacchio, “Guidelines for Medical and Health Information Sites on the Internet,” 2012.

[11] A. Dey, “Consumer health informatics: an overview of patient perspectives on health information needs,” HIM J., vol. 33, no. 4, pp. 121–126, 2004.

[12] S. Vahdat, L. Hamzehgardeshi, S. Hessam, and Z. Hamzehgardeshi, “Patient involvement in health care decision making: a review.,” Iran. Red Crescent Med. J., vol. 16, no. 1, 2014.

[13] M. LoPresti, G. Appelboom, O. Bruyère, J.-Y. Reginster, E. Klug, and E. S. Connolly, “Patient

engagement in clinical research through mobile technology,” Clin. Pract., vol. 11, no. 6, pp. 549–551, 2014.

[14] E. Schippers and M. van Rijn, “Brief aan tweede kamer: eHealth en zorverbetering,” Minist. van

Volksgezond. Welz. en Sport, no. 78, pp. 2012–2013, 2014.

[15] N. vereniging van Ziekenhuizen, “Zorg voor 2020,” Den Haag, 2016.

[16] N. vereniging van ziekenhuizen (NVZ), “[unpublished work] Versnellingsprogramma Informatie- uitwisseling Patient en Professional VIPP,” 2016.

[17] N. Beekers and J. Krijgsman, “Patiëntportalen: hoe staat de markt ervoor,” 2015.

[18] C. health care Foundation, “Definitions: Personal Health Record versus Patient Portal.” [Online]. Available: http://www.chcf.org/patient-portals/definitions. [Accessed: 28-Nov-2016].

[19] Goldzweig L and O. G, “Annals of Internal Medicine Review Electronic Patient Portals: Evidence on Health Outcomes, Satisfaction, Efficiency, and Attitudes,” vol. 159, no. 10, 2016.

[20] J. Krijgsman, I. Swinkels, B. Lettow van, de J. Jong, K. Out, R. Friele, and L. Gennip van,

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Chapter 2: Literature review

To improve patient engagement in care, a transition toward patient-centered care was started [1]. The World Health Organization (WHO) defined people centered care as “Integrated

people-centered health services means putting the comprehensive needs of people and communities, not only diseases, at the center of health systems, and empowering people to have a more active role in their own health” [2]. This engagement resulted in better patient health outcomes and to further increase the engagement level, information technologies such as patient portals can support both the patient and provider [3].

An example of using technology to increase patient engagement, is the HITECH act which was adopted by the United States in 2009 with the primary goal to stimulate the adoption of electronic health care records and to demonstrate “meaningful use” using HER’s. A mandatory criterion of this act was to improve patient engagement by implementing patient portals which enables patients to view, download, and upload medical information into an online environment. To achieve a minimal adoption rate of 5% much research has been performed in the United States to investigate which factors influence the usage of patient portals from both the patient and provider perspective. Outcomes of these studies were used to identify and address potential barriers which could hinder the implementation of patient portals.

While patient portals are also implemented in the Netherlands, portal usage remains behind since only 6% of the patients know that they can access their information through an online

environment [4]. While the benefits patient portals are proven, it is important to accelerate the portal adoption rate in the Netherlands. With the knowledge of previous literature and research which has been performed in context of the HITECH act we can list an overview of factors which influence the usage of patient portal. These results can be put into context since as early as 2009 patient portal barriers were identified and in 2011 an exploratory study was performed to identify these barriers for the Dutch setting [5], [6].

In this chapter, we will identify factors cq preconditions based on (inter)national literature to provide an overview of factors which contribute to tethered patient portal usage. We will create an overview of success factors cq preconditions which are essential for a patient portals on three different levels; the patient, healthcare professional and healthcare organization. Additionally, a prioritization is given to identify which factors cq preconditions are deemed as (more) important.

2.1 Methods

Based upon an informal study protocol a literature search was performed. This protocol includes the keywords, the search strategy, consulted data sources, study selection criteria and quality assessment methods. This protocol was peer-reviewed and validated by two researchers and one clinical librarian.

