DOI: https://doi.org/https://doi.org/10.57187/4775
Healthcare providers are increasingly adopting patient-centred care models that prioritise patients’ decisional autonomy. Advance Care Planning (ACP) helps preserve patient autonomy when patients can no longer make decisions [1]. ACP is defined as “the ability to enable individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and healthcare providers, and to record and review these preferences if appropriate” [2]. The Swiss government has implemented a National Task Force to strengthen ACP in Switzerland [3]. The Task Force published a national roadmap including recommendations to improve accessibility, equity and quality standards for Advance Directives (AD) [4]. Advance Directives are a optional but central component of ACP. They define a patient’s medical preferences in formal documentation [5]. In Switzerland, Advance Directives are anchored in the Civil Code and are binding for healthcare professionals (HCP). In other countries, the legal status of Advance Directives may differ. Advance Directives help HCPs deliver care aligned with the wishes of incapacitated patients [6] and reduce stress for surrogate decision-makers acting on the patient’s behalf [7]. For Advance Directives to be effective, they must be accompanied by qualitative communication between patients, HCPs and surrogate decision-makers within an ongoing, participatory ACP process – ideally supported and guided by professionally trained ACP facilitators [2, 7]. A deep understanding of patients’ preferences – beyond what is documented – increases the likelihood that their wishes will be honoured, even in unforeseen situations [8].
Drafting an AD is recommended for all citizens with decision-making capacity, regardless of age or health status [9–11]. Nevertheless, despite widespread awareness and approval of Advance Directives [12], only one-fifth of the Swiss population has completed this important document [13, 14]. Addressing this shortfall, the Swiss national ACP roadmap underscores the need for innovative solutions, explicitly calling for the development of digital applications [4]. While various online forms for AD creation exist in Switzerland [15], to the best of our knowledge there are no mobile applications available for the public to complete an AD. Mobile health applications (mHealth apps) are a promising technology for improving AD completion rates [16]. They offer scalable solutions that personalise the AD drafting process and can help with periodic document revision. However, an international review of existing ACP apps identified shortcomings in both content quality and user-friendliness [16].
The goal of this study was to develop a user-friendly mobile application for AD creation. Effective AD app development must be grounded in strong ACP evidence and prioritise usability [16], which is dependent on user satisfaction [17]. We therefore used a scientifically established method that promotes collaboration between researchers and stakeholders: Participatory Action Research (PAR) [18]. This paper provides in-depth knowledge of the development and testing process of the free mobile application “iDecide”. The primary aim was to ensure optimal usability and end-user satisfaction with the app.
The PAR methodology used in this study is a community-based, action-driven research approach pursuing practical solutions for issues of pressing concern [18, 19]. By involving participants in research, PAR can increase the social validity of findings [20]. It further allows for the continuous iteration and optimisation needed for software development [21, 22]. PAR operates in consecutive research cycles, bridging theory and practice. Each cycle begins with an “observation and reflection” step, followed by the “problem definition” and a resulting “action”, which is then researched in the next cycle (figure 1a).
Figure 1a: The PAR Cycle: Participatory Action Research (PAR) is organised in cycles combining theory (Observation and Reflection) and practice (Problem definition and Action). b: Application of PAR to iDecide development. Four PAR cycles were conducted to create an evidence-based ACP mobile application for AD drafting. Each cycle consisted of methods for information processing, stakeholder involvement and of technological considerations, followed by a resulting action.
The “observation and reflection” step was divided into three categories relevant to digital technology development: a) Information processing gathered evidence from literature and findings from previous cycles, b) Stakeholder involvement identified how to engage target groups throughout the development process and c) Technological considerations evaluated tech-related challenges and constraints for the next development steps. Four PAR cycles were conducted to transform the iDecide app from an early-stage idea into an evidence-based final product (figure 1b): 1) Literature research and comparable software analysis, 2) App concept development and refinement, 3) Prototype development and testing, and 4) Product version and public app launch. The methods of each PAR cycle are detailed below (figure 2). The in-depth methodology and analysis of the survey studies conducted in cycles 3 and 4 are available in the appendix.
Figure 2Overview table of observation and reflection methods across PAR cycles. Summary of methods for information processing, stakeholder involvement and technological considerations used in each PAR cycle.
