Digital tools are increasingly being developed as they may have advantages over analog tools. However, digitalization also brings forth hinders and challenges in usability and availability to the public, especially in people with cognitive hinders. Furthermore, development processes of web-based social health care tools are seldom being fully reported. This protocol paper, therefore, brings a positive addition to robust reporting of digitalization processes.

Proactive reflection and discussion of end-of-life (EoL) values and preferences before death is imminent, a process referred to as advance care planning (ACP) [1,2], can help individuals, their significant others (SOs), and health care professionals be better prepared to confront dying and EoL decision-making when that time comes [3]. While such EoL communication has traditionally been seen as the realm of professionals, which is often still the case in Sweden [4-11], there is increasing international recognition of a need for early, proactive, community-based ACP processes [12-16], not least in the wake of the COVID-19 pandemic [17-19].

The body of knowledge on benefits of ACP practice is vast. Systematic reviews [20-22] show that ACP leads to increased quality of life, health care satisfaction, and use of palliative care. ACP has been associated with reduction in futile life-support treatment at the EoL [20,23] and decreased undesirable hospital admissions [20-23]. International studies [24-27] show that large parts of populations, approximately 60% to 90%, are willing to participate in ACP conversations.

Document-based ACP practices have proven controversial [28-30]. Instead, early and proactive ACP approaches—focusing on preparation of individuals, families, and professionals to be able to make the best possible in-the-moment decisions when they later become necessary—are gaining interest [3,13,21,31]. This focus matches the approach to ACP taken in this project, focusing on reflection and conversations on broad EoL issues in the public.

As talking about EoL issues and dying may be unfamiliar and difficult, tools are increasingly used to support such conversations [32,33]. These tools generally aim to facilitate engagement in ACP discussions by supporting individuals and their SOs to reflect on and/or make decisions for future care and treatment with health care professionals [34]. Initiatives to support community-based, non-professionally led ACP conversations on broader EoL topics are less common, but increasingly being developed [14,35,36].

The Swedish DöBra card is a tool to support EoL conversation that was translated and adapted from the US Go Wish card game, developed by palliative care physician Elizabeth Menkin and the nonprofit organization Coda Alliance [37]. Each card contains a statement, based on seminal research [38] on factors considered important at EoL by patients, family, and caregivers. The process of reflecting on, prioritizing, and ranking card statements serves as the basis for a focused discussion on future EoL care goals [39].

Translating and adapting the Go Wish into the DöBra cards was initiated in 2012, in response to the lack of proactive EoL conversations in the Swedish context at the time [40]. This involved an extensive, cocreative process within a project group of community partners. The DöBra cards have been well-received when tested in various groups in Sweden, that is, community-dwelling older adults [40-42]; staff, residents, and family members in residential elder care [43-45]; and among the Indigenous Sámi [46]. The DöBra cards have been publicly available for purchase since 2018 (without any revenues for researchers); our research indicates an appreciated conversation tool that has had an impact in the public [47].

While the original US Go Wish cards are available online on a basic webpage, scientific studies on the digitalization of the Go Wish cards remain scarce. A recent publication reported on the digitalization of a Go Wish-inspired ACP tool [48]. This project takes inspiration from previous work in Belgium, where a digital version of the Flemish Go Wish cards was developed in a larger project that cocreated a dementia-friendly ACP website [49-53].

Web-based tools can have advantages over paper-based or physical tools as they can be accessed online at any time and place, be used at one’s own pace, alone or together with professional or family caregiver over geographical distances, and have potential to reach a wider and more diverse population [54]. Furthermore, web-based tools can include interactive features that allow tailoring to individual needs and preferences [55]. However, limitations highlighted in a systematic review [14] include web-based ACP tools rarely being developed in collaboration with potential end users, that content was not always evidence-based, and tool development was seldom scientifically evaluated. Furthermore, the level of detail in reporting on the development processes varies, and sometimes a clear description of the digital transition is even left out (Dupont et al, unpublished data, February 2026). In this project, the digital ACP tool will be a further adaptation of the robustly researched Swedish DöBra cards [40-47,56], based on the internationally well-studied Go Wish cards [37,39,57-63], to be developed in a cocreative process and evaluated in manners that allow comparison with previous studies [48,49,64].

In this paper, we outline the protocol for a funded participatory action research (PAR) project, as well as report on initial steps taken in the project. The overall aim of the project is to further develop and investigate the promotion of early, proactive EoL conversations by cocreating and testing, together with potential community-based end users, a digital version of an existing ACP conversation tool, the DöBra cards.

Following major grant funding, the project commenced in January 2024 and has overall been carried out according to the protocol, even though some amendments have been made given the participatory nature. In this section, we will report on the initial steps conducted in the project.