Data sources and search strategy

Two independent searches were conducted in two databases: Ovid and the Cochrane library. A predefined search strategy, as shown in Appendix B, was used in both databases between November 15th_{and the 6}th_{of December 2016. Appendix B: Search strategies shows a}

comprehensive description of each search strategy. A summary of these search strategies can be found in Figure 1: Overview search strategies. The first orienting search was performed in the Cochrane library as an orienting search to find high level evidence such as systematic reviews.. Additionally, keywords were extracted from the references which could be used in the second search. Keywords were supplemented by performing an explorative search on Google (Scholar), PubMed and elicited from key papers. The second search was performed in OVID using keywords from the first search.

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12 Figure 1: Overview search strategies

Study selection and quality assessment

Articles were eligible to be included if several inclusion criteria were met. First, an English full text version of the article had to be available. Secondly, the study had to pertain a patient portal conform the definition which was provided in the previous section. Thirdly, the primary or

secondary objective of the study had to describe possible (subjective) factors which could influence the usage of a patient portal from the perspective of the patient with respect to provider and organizations. Articles which only reported on the quantitative outcomes (e.g. number of telephone calls, clinical outcome, and number of online messages) and overall satisfaction were excluded. There was no restriction on publication date.

During the first screening, articles were included for full-test reviews based on title and abstract screening. Subsequently, full-text screening was performed on relevant articles based on the predefined inclusion criteria. Results from included studies were discussed with two other researchers to check for validity and completeness. Screenings were performed by two

independent reviewers to increase screening reliability. Consensus was reached by discussing the results. Quality assessment of articles was performed by constructing a predefined appraisal list constructed by the author. Each study was appraised on; publication year, country, study design, key participant characteristics, setting, measurements, portal type, main functionalities of portal defined by article, possible influencing factors on use, and severe limitations.

Study analysis and reporting

Since most studies had a qualitative/descriptive design, a descriptive overview of the included articles was compiled. Factors and barriers were only reported if they were explicitly mentioned in an article. Common usability issues (e.g. Nielsen heuristics) were not reported since this is a property which is not specifically linked to portal use, but applies on every software application.

2.2 Results

2.2.1 Study selection

The Ovid search resulted in 1.229 resulted in unique articles. After title and abstract screening 115 articles remained for full-text screening. After this second screening, 38 articles met all inclusion criteria and were included for analysis. Most common reasons for exclusion during full text

screening were; articles did not discuss any barriers/facilitators (n=10), only objectives measures were presented (n=8) or the portal was managed by a third party (e.g. patient or insurer) (n=18). The flow diagram displayed in Figure 2 shows a graphic overview of the selection process.

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13 Figure 2: Flow diagram study selection

2.2.2 Characteristics of studies

Most studies were performed in North America, namely in the United States (n=23) and Canada (n=4). A variety of qualitative methods such as questionnaires (n=8), focus groups (n=10), and interviews (n=14) were used to measure the outcomes. Two studies only gave a description of an implemented portal in a healthcare organization [7][8]. Four articles used focus groups and interviews or questionnaires in their studies [6-9]. A large variety of portals were evaluated. Some studies (n=11) did not use a portal but only gave a description, which was in accordance with our

definition. Five studies reported evaluating multiple different portals [9]–[13]. Characteristics from all included studies are presented in Appendix C: Overview included studies.

2.2.3 Results

After reviewing, we identified 42 possible factors which could influence the adoption and use of patient portals. These factors can be divided into three actors; patient, provider, and organization. 2.2.3.1 Patient perspectives

Thirty factors on the patient level were identified. These factors can be divided into six generic clusters; (1) Social climate, (2) Skills/personal abilities,

(3) Usefulness/value, (4) Environmental factors, (5) Ease of use, and (6) Security/privacy. Each cluster will be discussed in the paragraphs below. Figure 3 contains an overview of how many times a specific factor was mentioned in the articles.

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Social climate

Four factors can be categorized in this cluster which is shown in Table 1. The first factor can be related to interference with the personal relationship of the provider and was reported by seven articles. Patients feared that using a portal could reduce face-to-face contact with the provider or even replace this entirely. Some patients worried that especially electronic messaging could diminish the in-person communication, but also endorsed the value of this feature [14].

Six articles reported the preferences of simply talking to a human instead of using a computer to view their medical data. Personal contact is especially required when patients want reassurance or verification regarding a health problem and need someone that can “feel”, especially regarding abnormal health information. Zarcadoolas et al. stated that patients used portal features for generic health issues and tasks (appointment scheduling, prescriptions), but wanted to talk to the provider when they wanted additional detailed information [15].

