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Cognitive Accessibility in eHealth – Introducing Participatory Research through Design
KTH, School of Electrical Engineering and Computer Science (EECS), Human Centered Technology, Media Technology and Interaction Design, MID.ORCID iD: 0000-0003-4925-8080
2025 (English)Doctoral thesis, comprehensive summary (Other academic)
Sustainable development
SDG 3: Good Health and Well-Being
Abstract [en]

The digitalisation of healthcare often comes with promises of solving future expected increasing demands on healthcare and ensuring equitable health service distribution. However, this promise is not yet realised in Sweden’s present eHealth services. Meanwhile, Swedish public healthcare is moving towards person-centred care, where the person’s resources, experiences, and needs are considered. The primary motive of this thesis is to contribute to knowledge on how to design eHealth services that support cognitive accessibility for increased equity. The work in this thesis is based on the idea that accessibility is important, and that people affected by problems in eHealth should be part of the design of accessible eHealth services. The research started by looking into previous research on accessibility in eHealth services and then focused on Sweden’s local context. There are regulations on accessibility in eHealth services the European Union (EU). Therefore, we investigated how Swedish public healthcare complies with this regulation. The scope was then narrowed to cognitive accessibility, an area not sufficiently covered by the EU regulations and current guidelines. Together with people with lived experiences of cognitive impairments, we explored participatory design methods for cognitive accessibility and how to make an impact in real-life settings. We used two cases for the research: the personal eHealth services on the Swedish national healthcare website 1177.se; and a symptom checker and triage tool, called 1177 direkt, presented as a conversational agent. For the first case, we co-designed a prototype for enhanced cognitive accessibility and used it as a dialogue tool to make an impact on the development of the existing eHealth services. For the second case, we evaluated 1177 direkt and conducted co-design activities for suggestions on enhanced cognitive accessibility with a collaborative approach with representatives from the product owner. In this case, the product owners are both the company that develops and markets the product, and Inera, which procures the product so that public healthcare providers can select it from Inera’s range of services and products. This thesis ii concludes that eHealth services that are experienced as inaccessible will most likely remain inaccessible if we continue developing eHealth services as before. Considering the insights from people with lived experience of cognitive impairment in participatory approaches when designing eHealth services can contribute to eHealth services that support person-centred care.

Abstract [sv]

Digitalisering av hälso- och sjukvården lovar ofta att lösa framtida ökande krav och säkerställa rättvis fördelning av hälso- och sjukvårdstjänster. Dessa löften har ännu inte infriats i Sveriges nuvarande eHälsotjänster. Samtidigt rör sig den svenska offentliga hälso- och sjukvården mot personcentrerad vård, där individens resurser, erfarenheter och behov beaktas. Syftet med denna avhandling är att bidra till kunskapen om hur man utformar eHälsotjänster som stödjer kognitiv tillgänglighet för ökad jämlikhet. Avhandlingen bygger på idén att tillgänglighet är viktigt och att personer som påverkas av problem inom eHälsa bör vara en del av utformningen av dessa tjänster. Forskningen började med att granska tidigare forskning om tillgänglighet i eHälsotjänster och fokuserade sedan på den svenska kontexten. Det finns lagar om tillgänglighet i eHälsotjänster inom Europeiska unionen (EU). Vi undersökte hur den svenska offentliga hälso- och sjukvården följer EU:s lagar om webbtillgänglighet. Därefter fokuserade forskningen på kognitiv tillgänglighet, ett område som inte täcks tillräckligt av EU-lagar och de riktlinjer lagarna pekar på. Tillsammans med personer med levda erfarenheter av kognitiva funktionsnedsättningar utforskade vi deltagande designmetoder för att förbättra kognitiv tillgänglighet i eHälsotjänster samt hur man kan påverka de befintliga eHälsotjänsterna. Vi använde två fall: de personliga eHälsotjänsterna på den svenska nationella hälso- och sjukvårdswebbplatsen 1177.se samt ett symptombedömnings- och triageverktyg utformat som en samtalsagent, 1177 direkt. I det första fallet samskapade vi en prototyp för förbättrad kognitiv tillgänglighet som vi använde som ett dialogverktyg. För det andra fallet utvärderade vi 1177 direkt och genomförde samskapande aktiviteter för förbättringsförslag gällande kognitiv tillgänglighet. Studien gjordes med ett samarbetsinriktat tillvägagångssätt tillsammans med representanter från produktägarperspektivet. Produktägaren i detta fall är företaget som utvecklar och lanserar produkten på marknaden, och Inera som upphandlar produkten så att offentlig sjukvård kan välja produkten från Ineras utbud av tjänster och produkter. Slutsatsen är att om vi fortsätter utveckla eHälsotjänster som tidigare, kommer de troligen att fortsätta vara svåra att använda för många. Genom att involvera personer med levda erfarenheter av kognitiva funktionsnedsättningar i utformningen kan vi skapa eHälsotjänster som är lättare att använda och som bättre stödjer personcentrerad vård.

