Digital health can improve access to and quality of health care, lower costs, and provide a personalized experience for patients, but it also raises ethical challenges [1], usability problems [2], and, as seen, few successful implementations [3]. Involving end users in the creation of digital health solutions can minimize usability and accessibility problems [4]. Although co-design has several theoretical virtues, it does not guarantee positive outcomes. A total of 2 systematic literature reviews identified mixed and even negative outcomes, including communication problems, misunderstandings between users and the development team leading to conflicts, higher user expectations, and a negative influence on data quality [5-7]. What factors lead to better results?

For example, there is a great diversity of activities conducted during co-design sessions: interviews, advisory council meetings, focus groups, surveys, deliberative methods [8], and plenary sessions [9]. Gray literature also offers a wide range of techniques for collaborative sessions, problem-solving, and ideation that can be used in co-design [10-12]. How does the type of activity affect outcomes?

Extra time is needed when involving patients in health research [13]. To date, research on co-design in digital health is still seldom described, evaluated, or empirically tested, raising questions about the cost-effectiveness of user contributions compared to the investments required in time, effort, and money [8]. This paper contributes to the body of work on co-design initiatives with a focus on what drives participants—namely, their engagement—in a co-design project, based on a strong theoretical lens on human activity and empirical results provided by the participants themselves.

Co-design in this study aligns with the perspective of Sanders and Stappers [14], which involves users (or potential users) in the development of knowledge, concepts, and idea generation. For us, co-design lies at the intersection of 3 dimensions: design, collaboration, and participation. First, participants engage in “design as a reflective practice,” following Schön [15], to reflect on their situation and contemplate potential solutions to improve it. The second dimension is collaboration, where actors engage in mutual learning [16-20], leveraging each other’s knowledge and experience to better understand the situation and co-create the solution. The third dimension is participation, which involves how actors act, speak, and think [21], and how they may ultimately benefit from their participation beyond the co-design project’s objectives [22]. We perceive participation and collaboration as interrelated dimensions rather than levels on a ladder [23].

Engagements of participants can help understand participation in co-design by providing insights into what motivates or concerns a person to participate (act, speak, or think; see Textbox 1 ). For example, an actor might have concerns about the capability of users with low digital literacy. These engagements affect their participation and their willingness to engage in design as a reflective practice and in mutual learning about the situation. They can influence the potential for collaboration, creativity, and ultimately the innovative, useful, and usable potential of the proposed solution.

Participant engagements in co-design initiatives, particularly in the digital health domain, are crucial but come with inherent challenges. These challenges include the multifaceted nature of digital health implementations, the lack of empirical evaluations [8], and the need for a precise understanding of engagement based on participants’ perspectives and theoretical frameworks.

The concept of engagement is often blurred with involvement [8,24-26] or remains unclear [7,27,28]. In both cases, engagement seems to be defined by how actors were involved in the projects. A total of 3 studies provide concise definitions, positioning engagement as involvement: “actively collaborate” [29]; “partnership, collaboration or consultation” [13]; and engagement type: co-production, co-design, and co-creation [30]. These are extrinsic considerations, not necessarily focusing on the motivations or concerns from the actors’ perspectives.

Jolliff et al [31] used an existing framework proposed by the Patient-Centered Outcomes Research Institute [32], including extrinsic but also intrinsic considerations, such as engagement quality (perceptions of actors) and partners’ outcomes (effects for actors). Peters et al [33] also associated quality of engagement with emotional and cognitive factors.

Some studies report on engagement without referencing co-design or participative design, instead focusing on patient partners [27] or patient and community involvement in research [7,13,29]. While actors were involved in these projects, they were not engaged in the co-creation of the solution, which does not align with our perspective on co-design. Empirical studies focusing on engagement [7,25,27], along with literature reviews on engagement [8,13,26,29], provide insights into factors affecting engagement and offer recommendations based on the results.