The study was conducted and supervised by an Action Group consisting of a palliative medicine expert (SE), a communication expert (SJF), a medical doctor (AvS) and a medical graduate (RR). The group collaborated with patient representatives, nursing experts, intensive care unit doctors and legal experts throughout the study.
The ethics commission of Bern canton reviewed the project and determined that it does not fall within the scope of the Swiss Human Research Act (HFG). Therefore, ethical approval was not required for its conduct. Reference: ID Req-2025-00035.
A scoping literature search was conducted on ACP and Advance Directives, their implementation in Switzerland and the use of eHealth and mHealth solutions to support them, using various combinations of search terms on PubMed and Google Scholar. The detailed search strategy is provided in the appendix. FMH-AD comprehensibility study. A study by our institute [23] evaluated the comprehensibility of the AD of the Swiss Medical Association (FMH-AD short version) revised in 2022 [24]. While highlighting areas for improvement, the AD showed good overall comprehensibility. It therefore served as a foundation for this project.
Stakeholder identification. Three main stakeholder groups were identified. The app’s primary addressees are its target users, comprising all individuals with decision-making capacity in Switzerland, as drafting an AD is recommended for every person [9–11]. The second target group includes healthcare professionals who advise patients on Advance Directives and are responsible for their implementation. The third group, legal experts, reviews the digital AD’s compliance with legal requirements.
A literature and online search was conducted to identify international ACP and AD creation software. Google and Apple app stores were searched for mobile apps offering ACP or AD services in Switzerland.
The findings from cycle 1 guided the development of the iDecide app concept. The Action Group evaluated the concept for compatibility with key ACP requirements and its effectiveness in addressing identified barriers to AD implementation.
Stakeholder feedback group. In March 2024, the app concept was presented to a feedback group with relevant stakeholders (patient representative; physician; experts in palliative care, nursing and communication). Members provided feedback on the app concept in a meeting and an online survey, focusing on usability, navigation and data safety.Legal validation. To ensure the legal validity of the planned digital AD format, a summary of the app concept focusing on legal aspects was reviewed by a private law professor specialised in Swiss family and medical law (Prof. Regina E. Aebi-Müller).Consultation with FMH representatives. As Switzerland’s main physicians’ association, efforts were undertaken to streamline the app with FMH objectives. In a meeting, FMH AD experts provided insights on legal challenges, technical difficulties and lessons learned from the 2022FMH-AD form revision [25].
The Action Group evaluated options for secure storage and sharing of Advance Directives within the app. Because of data safety concerns with online data storage, an offline solution using a QR code was further investigated.
Based on the refined app concept, a prototype app was developed. The prototype underwent rigorous testing by the Action Group to ensure all intended functions were properly working and to detect software bugs.
Prototype version survey. An online survey was conducted to assess the prototype. Participants were recruited via a flyer explaining the iDecide app and providing access through Apple’s TestFlight beta-testing environment. The survey was informed by the validated Mobile App Rating Scale (MARS) [26]. The survey evaluated the prototype’s user-friendliness, the quality of educational information and its alignment with ACP goals, such as facilitating the AD drafting process and raising awareness about ACP. Detailed survey methodology and results are available in the “Prototype Survey Report” in the appendix.
Feedback button. Test users could directly report app issues and suggestions via a feedback button accessible on all main module pages.
The prototype was limited to iOS devices due to resource constraints. A cross-platform framework (iOS and Android) was chosen for the product version to ensure wider accessibility.
User feedback informed the development of the product version.The Action Group tested and finalised the product version for a public user test, which began in October 2024.
Product version survey. To address low participation rates in the prototype survey of cycle 3, a slightly shortened survey was drafted to evaluate the product version. The survey, conducted in German, consisted of 14 statements in the 5-point Likert scale format and 5 free-text questions. It was divided into the following sections: User-friendliness, educational information quality, concordance with ACP goals and user demographics (age category, sex, highest educational level attained and current occupation). Participants for the product version survey were primarily approached in person during the Bernese City Festival on End-of-Life Communication (October 2024) through flyer distribution and additional participants recruited within the author’s personal network. Detailed survey methodology and results are available in the “Product Version Survey Report” in the appendix.
