A Generative Co-Design Framework for Healthcare Innovation, presented here, was designed to be adaptable by healthcare innovators and end-users seeking to change a specific healthcare process or system. The importance of involving end-users in this process is critical— individuals living and working within a specific context have a deep understanding of the challenges they face and the intricacies of the environment in which these challenges are embedded. There exists a gap in the literature between the postulated benefits of health innovations, and the actual outcomes of these innovations when deployed in practice, which often fall short of their predicted benefits [24]. In particular, health system transformation via virtual care technology innovations, which is the focus of the DigiComp Kids project, is often undertaken by research teams without adequate attention paid to involvement of end-users in the design of innovations, resulting in a lack of adoption, scale, and spread [24, 25]. The complexity of both the health innovations themselves, as well as the environmental context in which they are implemented, results in interdependent human, socioeconomic, cultural, and technological factors that influence the outcomes of health innovation implementation [24].
These complexities have important implications for the implementation effectiveness of newly-developed health innovations, as relationships between humans and their contextual environment into which the innovation is introduced serve as mediating factors in how effective, acceptable, and usable those innovations are found to be [24, 26, 27]. Therefore, health innovations developed with closer attention to real-world concerns of end-users will be more likely to be usable and sustainable by clinicians, families, and patients, for improving or maintaining health [24].
A Generative Co-Design Framework for Healthcare Innovation is divided into seven steps within three stages— 1) Pre-Design, consisting of ‘Contextual Inquiry’ and ‘Preparation & Training’; 2) Co-Design, including ‘Framing the Issue’, ‘Generative Design’ and ‘Sharing Ideas’; and 3) Post-Design, consisting of ‘Data Analysis’ and ‘Requirements Translation’. Each stage is presented as a summary of activities and an example of how the stage was operationalized in the DigiComp Kids project. Figure 1 contains a summary of stages and their flow.
Pre-design
Summary
The Pre-Design phase of the Generative Co-Design Framework for Healthcare Innovation includes the Contextual Inquiry (Step 1), and Preparation (Step 2). Contextual Inquiry aims to help the research team familiarize themselves with the current state, including the usual practices and processes of the healthcare setting in which co-design is to be implemented. Contextual inquiry may include employing ethnographic research methods such as observing the practice setting, including professionals within the setting and their workflows; conducting informational interviews to gain an understanding of end-user current challenges; or value stream mapping/workflow mapping with healthcare practitioners within the practice setting [28]. Shared team understanding of the current state is crucial for a productive co-design experience, and as such, even teams intimately familiar with the practice setting may wish to employ an abbreviated observational field experience, as appropriate. Next, Preparation aims to help future co-design participants and facilitators become acquainted with the project and begin to build rapport as a team. The Preparation phase may include the development and distribution of informational materials related to the project to future co-design participants and recruiting co-design session facilitators to help with co-design activities. Additionally, if co-design will be conducted virtually, testing the virtual system with future co-design participants will ensure connectivity and audiovisual issues are addressed before the co-design sessions are to take place, avoiding delays and frustrations during these sessions. Finally, regular group communication from the research team to co-design participants with informational materials and updates on preparations for co-design may help to build group engagement.
DigiComp Kids operationalization: pre-design
Step 1
During the Pre-Design phase of DigiComp Kids Co-Design, the lead author (MB) attended outpatient Complex Care Clinic appointments to obtain insights into the day-to-day rituals, habits, and workflows of clinic staff and patients. During these visits, field notes were kept detailing the needs of patients and families coming to clinic, clinic services provided, logistical, personnel, and space requirements for clinic functioning, and potential uses of virtual care technologies to facilitate clinic operations. Our research team (MB, MM, NC, AL) also conducted informal informational interviews with key stakeholders to discuss current state highlights, challenges, and visions for a technology-enabled future. In order to gain an understanding of diverse perspectives, we conducted these consultative meetings with a broad range of individuals, including parents of children with medical complexity, nurses, physicians, allied health professionals, as well as hospital and home-care administrators.
Step 2
In the Preparation phase, the DigiComp Kids research team met to collectively decide on which individuals should be invited to participate in co-design, with the aim of including participants who were representative of a wide variety of stakeholder groups. For the DigiComp Kids project, we selected 11 individuals to participate in our future co-design session who had experience in home and hospital-based care for medically complex children, system navigation, nursing practice support and leadership, as well as parents of medically complex children. After inviting participants to the project, we developed informational materials, including an agenda, a short pre-reading, and an instructional participant guide for the virtual platform to be used for co-design activities. These were distributed to future co-design participants to provide them with a background on the DigiComp Kids project, as well as the specific aims and structure of co-design. We also sent biweekly emails to future co-design participants with updates on project progress to keep them informed as co-design approached. Finally, each individual participant was contacted by the lead author (MB) ahead of the co-design day to gather informed consent for participation in co-design, answer outstanding questions, and conduct a technology test to ensure participants could log on and navigate the virtual platform to be used for co-design without issue.