Some patients are conservative and do not want to reform to new technologies, either because they are satisfied with the current health delivery system or simply do not want to use new technologies. Some patients lack the interest of learning how to use a portal, are unmotivated, think that the provider should be in control or think they are too old.

Finally, involvement of others, such as family and providers which have no access to the medical file, is easier when discussing the health status of a patient. Patients can share this information themselves with the people around them.

Factor Source(s) Description

Patient perspectives

Social climate

Involvement of others [16][17] Using a portal, patient are able to involve others in their health status Interfere with personal

relationships [13], [14], [18]–[22] A portal could interfere with the personal relationship between patient and provider by replacing the physical consultations Prefer talking to real

person [13], [15], [18], [20], [22], [23] Patients could prefer in-person communication with providers instead of sending a message via a portal Conservative [18], [20], [24]–[27] Patients do not want to use portals because they are satisfied with the

current health delivery system or simply do not want to use new technologies

Table 1 – Social climate factors from patient perspective

Personal abilities and skills

Three factors can be categorized as personal factors influencing portal use as shown in Table 2. Ten articles mention issues that are concerned with patient literacy. Patients with low health literacy could potentially have a low comprehension of the data, which could result in

misinterpretations and information overload. Three articles mentioned that numeracy skills may serve as barrier for patients to utilize the patient portal, rendering the patient unable to correctly interpret numeric values [12], [15], [28].

Two articles explicitly mentioned cognitive overload, which is closely related with health literacy. Cognitive overload can occur when too much information is shown to the patient and is simply overwhelmed, thus hindering information interpretation.Finally, correctly using a computer could pose as barrier for patients with low computer literacy. Computer literacy is often denoted as the digital divide where patients have access to a computer and Internet, but are unable to use the computer adequately. Tieu et al divided IT literacy into two types: basic and routine computer skills. Basic computer skills are related to inexperienced users which have difficulty using the mouse, keyboard, search bars, and uniform resource locators (URLs) [29]. Routine computer barriers can be experienced by any user with or without adequate computer literacy. Computer literacy could be an important factor for the elderly since they are less accustomed in using computers in their daily life [10], [30].

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Personal abilities and skills

Cognitive overload [16], [22] Patients can be overwhelmed with the amount of information, resulting in a cognitive overload

Health literacy/ numeracy

skills [7], [9], [10], [12], [15], [18], [24], [28], [30], [31]

Patients with low health literacy could potentially have a low comprehension of the data, which could in turn result in misinterpretation and information overload

Computer/technical skills /

IT literacy [10], [14], [18]–[20], [29]–[31] Correctly using a computer and accessing the portal could pose as barrier for patients Table 2 – Personal abilities and skills factors from patient perspective

(Perceived) Usefulness/value

Nine factors were found related to (perceived) usefulness and the value of a portal as shown in Table 3. Naturally, a patient portal should be useful for the patient, but one feature was consistently mentioned in many articles; communication supplementation. Sixteen articles mentioned this facilitator which enables patients to view information between in-person visits and the possibility to monitor their own health outside the clinical setting. Patients find it useful to read their own health information anytime, anywhere, since this improves their understanding of their care plan and health. Nguyen and Goel et al. [27], [30] mentioned some patient groups such as chronically ill, young mothers, and elderly might benefit more from using a patient portal [27], [30].

Many other useful features exist which contribute to the perceived usefulness of a patient portal. These have been bundled in one facilitator, namely usefulness. Twelve articles enumerate different beneficial patient portal factors such as feeling more in control, empowerment, desire to learn, less cumbersome than paper-based files, reinforced efficacious behavior and portal serving as a

reminder system.

Next to reading health information in a portal, the interaction/engagement, so called patient business tasks, are also very important for patients. These, business tasks enable patients to have direct communication with the provider, for example appointment scheduling, eConsult and providing feedback on content can facilitate the adoption of portal. Clark et al reported the intention to use a portal was almost twice as high when certain patient business tasks were available in portals to prevent in-person consultations [32].

Seven articles mentioned the ability to prepare for in-person consultations. Utilizing a portal allows patients to be more knowledgeable and enables them to ask more specific questions about their diet, exercise, medication, and other management topics during consultations. Patients

experienced having more meaningful and interactive conversations with the provider and thought they could to think more about the questions and to explain it better during consultations.