The product version had to undergo review by Apple and Google to be accepted for public distribution.
Large language models were used for language and grammar editing within the article (ChatGPT 4o) and to assist with R code scripting for graph generation (Claude-Sonnet 3.5). All AI-assisted contributions were carefully reviewed by the authors, who assume full responsibility for the publication’s content.
The following section summarises key findings from each PAR cycle and the actions taken as a result (figure 3).
Figure 3Overview table of key findings and resulting actions across PAR cycles.
Barriers to AD implementation in Switzerland. The literature search identified barriers to comprehensive AD implementation in Switzerland including patient engagement difficulties, AD template variety, document accessibility issues and avoidance of ACP discussions by patients and HCPs.
Engagement. Reluctance to create an AD might stem from heavily text-based processes underlying most AD tools [27] and limited consideration of AD benefits in young and healthy individuals. Technology and gamification are suggested solutions to make ACP processes more interactive and engaging [28].
AD template variety. In Switzerland, numerous AD templates exist [15], offering patients many options but complicating standardisation and making AD adherence challenging for HCPs [7].
Accessibility. A major obstacle to AD implementation is limited document accessibility in critical situations [7]. Providing solutions to access AD information is therefore an organisational quality indicator of AD tools [9, 11]. Advance Directives should be accessible across institutions and easily shared with surrogate decision-makers and HCPs.
Starting ACP discussions. Drafting an AD should involve discussions with surrogate decision-makers, loved ones and HCPs [4, 29]. Such discussions help surrogates represent patient wishes better [30] and provide valuable guidance for HCPs [7]. Including communication elements in ACP interventions increases AD completion rates, and improves concordance between care preferences and delivered care [29]. Resources to initiate discussions and facilitate communication are therefore crucial [7].
FMH-AD comprehensibility study. The study on the revised FMH-AD with patients and physicians [23] delineated three areas for improvement of the current AD template: 1) Patients struggled to differentiate between short-, medium- and long-term incapacitation. 2) Both groups found the organ donation section challenging due to limited explanations of basic concepts, organ preparation measures and eligible organs, relying instead on a link to the website of the Swiss organ transplantation organisation (Swisstransplant) for further details. 3) The “Attitudes to life” section was generally well understood, but patients found the free-text questions challenging to answer and sometimes struggled to see their practical relevance.
Comparable software analysis. The search for similar apps in Switzerland found one app, “Accordons-nous” (“Let’s Agree”), a submodule of the University Hospital of Geneva (HUG) app “Concerto”, which informs users about ACP but limits AD drafting to HUG patients [31]. Various international ACP programs (web- and app-based) were reviewed and relevant findings from their evaluations integrated into the concept. Dupont et al. found that most internationally existing web-based ACP tools had significant shortcomings [32]. Most tools did not fulfil the functions and ACP key elements lists outlined by the authors and only 10% involved end-users in their development.
App concept. An initial app concept was drafted to address AD barriers and meet with the functions and ACP key elements lists described by Dupont et al. [32]. The appendix contains detailed information about iDecide’s compliance with both lists. The app uses a modular design for quick access to the four main AD topics: surrogate decision-maker, attitudes to life, medical treatments and organ donation (figure 4a). Each module includes informational texts and links to external websites. Interactive elements keep users engaged, allow customisation, track progress and enable progress saving. Each module includes a questionnaire for users to state their personal preferences. User input is compiled into a PDF that can be downloaded, shared or printed directly within the app (figure 4b). By signing and dating the physical document, the AD becomes legally binding.
Patient information materials. Educational information texts were developed by RR based on the transtheoretical model of health behaviour change [33] and organised in drop-down menus, portioning content for reading ease. Additionally, a communication guide was integrated to help users discuss their wishes with surrogate decision-makers.