Among the problems affecting engagement, power distribution or tokenism (symbolic participation) was reported in all papers except in O’Connor et al [26], whose literature review included only 4 papers discussing co-design. Papers also mentioned:

Papers mentioned positive emotional outcomes for actors (targeted end users), such as increased confidence in their daily lives [8], a sense of pride and accomplishment, feeling empowered, an increased knowledge and skills [8,13]. Most papers conclude with recommendations for future research, including:

There was still a lack of empirical results or insufficient reporting of methodology across all the papers. Most papers did not provide detailed information about the co-design activities, except for reviews of wireframe workshops [7] and a design charrette [25]. Slattery et al [8] noted that the most frequent activities in their review were interviews or advisory councils, which do not explain how actors contributed to the co-creation process.

Despite the critical role of participant engagement in co-design for achieving fruitful outcomes, discussions on engagement remain predominantly focused on extrinsic factors, blurred with involvement, and are poorly empirically described. While the insights are useful for optimizing the co-design process, connecting them to participants’ motivations or concerns from their perspective remains challenging.

In this study, engagement is considered differently, based on what participants found significant from their own perspective, aligned with the course-of-action framework [21]. This article aims to address this gap by providing an intrinsic description of participant engagements in a co-design situation.

This engagement study is embedded in a larger multisite co-design parent project (from May 2017 to June 2018), whose objective was to develop a tool to facilitate the search of resources for caregivers of seniors experiencing loss of autonomy. A complete description of the co-design study protocol is available in Latulippe et al [42], and the results of the approach are presented in 3 articles [43-45].

Data collection was conducted as part of a co-design project aimed at designing a tool to facilitate resource searches for caregivers of seniors experiencing loss of autonomy. A total of 8 co-design sessions (CoDs) were held from May 2017 to June 2018. These sessions were interspersed with 3 advisory committee sessions (ACs) (see Figure 1).

The following describes the CoD workshops and the AC meetings:

The co-design process culminated in the creation of a prototype website with 2 main sections: one for caregivers to search for resources and another for service providers to offer resources. The prototype was the subject of a study based on the triangulation of 3 frameworks in usability and user experience [46].

The parent co-design project received institutional review board approval before the first workshop began (Université Laval #2017‐103, issued April 20, 2017). The initial certificate covered the core workshop activities and brief contextual questionnaires completed by HSSPs and community-organization staff; these questionnaires informed the broader design effort but are not analyzed in this engagement study.

An amendment adding video-recorded participatory observation and postsession self-confrontation interviews was submitted in June 2017 and was approved on July 17, 2017, after CoD1 (May 2017) and CoD2 (early July 2017) had already taken place. Consequently, no postsession interviews were conducted for those 2 early workshops; full data collection commenced with AC1 and CoD3 and continued through AC3 and CoD8. All participants involved in the amended protocol provided written informed consent specific to these additional procedures and received a nominal compensation of CAD $20 (US $16.45). Data were anonymized for this study.

Participants for this study were recruited during the sessions. A caregiver serving on the AC was interviewed twice—immediately after AC1 and again after AC3—to capture how his engagement trajectory evolved over the life of the project. Retaining both interviews enabled a longitudinal within-person analysis consistent with the course-of-action framework; discarding the second interview would have forfeited this analytic leverage.

This co-design project served as the research setting for our study, which aimed to describe the engagements of participants in a cyberhealth co-design project. Data collection occurred in 5 steps (see Textbox 2).

The analysis was conducted in 2 stages by the primary author. The first stage (deductive) involved reconstructing the participants’ course-of-action in the complete chronicle. Engagements and expectations were mostly identified by paraphrasing participants’ statements to clarify the researchers’ understanding, while in some cases, verbatim excerpts were used to stay as close as possible to participants’ experiences.

These documents were then used in the second stage (inductive), conducted using the qualitative and mixed methods analysis software MAXQDA 2020 (VERBI Software). Engagements were organized into emergent themes [47], describing the nature of the engagements.