Some portals had eConsult or eMessaging capabilities which enabled patients to contact a provider via a portal. A facilitator linked with this feature is the ease of communicating without physically visiting the provider. Patients could submit questions to their provider, preventing an in-person consultation. Patients were able to send a message to providers at a convenient time instead of phoning, thus preventing telephone tag. On the other hand, using these digital communication features might decrease the personal relationship with a provider, which has been discussed earlier.

Another facilitator which is implemented in different portals is proxy access which enables authorized individuals to access the records of another patient without using the patients’ credentials. This feature enables the next of kin to access, use and manage the records of their spouse, thus acting as a delegate. Although this feature is valued by many, some providers and patients raised concerns about privacy and confidentiality [15], [33], [34].

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16 Outdated/incomplete/hidden health information or delayed publishing of reports is a barrier which can be categorized as the factor “completeness and/or accessibility”. Patients experienced

incorrect or inaccurate medical history and others thought that the information in the portal was too limited and wanted to see more detailed information [12], [20], [34], [35]. On the other hand, Woods et al reported that patients did not want to see every detail of their clinical record because this caused stress and discomfort [17]. Accessibility is linked with rapid access to medical

information, which was appreciated by patients, because they did not have to call the provider for

lab results [21]. However, a publication delay is often implemented in a portal where the provider must either actively publish new results or are automatically delayed for several weeks [12]. However, when the provider does not actively publish new results the patient does not have access to an updated medical record.

Finally, Woods et al mentioned patients found inconsistencies between verbally discussed content during the in-person consult and related clinical notes published in the portal. Patients had to formally request a change in the record and one patient even discussed seeking an alternate provider because of this inconsistency [17].

(Perceived) usefulness and value

Easier means of

communication [10], [13]–[16], [22], [30], [34]–[36] Patients using a portal can improve the communication with the provider by sending electronic messages Improve the

effectiveness of in-person visit

[12], [14], [16], [17],

[22], [37], [38] A portal can enable patients to increase the efficiency of an in-patient consult since patients can prepare for a consultation. For example; ask more specific questions, ask more questions, and think more about possible questions, enabling patients to explain them better.

Need for engagement [12], [16], [22], [25],

[28], [30], [32], [35] Portal functionalities which improve direct communication with the provider are valued by patients. Portals should have active functionalities such planning a new appointment, eConsultation, and providing feedback on content

Rapid access to new

data [8], [35] Patients want to have rapid access to new health information such as lab values. (Perceived) usefulness [15], [16], [19]–[23],

[30], [31], [36], [39], [40]

Patients experience different behavior thoughts about the usefulness such as; feeling more in control, empowered, desire to learn, less cumbersome than paper-based files, reinforced efficacious behavior, and portal serving as a reminder for appointments or health changes Proxy access [7], [10], [14], [15],

[33], [34], [41] The feature to authorize an individual to access the portal of someone else. Communication

supplementation [10]–[15], [17], [20]–[22], [26], [27], [30], [35], [38], [40]

Ability to seek medical advice between visits on topics including medication side effects, test results, symptoms, and the ability to monitor health status and compare with previous lab values Inconsistencies in

Content [17] Inconsistencies between the content that was verbally discussed during an in-person consult and related clinical notes published in the portal.

Accessibility/completen

ess [7], [8], [12], [17], [20]–[22], [31], [34], [35]

Information in the portal could be incorrect, tenuous or missing. Some information can be hidden to the patient or censored, although patients wants to view information on a detailed level

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Environmental factors

Nine factors can be categorized as environmental factors as shown in Table 4, eight articles

mentioned lack of awareness as a barrier. Patients were often unaware of the existence of a portal, had low knowledge about the functionalities or did not know how to enroll. Patients stated they often accidentally ‘discovered’ the existence of a patient portal after being informed by their provider [19], [26], [27], [36]. To increase awareness, different promotional strategies can be used such as posters, brochures, e-mails, information on the website, waiting room videos, and automated voice messages [11].

Ten articles mentioned the lack or limited access to a computer/Internet as possible barrier for using a portal, which can also be denoted as “digital divide”. In some cases patients did have a computer, but this was not set-up, which could also be related to computer literacy [20]. Others did have a working computer, but did not have an Internet connection, for example because of the costs. Gagnon et al mentioned that the most disadvantaged patients without Internet, would be penalized in the future when all information is online, since they cannot access and utilize these technologies. Harrison et al reported limited internet access is only a barrier for patients who do not intend to use a portal [40].

