Table 11 Lessons learned about conducting a co-design workshop between individuals and their healthcare providers

1. Address topics relevant to the design of a data-sharing system.

Participants have their own agendas when participating in a workshop, e.g. specialists spent more time explaining the situation in their clinics and their views of what patients need in general, than expected and often did not respond directly to the question asked.

Plan for participants to take time to explain their situation. This provides more context for their perceptions and expectations of the situation, allows the research team to better understand their needs, and may provide additional and unexpected relevant information.

2. Explain intentions, e.g. explain how to use participants’ feedback

Know your audience - What you see as important to the core purpose of the project may not be relevant for the participants.

Do not overwhelm participants with information, especially at the beginning when their priority is to get settled in and comfortable. Test out your explanation on someone completely unrelated to the project, e.g. a family member or friend, and ask that they point out the confusing or unnecessary details.

3. Encourage participants to produce as much input about their needs and ideas as possible.

Engaging and creative activities were planned based off of research and online “toolkits” available from several difference organizations. Despites attempts to make instructions as straightforward and clear as possible, participants felt the need to clarify several times because the instructions were either too detailed and complicated or not understandable.

• Use other researchers or staff in other fields, e.g. product development, as resources for activity ideas

• Participants may have a different interpretation of the instructions or may miss instructions, in which case it is best to adjust yourself as a researcher to their interpretation instead of trying to correct them as this may be discouraging

4. Create a comfortable and inclusive atmosphere to bring forward honest feedback

We posted signs and reiterated verbally that there are no small or silly comments; all insights and feedback would be welcome. Disagreements were of course welcome but we encouraged respect in the verbal discussions.

Before the workshop, reinforce within your team that this is about the participants’ experiences, not about your own assumptions or preconceived notions of what is happening or, especially, what should happen. Do not take sides if there is a disagreement but encourage participants to explain - ask “why do you feel that way?” or “why do you believe that”.

5. During the joint sessions, ensure that both patient and healthcare provider participants feel comfortable and safe to share their opinions, despite the difference in perceived “authority level”.

We expected to need to reiterate that everyone’s opinion is their own and should be respected. However, possibly due to the less hierarchical cultural structure in Norway, we did not need to reinforce this concept. Participants were respectful and listened without having to be directed.

• Make sure that none of the participating healthcare providers were the clinicians of participating individuals with diabetes.

• During the lunch break between the separate morning and afternoon joint sessions, invite all participants to eat together.

• Suggest ice-breaker activities, within and between groups?

6. Creating an engaging and creative atmosphere

We chose large rooms and posted the three situations that we aimed to understand (self-management, clinical practice and consultations) on wall-sized poster boards as visual aids. These included pictures and space for participants to draw, write and tape their ideas to.

Introduce each situation and allow participants to familiarize themselves with the posters before starting the activities. Allow them time to brainstorm and encourage physical interaction with the visual aid materials. If participants know what is planned, they can mentally prepare themselves for the day, e.g. develop ideas throughout and know what is expected of them.

7. Allow for the participants to drive the conversation and tell the research team what they need and ideas for the systems’ design

Some participants seemed unfamiliar and uncomfortable with suggesting creative solutions for a future system. Instead they wished for us to present prototypes and then form a discussion based off of existing ideas.

• Expect that different participants have had different history with workshop activities and different expectations going into the workshop

• Clarify the expectations of the researchers and participants at the beginning

• Participants could also help to plan the workshop and select activities that their believe will allow them to most accurately and completely share their opinions