FMH-AD content validity study: Adaptations. The following changes to the FMH-AD template were made based on the study recommendations [23]:
Figure 4a: Screen of the editing menu of the iDecide app, showing the five modules for drafting an AD: (1) Introduction, (2) Surrogate decision maker, (3) Attitudes to life, (4) Medical treatments and (5) Organ donation. Progress is visualised by a progress bar (6) and by completed modules turning green (1, 2). A button (7) allows switching to the Express Version or Standard Version of AD. The navigation bar (8) at the bottom allows users to switch from the editing menu to either the “My AD” section or to the info section providing additional information about the app. b: Screen showing the “My AD” section of the iDecide app. The AD can be viewed as a PDF (1) or as a personalised QR code (2) containing all the information of the AD. Button (3) provides additional information on how to use the QR code. Button (4) allows users to view an imported AD or to import an AD by scanning a QR code. Button (5) allows users to recall an AD. c: Screen of the results of the “Attitudes to life” questionnaire module graphically representing patient values in a spider web (1), based on user valuation of ACP statements. Categories from the graph commencing at the top in a clockwise direction are: quality of life, family/network, treatment of symptoms, independence, life prolongation and cognitive abilities. Button (2) to change answers to ACP statements. Button (3) to omit an answer to each module. Button (4) to show the module’s information again.
Stakeholder feedback group. The feedback group survey indicated strong approval for the app concept; however, it highlighted the critical importance of a robust and transparent data safety concept due to widespread mistrust of digital solutions managing healthcare data.
Legal validation. The consulted law professor confirmed that there were no legal concerns with the app generating a PDF for physical printing and signing. She advised against using a solely digital AD format, as validated digital signatures are not yet widely adopted. Representing the AD as a signed and dated QR code card was also considered not fully compliant with current legal standards. However, such a QR code card can serve as a strong indicator of the person’s presumed wishes, which could prove valuable in time-sensitive clinical decisions.
Data safety concept. The Action Group developed a data safety concept, choosing an offline solution that does not require user registration. Personal data is only saved on users’ phones to give them full control of data handling.
Quick Start with Express Version AD. The Express Version AD offers a 15-minute starting point for hesitant users to engage in ACP. It focuses on appointing a surrogate decision-maker and specifying organ donation preferences. Users are encouraged to later transition to the Standard Version to expand their ACP.
Adaptation of the legal concept. In response to the raised legal concerns about a purely digital AD, the Action Group adopted a hybrid approach. An electronically generated paper-based AD, manually signed by the user, is complemented by a personalised QR code containing the identical information for easy sharing and visualisation. QR codes can store data offline by representing it in a binary matrix. They can be read by most devices without requiring additional software. The QR code serves as a strong indicator of presumed wishes, with its legal value bound to the signed paper-based AD. The app clarifies this to users by repeatedly reminding them that only the hand signed AD is legally binding.
Prototype development. Based on the refined app concept, the development of a prototype began in January 2024. Initially, the software was created for iOS by the volunteer PS.
Feedback button. Users reported functional errors (e.g. questionnaire flaws, QR code scanning issues), suggestions for improved user experience (e.g. font size) and content issues (e.g. text repetitions, information overload).
Prototype survey. Eight users (n = 8) completed the survey, rating the prototype app an average of 4.5 (SD: 0.54, 95% CI: 4.05–4.95) on a 5-star rating system for overall satisfaction. Users indicated a high likelihood of recommending the app. The prototype was rated very user-friendly in terms of ease of use and structure, though navigation and attractiveness could be improved.
Educational content was considered highly understandable, helpful and convincing, though an excess of information content was noted. Users felt the app made AD drafting easier and more appealing while raising awareness of ACP, but less effective for facilitating discussions with loved ones or HCPs. One key suggestion from users was to add educational videos.
Product version development. A professional programmer and physician (RS) was tasked with programming the product version of the app starting in August 2024. The product version incorporated findings from the prototype test, adding whiteboard animation educational videos to all app modules and shortening informational texts.
iDecide was approved for public distribution in October 2024 by Apple and in December 2024 by Google. The product version is freely available for download in the Swiss Play Store and App Store (www.iDecide.ch/download).