Another barrier related to costs is usage fees of a portal which was mentioned by three articles. Patients will be reticent to use a patient portal if they must pay usage fees. Patients might believe they already pay sufficiently for healthcare or might not have the financial resources [31].

Technical problems with the portal such as crashes, bugs, browser issues hindered portal usage. Finally, one article reported that some of the patients had high expectations due to

advertisements, but the actual experience differed when using the portal [19]. Basically, patients were disappointed due to missing/deficient functionalities and stopped using the portal.

Some factors could either be a facilitator or a barrier, depending on the implementation. Support

from the professional could motivate patients to use the portal thus increasing the adoption speed.

As mentioned before, awareness is (partly) created by the provider, thus promotion by the provider could be a facilitator. The sustainability and patient opinion of portals is also increased when providers actively use information provided by patients [31]. On the other side, providers could discourage patients in using portals when their own workload is increased or are

conservative (see paragraph provider perspectives) [23].

Patients want to see their health information in a timely fashion, but requests which are send to providers should also be processed on time, for example; slow responses from providers regarding eConsultations and prescription renewal could be perceived as a barrier. Next, support from kin could be a facilitator. Family members could help patients with lower health literacy to teach the necessary skills and could serve as a "delegate" which helps motivate the patient [41]. Finally, two articles mentioned the importance of cross-platform software to make sure that the portal is accessible on all hardware and software platforms.

Patient perspectives

Environmental factors

Costs/ Usage fees [24], [30], [31] The costs that are associated with the usage of the portal could pose as a barrier for those who cannot afford, or do not want to pay for it

Technical problems [8], [23] Technical problems prevent using a portal efficiently Lack of awareness [11], [19], [26],

[27], [32], [36], [41], [42]

Patients simply do not know about the existence of a portal

Expectations vs

experience [19] Expectations from the patients due to promotion and advertisement were not met when using the portal. "Disappointment" could be a barrier for further use. Support from

professional [19], [22], [23], [31], [36] Portal usage can be influenced by the provider which could encourage or discourage using a portal Limited access to the

Internet / computer [7], [14], [19], [20], [24], [25], [27], [31], [36], [40]

Patients might have the skills to use a computer but have no access to a computer or the internet.

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18 Timeliness [7], [12], [32] Patient requests should be answered in a timely manner

Support from kin [41] Family members could help patients with difficulties while using a portal and could assist the patient

Cross-platform

software [31], [41] The portal should be accessible on different hardware devices (e.g. laptop, tablet, mobile) and different operating systems (e.g. Windows, Apple, Android) Table 4 – Environmental factors value factors from patient perspective

Ease of use

Four factors can be categorized in this cluster as shown in Table 5. Simple usability issues contributing to the usability of a portal are not reported since these are well known in literature. Two factors can be classified as barriers, the others can either be a facilitator or a barrier, depending on the implementation. Ten articles identified the registration and login process as a barrier. Patients did not understand how to enroll in the portal or experienced difficulties while registering such as requiring a two-step, in-person verification to gain access [18], [39]. Another problem was the log-in procedure; if the credentials were forgotten/lost difficulties were

experienced during the recovery procedure for example complicated and long (temporary) log-in codes.

Difficult medical content was recurrently reported in fifteen articles. Medical terms and information

could overwhelm the patient, thus restricting the ability to interpret the information. Some patients even mentioned the fear of not understanding jargon (patient anxiety) or simply did not want to read every detail [13], [15], [20], [22]. However, this fear was not acknowledged in all articles since some patients wanted to view detailed health information.

Two factors could either pose as a barrier or as a facilitator when implemented correctly. The need

for training and support on using the portal could facilitate in the adoption. Gee et al stated that

patients required training since they learned using the portal by trial-and-error and were uncertain if they were utilizing the system correctly [12]. Patients also require technical assistance when encountering bugs or have questions. Training and support could be given in the form of personal (one-on-one) training at public locations, but also tutorials, manuals and online video’s.

Three articles mentioned the option to customize the user interface to suit personal preferences of the patient. Patients should be able to tailor the portal to display or highlight information which is deemed as more important for them.

