Managing dyspepsia and other gut health symptoms

We engaged patient advocates, general practitioners (GPs), and GIs in interviews and small group discussions to hear more about their experiences.

Interviews and discussions were done over Zoom and recorded for later reference during the design process. Notes were taken “live” during the Zoom sessions, using structured templates to assist with managing the data.

Interviews uncovered insights into the following categories:

• participants’ thoughts as they were being referred / referring to a GI, or when receiving a referral (for emotional insight)
• who they contacted during this process (to reveal systemic actors)
• what they spoke with people about (to understand more about their needs)
• what would have made it better (to help identify opportunities to improve)

Notes and recordings were reviewed individually by Ashleigh and myself, before we came together to identify themes and insights in the above categories. Findings were visualized into general process diagrams (see below), then used to facilitate further discussion among patient-GI and patient-GP stakeholder groups.

The group discussions used the process visuals to center discussion around:

• What qualities of a resource matter most to them
• What impact would the ideal resource have?
• What resources would they want to use and how would they use them

For each of the stakeholder groups interviewed, we generated journey maps to assist with our understanding and analytical process. These artefacts outline the journey steps, some of the thoughts they might have, what resources they currently use, and some of the themes in the discussions. See below for the GI journey map.

To further understand how patient and providers interact with each other, I combined all 3 experience maps into one synthesis map. The synthesis map (see image below) presents patient stories crafted from interview data alongside journey steps and recommendations for developing educational resources.

This visual was presented to project leadership, to demonstrate the complexity of the journey at a glance, some key themes from interviews and discussions, and opportunities for next steps.

Initially, Ashleigh and I were asked to develop a poster for primary care offices as an educational resource. Ashleigh put together some prototypes, which were then put infront of a group of primary care providers by one of our colleagues. The posters were met with “Why would we put up a poster? What good would it do for us?”

Bringing this feedback back to project leadership allowed us to move forward with additional co-design activities to explore another angle.

One key finding from many of our patient advocates was that the most relief came from being able to manage their own symptoms. One patient advocate found success using a mobile application to record and track their diet, but it was not dyspepsia specific.

We chose to follow this lead and co-design a visual journal for patients to track their gut health symptoms. We also continued to develop the poster prototype, as part of a package of materials.

Using peer-reviewed and grey literature, Ashleigh and I identified some possible components of the journal, Putting together some possible methods for patients to input data. See some of the iterations we came up with below.

A challenge with the co-design was having participants interact with the content in a virtual environment. In response to this challenge, we made the virtual co-design session two stages:

Stage 1 was held over Zoom and we used miro to present our prototypes to multidisciplinary groups of participants to:

1. Identify which prototypes they preferred for each component of the journal
2. Provide feedback on the use of discrete (i.e. 1 cup) vs relative (e.g. fist-sized) portions
3. Give their feedback and suggest next steps for refining the prototypes

Stage 2 was conducted via email. I sent each of the co-design participants a completed draft of the journal, built using the componenets selected during the Zoom call. Participants completed the survey after having reviewed the completed journal.

Feedback from both stages indicated that icons needed to be more clear, wording needed to be less judgemental (e.g. “too much” should be changed to “extreme”) and portion sizes were key.

After we completed the virtual co-design sessions, I moved on to a new position and was no longer a part of the journal development. Ashleigh, however, continued to work on the prototype. She revised icons, rewrote content and met with additional subject matter experts to get feedback. Utlimately she added extra pages to the journal that would help users reflect on their journalling and identify what might trigger their gut health symptoms.

Ashleigh also continued to develop the poster into an incredibly visual poster that played on cave-diving and deep sea diving as metaphor for unecessary exams.

Find the completed journal on the Alberta PLP website here, and the posters here and here.