Product version survey: Survey results collected between 22 October 2024 and 31 January 2025 are graphically represented in figure 5. Ninety-four (n = 94) users (59.6% female; 59.6% <30 years; 86.2% with a university degree) completed the survey, rating the app an average of 4.69 (SD: 0.57, 95% CI: 4.56–4.81) on a 5-star rating system for overall satisfaction. Users indicated a high likelihood of recommending the app to others. Users rated the app as very user-friendly (ease of use, navigation clarity, entertainment and structure). Educational content was considered highly understandable and helpful. The app was rated as making the AD drafting process easier and more appealing while raising awareness of ACP. Compared to the prototype, users rated the product version as more effective for facilitating ACP discussions with loved ones or HCPs. An analysis of variance (ANOVA) showed no significant age-related differences in ratings for user-friendliness and overall satisfaction. Key suggestions by users included enabling uploads of signed Advance Directives and allowing the selection of multiple substitute decision-makers.
As of January 2025, the 4th PAR development cycle remains ongoing. The ongoing user feedback collected will be used for the future optimisation of iDecide.
Figure 5Distribution and mean responses for the iDecide product version survey (n = 94). The left panel shows the percentage distribution of responses for each survey item on a Likert scale (Strongly Disagree, 1 star, to Strongly Agree, 5 stars). The right panel displays the mean responses for each item, plotted on a spectrum ranging from “--" (Strongly Disagree) to “++” (Strongly Agree) or from 1 star to 5 stars for overall rating.
As a result of the four conducted PAR cycles, we successfully developed iDecide, Switzerland’s first mobile application for the general public to create an AD. User evaluations demonstrated high overall satisfaction and confirmed the app’s user-friendliness, as well as its potential to make AD creation more attractive. The Swiss national ACP roadmap states the need for new ideas and practical solutions to promote ACP [4]. iDecide represents such a solution, being a ready-to-use application freely available to everyone. Co-created with users, the app was designed to be engaging, to promote health literacy around AD creation and to support the articulation and communication of care preferences. Ultimately, the app intends to offer the time-saving possibility to create a personalised AD on mobile phones that is easily accessible for patients, surrogates and HCPs.
The PAR approach enabled the systematic identification and improvement of barriers to AD implementation in Switzerland, such as engagement difficulties, AD template variety, document accessibility issues and avoidance of ACP discussions.
iDecide facilitates engagement in the ACP process by leveraging the advantages of mobile applications. Estimates assume that over 95% of the Swiss population possess a smartphone [36], granting them access to download iDecide, consult its contents and draft an AD at no cost. Further, iDecide’s animation videos may make it easier to take the first ACP steps, as interventions using educational videos have been shown to increase ACP knowledge, behavioural intention and AD completion rates [37, 38]. Gamification has been proposed to boost ACP engagement [28]. iDecide’s spider web graphic of users’ “Attitudes to life” aims to apply this concept to value clarification. Survey results support these theoretical considerations, as users reported that the app made it easier and more attractive to engage in AD creation. They were likely to recommend the app, which might propagate engagement through mouth-to-mouth transmission. Results were consistent throughout age groups, indicating user-friendliness spanning all generations.
Variation of AD versions contributes to confusion and difficulty for HCPs to follow a standard procedure [7]. The iDecide AD was therefore based on the FMH-AD, which is used nationwide [24]. Based on recommendations from an FMH-AD comprehensibility study [23], minor adaptations were made to the official format, which appear to be well-received by users. Further discussions with the FMH and HCPs, particularly from emergency and intensive care departments, are needed to promote standardisation.
A main focus of the national roadmap is ensuring document accessibility across institutions, ideally integrating AD into electronic health records [4]. Due to data safety concerns, iDecide was created as an offline solution. That said, iDecide enables easy sharing and access to AD content through a personalised QR code, which can also integrate with healthcare information systems or electronic health records. This makes it a viable solution for both the present and the future, as the electronic health record is not yet widely used. The QR code card allows healthcare providers to quickly access detailed AD information and substitute decision-maker contact details. As with other reference cards, the QR code card must be interpreted with caution, as it alone does not fulfil the legal requirements of an AD. Nonetheless, having AD information readily available on patients’ and relatives’ phones might in itself be a substantial contribution to accessibility, as phones are personalised items, often constantly carried around. At this stage, we cannot yet report on experiences in daily clinical practice.
Survey results indicate that iDecide encourages users to discuss personal preferences with surrogates and HCPs. It provides a communication guide to help users initiate meaningful ACP discussions, improving concordance between care preferences and delivered care [29].