Patient perspectives Ease of use Difficult medical content [12]–[14], [17], [18], [20]–[22], [29]–[31], [33], [34], [38], [43]

Content in the portal which is provided in jargon can be difficult for patients to understand

Registration and login

process [14], [16], [18], [20], [21], [25], [27], [34], [35], [39]

The registration process can be difficult because of in-person verification when registering for a portal account. The login procedure can be difficult due to password requirements, long temporary passwords, the recovery process and two factor authentication.

Need for training and

support [12], [18], [20], [23], [31], [36], [39], [41]

Training on how to use the portal can be beneficial to fully utilize the portal. Technical support is required for bugs, crashes and assistance

User interface

customization [12], [30], [31] A customizable user interface which suits the personal preferences of a patient Table 5 – Ease of use factors from patient perspective

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Security/ privacy

security and privacy was mentioned by twelve studies, indicating the importance of this factor.

Patients were often concerned about security issues such as hacks, breaches and the idea of having information available through the Internet. These concerns are based on previous (bad) experiences with viruses or malware, causing patients to be reluctant when using portals [14], [23], [31]. The ability to securely access the portal in a public location was also seen as an issue [22], [24]. Finally, patients fear that third parties such as, governments, insurance companies, researchers, employers, commercial industry could violate their privacy by having unauthorized access to the medical information.

Security/ privacy [10], [12], [14]–[16], [18]– [20], [22]–[25], [27], [30]– [32], [34], [39], [40], [43]

The fear of breaches, hacks in the patient portal, possible violating the patients' privacy, but also the concern that the information is accessible for third parties

Table 6 – Security/ privacy factors from patient perspective

2.2.3.2 Provider and organizational perspectives

Sixteen articles discussed factors that are related to providers. These factors are applicable on the provider such as the general practitioner or medical specialist and can be influenced by patients. Twelve factors were found and these can be divided into three clusters: (1) Patient-physician linked, (2) Environmental, and (3) Training and education. Three factors on an organizational level were identified, each cluster will be discussed in the paragraphs below.

Patient-provider linked factors

Seven factors can be linked to the patient-provider relationship where the provider could potentially influence the intention portal usage of patients as shown in Table 7. Six articles mentioned that providers fear that patients do not understand the health information if this was not discussed earlier with the patient (or long time ago), especially if values are abnormal. This can be defined as (unnecessary) patient anxiety. Additionally, provider worry about publishing clinical notes because this could upset the patient and appropriate language is important when discussing sensitive topics [38]. However, this is not acknowledged by patients, since some articles conclude that patients do not worry about anxiety and are eager to have more health information available to them [34], [37], [40].

Two articles mentioned that providers are afraid of being controlled by patient because they feel being continuously monitored by patients. Providers even fear that they must adjust their method of recordkeeping when patients have access to clinical notes [43]. Although this is often controlled in tethered portals, physicians might be reluctant to use patient entered data due to the lack of credibility since patients could potentially hide, modify or add incomplete and/or inaccurate information in their record [31]. Finally, the low uptake of portals by patients discourages providers adopt portals in their current workflow. They are reluctant to actively use and promote the portal, since patients barely use portals [10].

Several facilitators are also identified. Using portals, providers expect to improve their care delivery and to engage patients, which results in higher patient satisfaction [10], [38], [44]. Providers also expect opportunities to ease the communication with patients by sending digital messages to patients, instead of phone calls [10].

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Factor Source(s) Description

Provider perspectives

Patient-physician linked

Improved patient

satisfaction [10], [38], [44] Providers think patient satisfaction is increased thus improving the relationship with the patient Restricted patient control

of data [31] Patient entered data could be less trustworthy, accurate and complete. Additionally, there could be problems with legal accountability of patient entered data

Fear of control [38], [43] Providers fear they are continually monitored and controlled by patients, with the consequence of having to change their method of recordkeeping

Restrict patient to access

the data/ patient anxiety [10], [34], [37], [38], [40], [43]

Providers fear patients do not understand all the information in a portal thus causing patient anxiety

Easier means for

communication [10] Communication with the patient can be eased by sending electronic messages instead of phone calls Low uptake [10] Only a few patients use the portal, thus discouraging providers to adopt the

portal in their workflow Table 7 – Patient-provider linked factors

Environmental factors

Table 8 shows an overview of factors occurring at the provider level. Nine articles mentioned the required change in workflows and the fear of an increased workload. For example, providers fear that patients want immediate response to their electronic requests, or are overwhelmed by repeated electronic messages send by patients [10]. However, providers also mentioned that they were hopeful that this increase of workload might be offset by a decrease in patient visits and phone calls [10], [43]. Five articles mentioned lacking remuneration as a barrier for general adoption. Currently, providers are afraid of working in their own time without any compensation [43]. By providing financial compensations or other incentives such as prizes, and awards the adoption rate could be increased.