Place, publisher, year, edition, pages
Stockholm: KTH Royal Institute of Technology, 2025. , p. 67
Series
TRITA-EECS-AVL ; 2025:62
Keywords [en]
Cognitive Accessibility, eHealth, Participatory Design, Research through Design, Impairment, Disability
National Category
Human Computer Interaction
Research subject
Human-computer Interaction
Identifiers
URN: urn:nbn:se:kth:diva-363313ISBN: 978-91-8106-302-8 (print)OAI: oai:DiVA.org:kth-363313DiVA, id: diva2:1957911
Public defence
2025-06-13, https://kth-se.zoom.us/j/68571101309, Kollegiesalen, Brinellvägen 6, Stockholm, 14:00 (English)
Opponent
Supervisors
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2018-01806Region Västra Götaland
Note

QC 20250513

Available from: 2025-05-13 Created: 2025-05-13 Last updated: 2025-05-21Bibliographically approved
List of papers
1. Development and Evaluation of eHealth Services Regarding Accessibility: Scoping Literature Review
Open this publication in new window or tab >>Development and Evaluation of eHealth Services Regarding Accessibility: Scoping Literature Review
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2023 (English)In: Journal of Medical Internet Research, E-ISSN 1438-8871, Vol. 25, article id e45118Article in journal (Refereed) Published
Abstract [en]

AbstractBackground:Accessibility is acknowledged as a key to inclusion in the Convention of Rights for People with Disabilities. An inaccessible design can result in exclusion from eHealth and cause disability among people who have impairments.

Objective:This scoping literature review aimed to investigate how eHealth services have been developed and evaluated regarding accessibility for people with impairments.

Methods:In line with Arksey and O’Malley’s framework for scoping studies and using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR), we conducted a search in 4 databases (PubMed, Scopus, IEEE, and Web of Science) in October 2020 and an update of the search in June 2022. The search strategy was structured according to the PICO model as follows: Population/Problem, digital accessibility for users with impairment; Intervention, health care delivered by any digital solution; Comparison, not applicable; Outcome, use of and adherence to (1) Web Content Accessibility Guidelines (WCAG), (2) other accessibility guidelines, and (3) other means, for designing or evaluating accessibility in eHealth services. A Boolean search was conducted by combining terms related to accessibility and eHealth. All authors participated in screening abstracts according to the eligibility criteria. Each publication, containing a potentially relevant abstract, was read (full text) and assessed for eligibility by 2 authors independently and pairwise. Publications deemed eligible were read by all authors and discussed for consensus.

Results:A total of 8643 publications were identified. After abstract screening, 131 publications remained for full-text reading. Of those, 116 publications were excluded as they did not meet the eligibility criteria. Fifteen publications involving studies of 12 eHealth services were included in the study. Of the 15 publications, 2 provided a definition of accessibility, 5 provided an explanation of accessibility, and 8 did not provide any explanation. Five publications used the WCAG to evaluate accessibility when developing eHealth services. One publication used International Organization for Standardization (ISO) 29138, ISO 2941, and ISO/International Electrotechnical Commission (IEC) 30071-1 standards together with the Spanish Association for Standardization (UNE) 139803 standard. Eleven publications used other means to address accessibility, including text-level grading; literature review about accessibility; user tests, focus groups, interviews, and design workshops with target groups of patients, relatives, and health care professionals; and comparative analysis of existing technical solutions to provide information about useful requirements.

Conclusions:Although a clear definition of accessibility can enhance operationalization and thus measurability when evaluating accessibility in eHealth services, accessibility was insufficiently defined in most of the included studies. Further, accessibility guidelines and standards were used to a very limited extent in the development and evaluation of eHealth services. Guidelines for developing complex interventions that include guidance for accessibility are motivated to ensure that accessibility will be considered systematically in eHealth services.

Place, publisher, year, edition, pages
JMIR Publications Inc., 2023
Keywords
eHealth, accessibility
National Category
Human Computer Interaction
Research subject
Human-computer Interaction
Identifiers
urn:nbn:se:kth:diva-334548 (URN)10.2196/45118 (DOI)001064943100001 ()37590050 (PubMedID)2-s2.0-85168256037 (Scopus ID)
Note

QC 20230823

Available from: 2023-08-22 Created: 2023-08-22 Last updated: 2025-05-13Bibliographically approved
2. How have public healthcare providers in Sweden conformed to the European Union’s Web Accessibility Directive regarding accessibility statements on their websites?
Open this publication in new window or tab >>How have public healthcare providers in Sweden conformed to the European Union’s Web Accessibility Directive regarding accessibility statements on their websites?
2025 (English)In: Universal Access in the Information Society, ISSN 1615-5289, E-ISSN 1615-5297, Vol. 24, no 1, p. 449-462Article in journal (Refereed) Published
Abstract [en]

