Transformative research is a broad and loosely connected family of research disciplines and approaches, with the explicit normative ambition to fundamentally question the status quo, change the dominant structures, and support just sustainability transitions by working collaboratively with society. When engaging in such science-practice collaborations for transformative change in society, researchers experience ethical dilemmas. Amongst others, they must decide, what is worthwhile to be researched, whose reality is privileged, and whose knowledge is included. Yet, current institutionalised ethical standards, which largely follow the tradition of medical ethics, are insufficient to guide transformative researchers in navigating such dilemmas. In addressing this vacuum, the research community has started to develop peer guidance on what constitutes morally good behaviour. These formal and informal guidelines offer a repertoire to explain and justify positions and decisions. However, they are only helpful when they have become a part of researchers’ practical knowledge ‘in situ’. By focusing on situated research practices, the article addresses the need to develop an attitude of leaning into the uncertainty around what morally good behaviour constitutes. It also highlights the significance of combining this attitude with a critical reflexive practice both individually and collaboratively for answering questions around ‘how to’ as well as ‘what is the right thing to do’. Using a collaborative autoethnographic approach, the authors of this paper share their own ethical dilemmas in doing transformative research, discuss those, and relate them to a practical heuristic encompassing axiological, ontological, and epistemological considerations. The aim is to support building practical wisdom for the broader research community about how to navigate ethical questions arising in transformative research practice.

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Background: Diverse knowledge and ways of thinking are claimed to be important when involving stakeholders such as patients, care professionals, and care managers in a generative co-design (GCD) process. However, this claim is rather general and has not been operationalized; therefore, the influence of various stakeholders on the GCD process has not been empirically tested.

Objective: In this study, we aimed to take the first step in assessing stakeholder diversity by formulating a procedure to assemble a group of diverse stakeholders and test its influence in a GCD process.

Methods: To test the procedure and assess its influence on the GCD process, a case was selected involving a foundation that planned to develop a serious game to help people with cancer return to work. The procedure for assembling a stakeholder group involves snowball sampling and individual interviews, leading to the formation of 2 groups of stakeholders. Thirteen people were identified through snowball sampling, and they were briefly interviewed to assess their knowledge, inference experience, and communication skills. Two diverse stakeholder groups were formed, with one more potent than the other. The influence of both stakeholder groups on the GCD process was qualitatively assessed by comparing the knowledge output and related knowledge processing in 2 identical GCD workshops.

Results: Our hypothesis on diverse stakeholders was confirmed, although it also appeared that merely assessing the professional background of stakeholders was not sufficient to reach the full potential of the GCD process. The more potently diverse group had a stronger influence on knowledge output and knowledge processing, resulting in a more comprehensive problem definition and more precisely described solutions. In the less potently diverse group, none of the stakeholders had experience with abduction-2 inferencing, and this did not emerge in the GCD process, suggesting that at least one stakeholder should have previous abduction-2 experience.

Conclusions: A procedure to assemble a stakeholder group with specific criteria to assess the diversity of knowledge, ways of thinking, and communication can improve the potential of the GCD process and the resulting digital health.@en

At the age of fourteen, Arthur Anderson, has trouble breathing. His mom takes him to the hospital. Soon after being diagnosed with a terrible life threatening disease, he discovers he faces far worse battles with darkness and demons. As this continues to torment him, Arthur encounters wise teachers.They show Arthur a path of light through the darkness, but this is not just any path. This path leads him to ask fundamental questions about life, the universe, everything. The wise teachers bestow upon him a terrible quest born from ancient secrets.@en

Purpose: Participatory design (PD) is a collective creative design process involving designers and nondesigners. There is limited reporting on the experience of using PD for adolescent and young adult (AYA) care. This study summarizes lessons from employing PD to develop care for AYAs with cancer. Methods: A qualitative multiple-case study method was conducted of three PD processes addressing food (FfC), intimacy and sexuality (I&S), and integrative medicine (IM) in caring for AYAs with cancer. Results: Local key stakeholders, who were exposed to a problem and had not been successful at solving it individually, were recruited to ‘‘dream’’ together. Through this synergy, a shared understanding of the problem and a joint mission emerged to find a solution. PD tools were used to develop a problem definition. An open mind and explorative research helped to understand the problems, and stakeholders were managed such that idea-sharing and learning were enabled. Designers translated ideas into prototypes. The PD process was prolonged due to the hierarchical hospital environment, business considerations, and additionally required evidence. The FfC program produced an effective new food service for the whole hospital. The I&S initiative developed a podcast, two articles, and a prototype website. The IM project developed a pilot study. Conclusions: For a PD process to successfully develop care for AYAs, one needs to use designers and skilled people, PD tools, and an open-ended approach to visualize and materialize new forms of care. Furthermore, recruitment and facilitation techniques help leverage knowledge and create a synergy in a democratic environment between stakeholders.

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Background: Generative participatory design (PD) may help in developing electronic health (eHealth) interventions. PD is characterized by the involvement of all stakeholders in creative activities. This is different from the traditional user-centered design, where users are less involved. When looking at PD from a research through design perspective, it is important to summarize the reasons for choosing a certain form of generative PD to further develop its methodology. However, the scientific literature is currently unclear about which forms of PD are used to develop eHealth and which arguments are used to substantiate the decision to use a certain form of generative PD.

Objective: This study aimed to explore the reporting and substantiation of generative PD methodologies in empirical eHealth studies published in scientific journals to further develop PD methodology in the field of eHealth.

Methods: A systematic literature review following the Cochrane guidelines was conducted in several databases (EMBASE, MEDLINE Ovid, Web of Science, and CINAHL EBSCOhost). Data were extracted on the recruitment and management of stakeholders, the use of tools, and the use of outcome measures.

Results: Of the 3131 studies initially identified, 69 were selected for qualitative synthesis. The reporting was very variable, depending to a large extent on whether the study stated that reporting on the PD process was a major aim. The different levels of reporting and substantiation of the choices of a recruitment strategy, stakeholder management, and tools and outcome measures are presented. Only a few authors explicitly used arguments directly related to PD guiding principles such as democratic, mutual learning, tacit and latent knowledge, and collective creativity. Even though PD principles were not always explicitly discussed in the method descriptions of the studies, they were implicitly present, mostly in the descriptions of the use of PD tools. The arguments used to substantiate the choices made in stakeholder management, PD tools, and the type of outcome measures adopted point to the involvement of PD principles.

Conclusions: Studies that have used a PD research methodology to develop eHealth primarily substantiate the choice of tools made and much less the use of stakeholders and outcome measures.@en

During the coronavirus disease (COVID-19) pandemic, cardiologists have attempted to minimize risks to their patients by using telehealth to provide continuing care. Rapid implementation of video consultations in outpatient clinics for patients with heart disease can be challenging. We employed a design thinking tool called a customer journey to explore challenges and opportunities when using video communication software in the cardiology department of a regional hospital. Interviews were conducted with 5 patients with implanted devices, a nurse, an information technology manager and two cardiologists. Three lessons were identified based on these challenges and opportunities. Attention should be given to the ease of use of the technology, the meeting features, and the establishment of the connection between the cardiologist and the patient. Further, facilitating the role of an assistant (or virtual assistant) with the video consultation software who can manage the telehealth process may improve the success of video consultations. Employing design thinking to implement video consultations in cardiology and to further implement telehealth is crucial to build a resilient health care system that can address urgent needs beyond the COVID-19 pandemic.@en