Need for Training and education

Four articles mentioned that providers were willing to promote and use the patient portal, but lacked knowledge to correctly inform the patient about the enrollment process, functionalities and benefits of using a portal. Providers required proper education and training on how to use the portal to overcome this barrier.

Environmental

Remuneration [11], [23], [31],

[43], [44] Providers are not remunerated for using a portal. Providers are afraid of working in their own free time Alignment of workflow

/increase of workflow [7], [9]–[11], [19], [28], [38], [43], [44]

Implementing a portal requires a change in current workflows and providers are afraid of an increased workload

Need for training and

education [11], [36], [44] Providers require training and education on how to use the portal and to properly inform the patient Table 8 – Environmental and need for training education factors from provider perspective

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Organizational perspectives

Interoperability could be a barrier for healthcare organizations and the providers. Providers already

use multiple systems which are not fully integrated and adding a new system which is not linked with existing systems is not desirable. Although a tethered portal is often build on top of the existing infrastructure such as the EHR, incorporating features such as appointment scheduling and billing into the portal would require extensive collaboration between stakeholders to achieve the necessary technical and workflow integration [9], [31].

An organizational facilitator was a common vision which reflected the strategic priorities of the organization, thus helping in the implementation of a portal [11]. Lastly, the meaningful use

financial incentive which was discussed earlier may encourage organizations to increase the

adoption rate of patient portal [9]. However, ultimately the patients will have to drive the widespread uptake of portals into their organizations [9]. An overview of all factors is shown in Table 9.

Factor Source(s) Description

Organization perspectives

Interoperability [9], [31] Incorporating portal features requires extensive collaboration between stakeholders to achieve the necessary technical and workflow integration Costs [9] Financial issues to build and maintain a portal could pose as a barrier. However,

initiatives such as the meaningful use incentive provides motivation to implement a portal in a healthcare organization

Organizational vision [11] A common vision which reflects the strategic priorities of the organization can help in the implementation of a portal

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Figure 3 - Frequency of factors on patient level

0 2 4 6 8 10 12 14 16

Health literacy / numeracy skills Computer literacy and technical skills Cognitive overload

Personal abilities and skills

Frequency

0 2 4 6 8 10 12 14 16

Interfere with personal relationships Conservative Prefer talking to real person Involvement of others

Social climate

Frequency 0 2 4 6 8 10 12 14 16 Communication supplement (Perceived) usefulness Easier means of communication Need for engagement Accessibility/completeness Proxy access Improve the effectiveness of in-person visit Rapid access to new data Inconsistencies in Content

(Perceived) Usefulness and value

Frequency

0 2 4 6 8 10 12 14 16

Limited access to internet/computer Lack of awareness Support from professional Timeliness Costs/ Usage fees Cross-platform software Technical problems Expectations vs experience Support from kin

Environmental factors

Frequency

0 2 4 6 8 10 12 14 16

Difficult medical content Registration and login process Need for training and support User interface customization

Ease of use

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2.3 Discussion

We identified factors which could influence the use of patient portals focused on the patient perspective with respect to providers and healthcare organizations. Factors were classified as facilitators, barriers, preconditions, and success factors. Several factors seem to be more important to patients than others. Concerns about security and privacy, difficult medical content, health and computer literacy, login process, and lack of awareness are often mentioned by patients (Figure 3). The most important facilitator is the communication supplement because portals enable patients to monitor their health and communicate with providers outside the clinical setting. After further investigation, some of these barriers were already known as early as 2009, for example costs, privacy and security concerns, inconveniences in using a portal, design shortcomings, and the inability to share information across organizations [5]. This supports the assumptions that addressing barriers is a strenuous task.

2.3.1 Results placed in Dutch setting

The barriers deemed as more important are also present in the Dutch setting. For example, the lack of awareness and low uptake of portals are consistent with the yearly Nictiz eHealth monitor of 2016. As mentioned before it was concluded that 15-20% of the providers state that patients can electronically access their medical data, but only 6% of the patients are actually aware of this possibility [45]. Additionally, more than 66% of the patients are unaware if online access to their medical data is possible [45]. This finding suggests that the biggest barrier for patient portals in the Netherlands is awareness since most inhabitants do not even know about portals while the interest is high.

