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Co-design goals

The goal of co-design is to discover the ways that people engage with their healthcare and better understand the challenges, barriers and successes in this process, and the contexts for which they occur.

Questions to explore could be:

• What ways have you engaged in healthcare?
  • For example: Tele-health, going to the pharmacy, talk to your counsellor or therapist over the phone
• What were your goals for engaging in healthcare?
  • Filling prescriptions
  • Medical emergency
  • Mental health
  • Continuing care
• Who are the people or groups in your circle of healthcare?
• How did you prepare for your visit, and what was the follow-up like?
• What role does technology play in their healthcare?
• What role would personalization play in their process?

Goal of Round One of co-design: Healthcare in general

The scope of Round One of co-design is to solicit experiences from engaging in healthcare in general — not just virtual healthcare scenarios. This broad scope is to help the project explore and understand the issues that Canadians experience in their contexts before focusing on specific virtual healthcare issues in subsequent rounds of co-design. Expanding the parameters can also help reveal gaps in understanding, reveal unspoken issues, and challenge existing bias.

Also see: "Virtual health COVID response and guideline scope of this project" on Inclusive Virtual Healthcare Guidelines.

Approach of Round One of co-design

To move toward the goal of discovering the ways individuals engage with their healthcare, a storytelling approach was used for round one of co-design. By using different tools, mediums, and modalities co-designers had the opportunity to share their experiences, and express their aspirations and challenges engaging in their healthcare.

The stories generated helped us understand:

• successes — what is working, so those aspects of their personal healthcare system can be guarded, expressed, and advocated for.
• challenges and barriers — whether in-person or virtual, what negatively affected an individual from fully engaging in healthcare
• contexts — what are the circumstances under which successes and barriers exist
• approaches — begin exploring possible approaches and improvements to the system that can alleviate barriers

Inclusive design practice and accessible design

The storytelling activities in Round One support the following:

• • broad geographic, cultural, and social representation
  • understandable vocabulary and language use
  • flexible schedule
  • flexible remote meeting methods (Zoom, Skype, telephone, etc)
  • screen-reader accessible materials
  • participants can create their story using any media they prefer
  • participants can use any language
  • multiple opportunities for check-in and follow-up
  • synchronous and asynchronous participation

Recruitment

Designing the co-design approach with community input

The approach and form a co-design takes are unique to every project, each cycle within a project, and sometimes the groups / individuals within a project cycle. Part of the practice of inclusive co-design includes consultation with potential co-designers and the communities that support them to create the co-design approach that best meets their unique needs. These consultations can be considered cycles of information gathering and sharing to help build “space” where co-design can take place.

Creating the co-design approach and accompanying materials is not a linear process. In inclusive practices consulting with individuals and communities who contribute to projects helps inform approaches we can take to create the co-design activities. As inclusive designers we leave the parameters of the project goals as flexible as possible to allow for input from communities and potential design participants throughout the co-design process. The reason is to identify the ways diverse voices want to be included in the process, mitigate assumptions that can be generated by researchers and designers, identify any gaps in a project's initial goals, and allow goals to evolve as we learn new information. Having individuals and communities contribute to how they will participate and what they will participate in (fundamentally expressing needs and preferences) is a way to create authentic inclusivity and maintain retention in a co-design process.

Recruiting co-designers

The goal of recruiting co-designers is to bring in the unique perspectives of those who are at risk of being excluded by the trend toward virtual healthcare. Connecting with individuals and making space to express their healthcare stories will help the project better understand broader issues individuals face when accessing healthcare in Canada.

In the recruitment process, individuals and organizations were asked for their personal needs and preferences so the co-design process and materials can better suit their needs. Organizations were relied upon to provide insight, support, and trust- building with their community members.

Candidates and interested organizations helped inform:

• how best to connect and engage with their members
  • e., synchronous, or asynchronous approaches?
• methods for distribution
  • mail kits to members? synchronous meeting? pick-up at a location?
• preferred modalities, mediums, and tools
  • write, draw, video, audio, online stories
• how best to collect stories once they are completed
  • mail, upload, collect at a location
• appropriate forms of compensation / honorarium

In considering who to approach, the project team made a conscious effort to seek input from outside the IDRC community as a way of gathering a wide perspective, and not just from those who have been introduced to inclusive design practices. To find participants with different needs, contexts, and perspectives, many different organizations across Canada were considered.

Reflections

• COVID-19 policies and safeguarding meant that the project team had to rely on technology approaches to reaching people who may have been excluded from healthcare because of technology access. Thus, creating a challenge in reaching the people that are at highest risk of being excluded from virtual practices, and those the project is more interested in collaborating with.
• Cold calling / unsolicited emailing of organizations and individuals outside of the IDRC community resulted in a low response rate and is likely compounded by the complexities of priority caused by an ongoing global pandemic.
• Organizations have little experience with early involvement in the creation of the co-design process. There are few details fleshed out which led to some confusion about what we were asking for involvement on. The challenge is a need for clarity that cannot be provided when we engage with organizations early in the process.