Recruitment of community partners involved in cocreation of the tool in the advisory group began in early 2024. A step-wise recruitment strategy was used to avoid recruiting “more of the same.” This strategy resulted in a heterogeneous group (see Figure 2 for an overview of participating organizations). Community partners involved in the previous participatory process translating and adapting the paper-version DöBra cards were first approached, that is, the Swedish Dementia Association and the national retiree organization Pensionärernas riksorganisation; however, involving new representatives from these organizations as the geographical base of the project shifted from the capital area to the northernmost part of the country and as leadership positions had shifted within the organizations. Given that the geographical base of the project constitutes the realm of 2 national minority groups, the Sàmi and the Tornedalians, these groups were approached via their representative organs, that is, the Sàmi parliament and the National Association of Swedish Tornedalians, Tornionlaaksolaiset. In order to gain health care professionals’ input on the project, a registered nurse specialized in dementia care and a nursing aide specialized in education of nursing staff were recruited from nearby municipalities. Striving for heterogeneity in professional input led to recruitment of a death doula, a person offering nonmedical services to dying individuals and their SOs in the final stages of life. Given the ambition to develop a digital tool which would be user-friendly in broad segments of the Swedish public, contact was made with a number of organizations, namely, the Swedish Disability Rights Federation, an organization committed to everybody’s right to self-determination and full participation in society. This is an umbrella organization that wanted to participate with the organizational coordinator as well as 2 representatives from patient organizations: the Swedish Heart and Lung Association and the Swedish Association of the Visually Impaired. These local representatives, in turn, made us aware of the support for older people office in the municipality which works, among other things, with supporting older individuals in managing and using everyday digital platforms. Also, to have perspectives of younger people affected by serious illness, the Young Cancer organization, which works to improve living conditions for young adults living with cancer, was asked to participate. In order to gain perspectives of people not born in Sweden and/or not having Swedish as their first language, the local International Women’s Association Esperanza was approached and asked to participate. Again, with a focus on inclusion and broad perspectives on EoL, a local lesbian, gay, bisexual, transgender/transsexual, queer, and other minority sexual orientations and gender identities organization was approached. Finally, the publishing company selling the paper-version DöBra cards and thus having important insights into how the paper-version cards are being distributed was asked for their interest to participate. All approached parties and individuals initially agreed to participate in the project.

However, during the startup phase, the representative of the lesbian, gay, bisexual, transgender/transsexual, queer, and other minority sexual orientations and gender identities organization and the nursing aide left the advisory group for different personal or organizational reasons. Furthermore, the representatives of the Sàmi Parliament attended the first 2 meetings, but in the second meeting, they communicated a strong wish for the DöBra card statements to be translated and culturally adapted to Sámi settings. This was discussed as a deviating objective from the main project; therefore, the project leader communicated that she envisioned this as a side project that could seek additional funding but not be part of the funded main project. Following this, the Sàmi Parliament representatives left the advisory group. After discussions in subsequent advisory group meetings, the group jointly decided that participation of Sámi representatives was important, and the project leader was given a mandate to try to find other representatives. The Network for Sámi Health, an organization focused on promoting health and equitable care for the Sámi people, was therefore approached and agreed to participate.

Some organizations had double representatives in order to cover for each other, making the total number of advisory group members 16: 13 women and 3 men. Not all members have joined every meeting, which has been held in hybrid form after the first physical meeting in Luleå in April 2024. A deviation from the original plan is that the scientific reference group has been less involved in the cocreation of the digital tool. This is both due to the considerable size of the advisory group which already brings very varied perspectives as well as logistical difficulties in scheduling meetings. Instead, the project leader has met scientific reference group members individually on demand, as well as circulated updates on the project and tool development progress approximately twice a year.

Field testing of the digital tool was initiated in May 2025, and at the submission date of this paper, 42 individuals had started testing. While data from the cocreation process is currently under analysis, data from field testings remains to be analyzed, scientific results publications are expected during 2026-27, and public tool dissemination is planned during fall 2026. From the discussions in the advisory group, a vision of the final digital tool being readily available, free of charge and for anyone to use, has crystalized. Discussions of which platform to use for dissemination are still ongoing, with a focus on already existing websites or platforms that can offer a stable host for the tool and managing necessary updates. The long-term governance of the tool is another important question that is under discussion, in order to facilitate broad public dissemination and ensure that the tool will be readily available.

Dissemination of research results will be conducted at international and national scientific conferences and by publishing peer-reviewed scientific articles in journals. Given that this is a PAR project, much attention will also be paid to popular-science communication, for example, public presentations and (written/oral) communication in the community organizations’ preferred channels.