This study’s main strength is the application of PAR methodology, which directly involved users in the research – a fundamental premise in ACP software development [32]. Additionally, the iDecide app operates independently of existing infrastructure and implements a robust data safety concept without online data storage. However, recruiting survey participants through convenience sampling within the app carries a considerable risk of selection bias. Users more engaged with ACP are more likely to participate than those not engaging with the app at all. Additionally, highly educated young individuals were overrepresented in the sample. Furthermore, the perspectives of surrogate decision-makers were not included and the ACP expertise of users was not assessed. iDecide supports users in updating their AD by providing clear instructions on how to replace old versions. Still, the circulation of multiple versions remains a potential limitation of AD. While the app was demonstrated to be user-friendly, user-friendliness alone does not ensure the quality or clinical applicability of an AD; therefore, future studies should examine the qualitative content and real-world implementation of Advance Directives created with iDecide.
To ensure nationwide accessibility, translation from German into the other national languages should soon follow. Additionally, a linking possibility to integrate AD information into healthcare information systems is needed. A joint study with general practitioners (GP) could assess the app’s effectiveness in clinical practice. GPs have limited time to support patients in drafting their AD. iDecide could support them by assisting with informational tasks, allowing GPs to focus on revising the drafted documents for medical clarity and conciseness. Future development should address the overrepresentation of highly educated young users and improve accessibility, particularly for older adults and individuals from diverse educational backgrounds. While apps can support engagement and informational tasks, a complete ACP process still requires discussions with HCPs. Given the importance of such facilitated discussions for effective ACP, it is important to further strengthen the app’s capacity to encourage and support such exchanges. Although tailored to Switzerland’s healthcare and legal context, the app’s decentralised documentation method works on an international scale. App contents can be adapted to other regional, cultural and legal contexts.
The iDecide mobile application for AD complies with the national roadmap for ACP implementation and checklists for ACP digital tool development. It effectively addresses barriers to widespread AD implementation in Switzerland. By encoding the AD as a QR code, it strengthens AD accessibility for surrogate decision-makers and HCPs. Survey results confirm high usability and user satisfaction with the app throughout age groups, consistent with the research aim. iDecide could therefore transform how individuals engage with ACP. In the future, research collaboration and funding will be essential to realise the app’s full potential as a tool empowering people to make their medical wishes known and accessible when needed.
Deidentified raw survey data and app-related usability data supporting the findings of this study was made publicly available on 6 January 2026 via the Zenodo repository (https://doi.org/10.5281/zenodo.18147732). The shared dataset consists of fully anonymised CSV files derived from survey-based usability studies conducted among users of the iDecide advance directive app and includes all data elements necessary to reproduce the analyses reported in the manuscript. No names, contact details or other personally identifiable information are included. The data is available without restriction to all users for purposes such as reanalysis, replication and secondary research and will remain accessible indefinitely, subject to continued hosting by the repository.
The authors would like to thank the countless individuals (patient representatives, healthcare professionals and experts) whose invaluable contributions enabled the realisation of the iDecide project. Special thanks go to Prof. Dr Regina E. Aebi-Müller (RA), University of Lucerne, for her pivotal role in the legal validation of iDecide, Patrick Schneier (PS) for his selfless and voluntary efforts to programme a working prototype, Antoinette von Segesser for countless brainstorming sessions, and Ronaldo Schmied (RS) and Jana Siroka from the FMH.
The programming of the product version app code was funded by the tax-exempt nonprofit association endlich.menschlich, which supports projects to improve communication and quality of care at the end of life. SE is the president of the association and SJF is a member. SE and SJF received a grant for their project “Concurrent Care (CoCa)” from Gesundheitsförderung Schweiz (Health Promotion Switzerland). The funding agencies had no role in the design of the study, collection, analysis and interpretation of data, or in writing the manuscript. The other authors have no relationships or activities to disclose.
All authors have completed and submitted the International Committee of Medical Journal Editors form for disclosure of potential conflicts of interest. No potential conflict of interest related to the content of this manuscript was disclosed.
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The appendix is available in the pdf version of the article at https://doi.org/10.57187/4775.