We subsequently cross-referenced the themes with variables, including participant categories (caregivers, HSSPs, and organizations) and sessions. This step allowed us to generate tables presenting the frequency with each theme. This quantitative analysis was useful for selecting data based on what appeared significant to a larger number of participants, from their perspective, and for maintaining analytic validity by guarding against potential biases when selecting data to present [47].

The co-design project included 74 participants. We collected testimonies from 20 participants, including caregivers (n=9), HSSPs (n=4), and community workers (n=7; see Table 1). We conducted 21 interviews (1 AC participant was interviewed twice).

The AC sessions were conducted entirely in plenary, where participants were invited to express their positions on specific issues where consensus had not been reached during the CoD sessions. All CoD sessions began with a plenary presentation outlining the project, the objectives of the session, and other relevant information. Subsequently, participants were divided into small workshops of 3 to 4 people, each facilitated by a member of the research team and typically focused on a different subcomponent or angle of the session’s main objective, allowing for complementary contributions to the overall session goal.

A distinctive feature of CoD5 was that all small groups worked collaboratively on the same specific task: creating a paper prototype. In contrast, other sessions (CoD1 to CoD4 and CoD6 to CoD8) explored the session’s objective through more diverse or exploratory angles within subgroups. Participants had the freedom to choose their workshops, resulting in subgroups that were sometimes homogeneous and sometimes heterogeneous in terms of participant categories. Activities varied based on the session objectives, the progress of the tool design, and the specific goals of the subgroup workshops. The analysis revealed 3 main themes of participants’ engagements: engagements related to their needs (personal and professional), engagements related to the situation, and engagements related to the design of the tool.

The distribution of engagement was quite similar among caregivers and HSSPs across themes (see Figure 2). However, the engagement of organizations (community workers) was significantly less focused on tool design.

Figure 3 shows that the nature of engagements also varied greatly throughout the project. For instance, engagements related to the design of the tool were more significant during specific sessions (CoD5, CoD7, and CoD8), while they were noticeably less important during other sessions (CoD4, AC2, CoD6, and AC3). A significant majority of the engagements related to the situation involved interaction with others, which is inherent to co-design, as interaction with others is a fundamental characteristic of the process. Figures 2 and 3 suggest that the nature of engagement varied depending on participants’ categories and sessions.

Below are examples of empirical data from each session (see Table 2), including session objectives and the methods and materials. The verbatim excerpts are enclosed in quotation marks.

Our objective was to obtain an intrinsic description of engagement, encompassing what motivates and concerns actors in a co-design situation, from their perspective. The chosen methodology, grounded in a pragmatic paradigm and informed by the course-of-action framework, allowed us to foreground participants’ lived experiences and situated knowledge. This approach privileged perspectives that are often underrepresented in more top-down design processes. By adopting a co-design approach supported by self-confrontation interviews, we were able to access not only what participants said during the sessions but also how they made sense of their own engagement. These perspectives influenced both the iterative refinement of the design and our interpretation of the engagement dynamics.

The results might not appear surprising, yet it seems we are still encountering the same challenges in co-design projects. The contribution of this paper is to emphasize these results with a detailed description of the methodology and empirical data evaluating participant engagement, as recommended by Manafo et al [29] and Slattery et al [8]. This includes describing what was significant in participants’ overall experience, from their perspective. Our analysis highlights that the nature of participants’ engagement during the sessions went far beyond the design of the digital health tool for caregivers, even though that was the reason they were invited to participate. This aspect has not been discussed in other studies.

Among the commonly discussed findings, our study revealed that actors need preparation (personal need) to understand their role, which enhances their sense of relevance and their ability to contribute meaningfully [7,8,27,29,31]. Service providers were also engaged in increasing their knowledge (professional needs) [8,13]. A unique finding was the engagement of community workers, who sought to ensure their distinct concerns—differing from those of HSSPs—were understood. This is particularly relevant in Quebec, where community organizations operate under a model of entrepreneurial governance, with private foundations influencing their mission and work [48]. These engagements related to professional needs eventually led to engagements related to the situation (interaction with others).