The Web Accessibility Directive (WAD) is part of the European Union’s work for digital inclusion. The WAD obligates that public sector bodies’ websites meet accessibility standards and provide an accessibility statement on the website informing about inaccessible content, and a feedback mechanism for reporting accessibility issues or requesting inaccessible content in an accessible format. The objective of this study was to evaluate how healthcare providers in Sweden have applied accessibility statements on their websites as regulated by law. A descriptive study using a mixed methods approach was conducted, by quantitative descriptive data analysis of the healthcare providers’ accessibility statements compliance to requirements and qualitative data analysis of the written information provided in the accessibility statement. All but one of the 37 evaluated healthcare providers published an accessibility statement. None of the healthcare providers fully met the requirements for accessibility statements, and no one complied with the intention of the law, i.e. to provide accessible health information and eHealth services. There was no or minor progress between the first and the latest published accessibility statement. The possibility to declare no or partial compliance with the law, or claim disproportionate burden, and the lack of enforcement procedures, risk producing symbolic actions e.g., publishing accessibility statements without intention to abide by the law. We suggest that the directives for accessibility statements should be advanced regarding comprehensiveness, understandability, and usefulness. It is suggested that the assessment protocol developed for this study may be used for future evaluations of accessibility statements.

Place, publisher, year, edition, pages
Springer Nature, 2025
Keywords
Human–computer interaction, Web accessibility directive, Web content accessibility guidelines, WCAG, eHealth, Disability
National Category
Human Computer Interaction
Research subject
Human-computer Interaction
Identifiers
urn:nbn:se:kth:diva-339735 (URN)10.1007/s10209-023-01063-1 (DOI)001101815400001 ()2-s2.0-85176447055 (Scopus ID)
Funder
KTH Royal Institute of TechnologyForte, Swedish Research Council for Health, Working Life and Welfare, 2018-01806Region Västra Götaland
Note

QC 20231120

Available from: 2023-11-16 Created: 2023-11-16 Last updated: 2025-05-13Bibliographically approved
3. A collaborative approach to the evaluation of cognitive accessibility of a conversational agent for public healthcare
Open this publication in new window or tab >>A collaborative approach to the evaluation of cognitive accessibility of a conversational agent for public healthcare
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(English)Manuscript (preprint) (Other academic)
Abstract [en]

Conversational agents are increasingly being introduced in healthcare to enhance access to healthcare and address limited healthcare resources. The aim of this study was to explore experiences of a conversational agent for symptom checking and triage tool assessing the urgency and appropriate level of care implemented in public healthcare from a cognitive accessibility perspective.With a Participatory Action Research approach this study includes: 1) A Participatory Cognitive Barrier Walkthrough in workshops with people with cognitive impairment (n=7), product owner representatives (n=4), and researchers (n=5), followed by a workshop for improvement suggestions; 2) A paired interview with healthcare system specialists (n=2).The data from the study was analysed using reflexive thematic analysis, resulting in five themes: ‘The design of the eHealth service created expectations that were not met during interaction; ‘The eHealth service uses a difficult language’; ‘The eHealth service trigger negative emotions and reactions’; ‘The layout and graphic design of the eHealth service is difficult and sometimes misleading’; and ‘The eHealth service lack in trustworthiness’. The findings show the importance of including people with lived experience of cognitive impairment, to expose and find solutions for cognitive accessibility issues

Keywords
Interaction design, eHealth, Participatory Action Research, Process and methods, Participatory design, User evaluation
National Category
Human Computer Interaction
Identifiers
urn:nbn:se:kth:diva-363314 (URN)
Funder
Forte, Swedish Research Council for Health, Working Life and WelfareRegion Västra Götaland
Note

Accepted for publication April 20, 2025 in "Interacting with Computers" (Oxford Academic)

QC 20250513

Available from: 2025-05-13 Created: 2025-05-13 Last updated: 2025-05-13Bibliographically approved
4. Participatory Research through Design for societal change- a case study of co-designing a prototype for enhanced Cognitive Accessibility of an eHealth service
Open this publication in new window or tab >>Participatory Research through Design for societal change- a case study of co-designing a prototype for enhanced Cognitive Accessibility of an eHealth service
(English)Manuscript (preprint) (Other academic)
Keywords
Web accessibility, eHealth, user experience, Participatory Design, Participatory Action Research, prototype, dialogue, user participation
National Category
Human Computer Interaction
Identifiers
urn:nbn:se:kth:diva-363316 (URN)
Funder
Region Västra GötalandForte, Swedish Research Council for Health, Working Life and Welfare
Note

Submitted to International Journal of Human-Computer Interaction, ISSN 1044-7318, EISSN 1532-7590

QC 20250513

Available from: 2025-05-13 Created: 2025-05-13 Last updated: 2025-05-13Bibliographically approved

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