A facilitation team was selected to assist with conducting synchronous activities during the co-design day, including five small group (CW, KL, CO, SM, CF) and three large group facilitators (MB, NC, MM). All facilitators were technologically savvy and had expertise in either relevant research methods or virtual healthcare design and implementation. Facilitators were briefed on the aims of the DigiComp Kids project and co-design day, and two mock co-design sessions were held with facilitators using the virtual co-design platform to practice the facilitation role before the co-design day.
Co-design
Summary
Steps three, four, and five of the Generative Co-Design Framework for Healthcare Innovation (Fig. 1) comprise the co-design phase, wherein participants and facilitators engage in activities to conceptualize a future state of care. The steps within the co-design phase consist of: Framing the Issue (Step 3), Generative Design Work (Step 4), and Sharing Ideas (Step 5). In the DigiComp Kids project, these steps took place on a single day, however, the timeframe for other projects may vary, according to project needs. Due to the short time frame of a one-day, immersive, co-design event, the preparatory steps taken during pre-design featured prominently during the DigiComp Kids co-design phase. For example, the research team had already developed a deep understanding of the context in which we were working, due to the time spent observing Complex Care Clinic workflows and conducting informational interviews. This context was vital for helping participants to frame the issues discussed during co-design, and to engage deeply with them. Additionally, preparing co-design participants by briefing them on the aims of co-design, providing them with informational materials to become familiar with the DigiComp Kids project, and ensuring technology needed to access the virtual platform was working before attempting to login on Co-Design Day ensured a smooth co-design process.
Co-design work starts by framing the issue to develop a mutual understanding of lived experiences and challenges faced by participants in the current state, as well as a shared vision for the work. Participants willing to share stories of their experiences and obstacles faced in the current state are encouraged to do so, as these stories will help to ground the team in understanding what must change. The research team is encouraged to facilitate conversations with participants around a commitment to improvement (the goals of co-design), and a shared vision for the work (the plan to achieve those goals).
Next, participants and facilitators undertake creative generative design work. Generative techniques aim to both consider explicitly stated needs of participants, as well as to reveal latent needs — those that people are not yet aware of in their conscious minds, and therefore are not always readily expressed in words [29]. The rationale behind using generative techniques in relation to co-design is that if simply asked what is needed from a future healthcare system, participants may respond with solutions that improve current issues, but that do not respond to underlying root causes of problems. Root causes are not always readily identifiable— with generative techniques participants may be guided in stages to express deeper levels of knowledge about their experiences, challenges, and needs [29].
Many options exist for the selection of an appropriate generative technique, and the chosen exercise will depend on the needs of the research team and project. Examples of generative techniques used in co-design include a persona scenario exercise, which is undertaken to develop an understanding of participants’ experiences and challenges, as well as a vision for the future via the creation of an ideal state [13]; storytelling activities facilitated by illustrations and sketches [30]; or a creative prototyping exercise, in which participants create a physical manifestation of a concept or idea. The central concept to generative design is that participants have the opportunity to creatively draw upon their experiences, and using that experience, make something (an artefact) that illustrates a future state. In this way, designers can harness the expertise of participants to both learn about the past, as well as to shape the future.
The artefacts created—be they stories, physical prototypes, illustrations, or other creative outputs—are then shared amongst the larger team in the final step of the Co-Design phase. The creation and sharing of artefacts allows participants to access their experiences in new and creative ways, and reflect on why they chose to create what they did [29]. Within the Sharing Ideas sessions and associated dialogue, the research team should pay attention to similarities and differences of artefacts created by different groups, points of emphasis by participants, and stated priorities for the future state of healthcare. In order to capture the breadth of knowledge shared, it is recommended that these Sharing Ideas sessions are audio-recorded, with participant consent.
DigiComp Kids operationalization: co-design
Step 3
In the co-design phase of the DigiComp Kids project, our Family Partners and two expert clinicians from the Complex Care Team presented accounts of challenges they had encountered in the current state. These stories were shared with the intention of building empathy, understanding the need for clinical change, and cultivating a shared sense of purpose among group members. Next, members of Ontario Health (OTN) presented case scenarios of healthcare solutions that they had previously helped to develop, in order to give examples of success stories and speak to the scope of change required for program implementation. During these case scenarios, technology was emphasized as an enabler of care, but participants were cautioned that implementing a new technology solution would not be sufficient to transform care in most cases, without consideration of context, workflows, and system integration.
Step 4
Subsequently, participants split into small groups, each led by a facilitator, to begin generative design work. For our generative design activity, we selected a persona scenario exercise, where participants worked together to develop a fictitious character that was representative of others ‘like them’. To facilitate this, we grouped participants with similar experiences together (e.g. hospital-based healthcare practitioners), in order to encourage the development of detailed and authentic personas.