Several engagements related to the situation mirrored those identified by Zowghi et al [7]. Unlike common issues of power distribution reported in other studies, our research did not encounter such conflicts between researchers and participants. However, we observed tensions between HSSPs and community workers, particularly during the final session (AC3), highlighting the need for a positive environment, mutual respect [29], and a shared vision [8]. Participants emphasized the importance of having sufficient time to achieve objectives [8,27].

The concept of affordance [49] highlights perceptual cues in the environment that suggest specific interactions. From this perspective, we propose that the activities offered to participants shaped the nature of their engagement in this project. Plenary discussions generally fostered engagements related to personal and professional needs, as well as situational aspects. In contrast, design-centric activities primarily directed engagements toward the tool’s design.

Participants in our study who were more engaged in the tool’s design participated in typical design activities, such as paper prototyping (see Figure 4), mockups, clickable prototypes, and usability testing. These activities, which enhance creativity and direct involvement, acted as affordances by guiding appropriate actions, driving engagement, and directing participation (acting, thinking, or speaking) toward the tool’s design. Effective facilitation of co-design sessions should emphasize design practices [50,51], aligning with best practices in this field, as reviewed by Mosely et al [52]. This approach supports the “designing with” philosophy rather than “designing for,” as suggested by Howard and Somerville [25].

Grasping the essence of engagement is key to understanding participation in co-design, a core element of participatory research. However, the question arises: participation in what, exactly? From a researcher’s viewpoint, participation implies committed involvement in co-designing a product or service. Yet, our findings suggest that participants perceive participation differently, emphasizing the diversity of engagement. This includes concerns, situational considerations, and the mobilization of their participation. In terms of research ethics and co-design, we should consider engagements that prioritize participants’ needs and the situation. Adopting a compassionate stance to meet their expectations allows them to derive benefits from engagements that appear more significant to them. Based on our results, we recommend that researchers and designers using a co-design approach establish conditions that respect the diverse nature of participant engagements. To meet expectations tied to participants’ personal needs and enable them to benefit from their involvement [22], we propose exploring the following avenues (see Textbox 3).

As mentioned earlier, co-design, for us, lies at the intersection of 3 dimensions: design, collaboration, and participation. These dimensions are closely related, resembling a Venn diagram. The tensions between these dimensions will impact the center (co-design). The suggested affordances (A, B, and C) could help balance these tensions (see Figure 5).

Participants varied in each co-design session. Analyzing the engagement of individuals who participated throughout the entire process using the course-of-action framework might yield different results. Comparing our findings with those of continuous participation could enrich the discussion on engagement by exploring the similarities and differences arising from the methodological choice of isolated versus continuous or multiple participation.

In this study, we explored the concept of engagement among 3 categories of potential users—caregivers, HSSPs, and organizations—who participated in a cyberhealth co-design process. We used a robust methodological approach based on the course-of-action framework to document participant engagements, addressing a gap in the scientific literature [8]. Our findings reveal that engagement extends beyond the immediate goals of tool design, encompassing broader concerns and motivations shaped by individual needs and the dynamics of interaction. In my professional co-design practice, I have integrated these recommendations by adopting a compassionate stance that prioritizes participants’ perspectives and by configuring activities as affordances to support meaningful engagement. This approach has consistently led to more inclusive and impactful co-design processes, as evidenced by the quality of participation and the relevance of the outcomes generated. Our analysis highlights the importance of balancing design, collaboration, and participation to address the inherent tensions in co-design projects. Ultimately, this study underscores the value of tailoring co-design practices to respect and leverage the unique contributions of all participants, thereby advancing both the process and outcomes of collaborative innovation.