Asynchronous co-design

Approach

Initially, synchronous approaches to co-design were considered. Synchronous approaches would allow individuals to work together on collaborations and draw inspiration from each other's experiences. This project eventually settled on an asynchronous approach for a few reasons:

• Reduce digital barrier — providing an offline method of contributing to the project
• Provide flexibility in time and space — participants can choose when and where they decide to contribute. Removing the need to attend long meetings or workshops on conferencing platforms.
• OCADU COVID-19 policy restricting in-person gatherings and no mailing of any materials, including checks for payment or printed workbooks.

Materials

Workbook

To support co-designers in telling their story, a storytelling workbook was created to guide participants through the process. The workbook has three activities:

• Activity 1 - identify 3 unique healthcare experiences
• Activity 2 - choose one experience and express a story
• Activity 3 - examine your story and identify barriers and successes encountered

To introduce co-designers to the workbook and the storytelling process, the project team met with participants to explain the workbook, share additional resources, and offer space for questions.

Co-designers were then given 10 days to express a story (or longer if they needed it) and share it with the project team. Optional check-ins with the project team were scheduled every 2 or 3 days to provide an opportunity for co-designers to work with team members and to ask questions.

Participation forms

Several forms required for participation were sent to participants to review, fill out and submit before the intro session. These included informed consent and other important information requests including: if and how participants would like to be given credit for their contributions and if they are open to follow-up contact after handing in the Workbook. An online form application was used (eg. Google Forms, Microsoft Forms).

Links to materials:

• Copy of the storytelling workbook (DOCX format)
• Copy of resources for storytelling (DOCX format)
• Copy of Feelings resource (DOCX format)
• Copy of Healthcare Equity Co-design form (Google Forms online format)

Process of story expression

The core of the asynchronous approach is a “self-contained” workbook intended to be completed within the span of approximately a week. The Workbook by design includes scaffolds and resources to support self-directed activities. When participants complete the workbook, they produce an artifact that includes personal stories of healthcare as well as positive and negative reflections of their healthcare experiences.

The approach includes synchronous touch points including a walkthrough of the Workbook and two scheduled open Zoom meeting hours that are available for participants to connect live with questions if that is their preference. Email is another communication method for any questions.

Three sessions with varying numbers of participants were scheduled with staggered start dates over a period of several weeks. Participants had the flexibility of enrolling in any of the sessions and submitting Workbooks after the suggested due date.

The Workbook contained 3 activities intended to be executed in order (1-3) but flexible enough to change based on participant preference. For example, participants can choose to express their story first (activity 2) followed by activity 1, which includes identifying and outlining a healthcare story along with related feelings and emotions. Participants could then return to their story to supplement any gaps they may perceive after reviewing activity 1. This was explained in the synchronous introduction session.

Participants were offered options of expressing stories in their language of choice and in a method of their choice, including audio recording, video, drawing, offline by phone, etc. All chose to write their stories digitally, and one participant expressed their story and reflections through an email exchange with a facilitator. Several participants wrote in languages other than English. Participants shared back with a facilitator that being able to express their stories in a language of their choice removed a layer of anxiety and allowed them to write more detail and express feelings.

Reflection

Challenging to implement multi modal ways of expression without the medium becoming predominant to the goal of expressing stories of healthcare experiences.

• Used MS Word software and the Google platform
  • MS Word for Workbook (is software with the most advanced accessibility that is most available to people. It has some accessibility built in and interacts with computer and software accessibility settings, and assistive technology. E.g., voice over, screen reader and dictation.) Word allows participants to add their stories and answer any questions directly into the workbook in their language of choice.
  • Google Forms for consent and contributor agreement information / signing.
    • All participants used Forms with little to no support from facilitators
  • Other ways to access consent forms and Workbook can be made available noted in email sent to participants to let us know about their needs and preferences.
  • All participants used Word except for one, used email to share a story. Prompts from facilitator supported the question section of the Workbook.
  • No mailing of any materials

While less generative artifacts were created (less back and forth with a community of co-designers to generate rich stories and design input), more personal insights, and introspection were captured

• Less creative ways of uncovering the details of stories—relied more heavily on the conventions of written storytelling because it was the way the IDRC team could make sure, as much as possible, that the complexities of individual experiences contributed to the design of the guidelines.

Challenges

• Burden of administration — more coordination required to administer different groups
  • scheduling various intro sessions and check-in meetings
  • synchronous recruitment sessions with groups (large and small)
  • tracking all digital forms, workbooks
  • availability over extended time spans to trouble shoot access and preferences
• Lack of social structures / processes — One participant chose not to engage. Would there have been an opportunity in person to support them to tell some of their experience in a way they would be comfortable?

Distilling insights from co-design stories

The goal is to organize experiences, barriers, and successes into guidelines while maintaining the individuality of the experiences, i.e., extract the essence while maintaining the richness of context and perspective. The rich content is then distilled toward guideline content. To do this we began with a Thematic Sort followed by a detailed Category Sort for each story. The next step included a synthesis of the Category Sort under guideline headings informed by the Thematic and Category sorting exercises.

How stories were distilled in order of execution:

1. Thematic sort
2. Category sort based on needs, virtual health approaches and software solutions
3. Content extrapolation
1. decided to move from sort to extrapolation ahead of another co-design cycle due to constraints including time and access.
2. IDRC team of researchers, designers, accessibility experts put their co-design hats on and extrapolated from the synthesis to create initial content for guidelines.
4. Content sort
1. Second sort prompted by theme overlap and need to give more structure to the content.