A ‘persona’ is a detailed and realistic character that is representative of participants’ stakeholder group [13]. Personas are meant to be fictional, yet draw on the expertise of the people creating them in order to construct a character that is representative of a ‘typical’ end-user for that group [31]. Small group facilitators guided the development of personas using a worksheet (Additional file 3). Guiding questions asked included highlights and challenges of persona’s roles, their comfort levels and experiences with tablets, vital signs devices, and other technology types, and important tasks that they perform in their work with medically complex children.
During scenario work, groups selected an important challenge that their persona encountered, and then imagined a ‘future state’ where care would be delivered differently, to solve that challenge. To distil details of persona-technology interaction within the scenario, as well as requirements for a future state, guiding questions were used to direct group discussion. Specific questions asked by facilitators included “If your persona had remote access to healthcare providers and services, what would be different about the way that care is provided? How would this help to solve the challenge you’ve selected? What technologies are needed to support this change? How would this change the way that information is provided, care is coordinated, families are supported?”. The scenarios constructed by the participant pairs allowed for exploration of how personas might interact with features of a future health system. This exploration of human-system interaction is termed “contextmapping” [29] and is a vital component of designing a healthcare innovation that is suitable for the environment into which it will be implemented [24]. Within DigiComp Kids co-design, facilitators guided participants to define what would be different in the future state, which formed the basis of considerations for innovation design.
Step 5
Finally, participants re-convened in a large group for the Sharing Ideas sessions, where they each presented their persona scenario exercise in turn and spoke to the group about their experiences with the exercise. Facilitators and other group members used a process of appreciative inquiry to highlight the positive aspects of the persona scenario exercises, and to expand on and help to develop these ideas. Questions asked by facilitators and other group members during the audio-taped Sharing Ideas sessions helped presenting participants to highlight points of emphasis and importance, as well as areas of uncertainty encountered during the persona scenario exercise.
Post-design
Summary
The Post-Design phase of the Generative Co-Design Framework is comprised of Step 6, Data Analysis, and Step 7, Requirements Translation. During the Data Analysis phase, the research team sorts and transcribes data, organizes data by distilling themes, and engages in a process of checking in with co-design participants to ensure that the distilled themes match with participant views of relevant and important topics. The aim of data analysis is to capture the most pertinent and significant ideas, which will then be used to form the basis of the healthcare innovation.
In the Requirements Translation phase, the research team uses the themes derived from co-design to decide on priorities for the innovation, plans the innovation based on what can reasonably be achieved, and finally closes the loop with co-design participants and stakeholders to identify plans for moving forward with the innovation. To accomplish this, the team starts by assigning action items to each theme and sub-theme from the co-design findings (i.e. actions that would be required to actualize the theme). For example, if co-design participants emphasized the need for an accessible source of personal health information, including current lab results and care plans, a secure patient portal, compatible with mobile devices, may be designed. Next, the research team reviews necessary action items to decide on innovation priorities by determining: which items already exist (and can be leveraged), which items are infeasible to develop, and which items should move forward to form the basis of the innovation [13]. The final step in co-design is to circle back to co-design participants and stakeholders invested in co-design to inform them of the results of the design process, and the plan of action moving forward.
DigiComp Kids operationalization: post-design
Step 6
Our team selected directed qualitative content analysis as our data analysis technique, and moved through three phases of preparation, organizing, and reporting results [32,33,34]. The lead author (MB) collated and transcribed materials from large group co-design presentations, persona scenario audiotaped presentations and small group worksheets, as well as personal memos and reflections from the co-design process. Next, transcripts were read several times to facilitate a clear understanding of the data and emerging themes, and particular attention was paid to articulations of ‘what must change’ by participants. The lead author (MB) then developed an initial coding framework, based on the research question, which was to investigate the optimal processes, features, and workflows for a virtual care intervention [24]. Definitions were developed for each of these categories, and the first ten pages of the transcript were coded independently by the lead author (MB) and a senior member of the research team with qualitative expertise (NC). These authors then met to compare and refine initial codes, after which time the lead author (MB) continued to code the rest of the transcript. Finally, codes were summarized under the categories of processes, features, and workflows, and themes and sub-themes were distilled from the data. These themes and sub-themes were collated into a summary document and shared with DigiComp Kids co-design participants through a process of member-checking. Participants were asked to reflect on the summarized content of co-design as to whether it ‘fit’ with their interpretation of the day, and to share edits, questions, or memos that came to mind as they read through the summary documents. These additions and edits were incorporated into the final summary co-design findings document.
Step 7
During DigiComp Kids Requirements Translation, the research team met to discuss the co-design findings and steps needed to realize each of the themes. Next, the research team communicated with leaders in the hospital, home care, and technology development sectors to identify if there existed tools or technologies that could be leveraged to meet any of the requirements for DigiComp Kids. With this new knowledge, the research team met several more times to design the processes, workflows, and features for DigiComp Kids, based on the requirements articulated by co-design participants and within the constraints of what was possible for the timeline, budget, and scope of work for the project. Co-design participants and healthcare leaders were once again thanked for their contributions to the design of this project, and the final project design was communicated in a news brief.