Login and registration issues are also present in the Netherlands. Almost all implemented portals in the Netherlands have two factor authentication, which is also mandatory through legislation [46]. Most portals use the Dutch service called “DigiD” with sms verification. However, people often experience DigiD as a complicated tool because they do not use it frequently and forget passwords/codes thus creating a barrier to use a portal [46].

Many other found factors in this review can be related to the Dutch setting, and an exploratory report published by Nictiz partially present factors which were identified in 2011 for the Dutch setting [6]. Factors such as difficult medical content, accessibility of information, need for engagement is also listed in this report.

2.3.2 Misconceptions hinder adoption

Patients also seem to have misconceptions about patient portals when they have no/low experience with portals and/or technology. The fear of interference with personal relationships was often reported in articles were electronic messaging features were available/presented. However, this is not true, since electronic messaging is often supplementary with the current contact possibilities, rather than replacing telephone messages and physical consultations [34], [47]. Hassol et al explained that patients use both communication tools, but for two different goals; online communication was mainly used for prescriptions, schedule appointments and general health questions, in-person communication remained preferred for treatment instructions and health issues [34], [47].

On the other hand, providers also have (partial) misconceptions about the reported barriers. Providers fear information provided by the patients is incomplete or inaccurate. However, Wuerdeman et al showed that patients add valuable health information and have important knowledge about their basic health maintenance and should assist providers in recording this information [48]. Providers are also cautious about publishing detailed medical information because this could result in an increase workload and possibly cause patient anxiety [49]. Pillemer et al did show that some patients had an emotional response along with an increase of healthcare

consumption (more phone calls or appointments), but only because these patients were triggered to change their lifestyle behavior [50].

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24 These existing misconceptions hinder portal adoption and can easily be prevented by addressing them in future policy, for example by providing clear instructions and guidance about the portal and functionalities should be emphasized to the portal actors. However, for other barriers different methods must be employed to address them.

2.3.3 Which stakeholder can address the barriers

The factors in Table 1 and 2 are categorized to the stakeholder who experiences the facilitator/barrier, but not every barrier can also be addressed and solved by that same

stakeholder. A barrier which hinders a patient could be caused by the software, thus can only be solved by the portal developers. For example, a patient which encounters a bug in a portal cannot solve this problem; the portal developer should address this issue. In order to orientate which stakeholder is responsible for addressing the identified factors Table 10 – Responsible stakeholders is constructed. Since several factors are patient/provider linked not all factors are mutually

exclusive for one stakeholder.

Patient level Portal developer level Provider/organizational level National level Conservative Technical problems Inconsistencies in Content Remuneration Prefer talking to real person Registration and login process Difficult medical content

Cognitive overload Need for training and support Timeliness

Health literacy/ numeracy skills User interface customization Organizational vision Computer/technical skills / IT

literacy Security/ privacy Alignment of workflow /increase of workflow

Involvement of others Cross-platform software Easier means for communication Limited access to the

Internet / computer Interoperability Restrict patient to access the data/ patient anxiety

Support from kin Costs Fear of control

Low uptake Proxy access Improved patient satisfaction

Communication supplement Accessibility/completeness Restricted patient control of data

Easier means of communication Need for engagement Communication supplement

(Perceived) usefulness Costs/ Usage fees Improve the effectiveness of in-person visit

Interfere with personal

relationships Rapid access to new data Easier means of communication (Perceived) usefulness

Interfere with personal relationships

Lack of awareness

Expectations vs experience

Support from professional

Table 10 – Responsible stakeholders. *not all factors are mutually exclusive. ** factors in italic can be defined as facilitators. Table 10 clearly shows that most barriers are present at the provider/healthcare organization level and these stakeholders have an important role in accelerating or even deceleration the adoption of patient portals. Most factors on the provider/organizational level are physician-patient linked but it is imperative for providers to promote and cooperate in the implementations of patient portals. Future policy should therefore focus on addressing the barriers and utilizing the facilitators on the provider and organizational level in order to accelerate the adoption rate. However, the other two stakeholders also have clear factors which can be addressed.

Tethered patient portals and influencing use factors from the patient perspective