I’m really pleased to share that a paper from our COPD and smartwatches project has now been published in Healthcare special issue on Remote Interventions in Patients With Chronic Lung and Cardiovascular Diseases. The paper is about how we used participatory co-creation to develop a digital resource (a website and short video) to support smartwatch use in COPD self-management. Chronic Obstructive Pulmonary Disease (COPD) is a long-term respiratory condition that affects breathing and can significantly impact daily activities and quality of life. In this post, I wanted to share a little about how we approached co-creating digital health resources and some reflections about doing co-creation.
Why this research matters
Wearable technologies are increasingly part of everyday life, and their use is becoming more connected with our health and healthcare. But, having a device is not the same as having confidence in how to use it. People are often left unsure how to make the most of them with limited guidance on how to interpret numbers and graphs, how to set goals, or how to avoid the data becoming either meaningless or stressful.
When patients bring wearable data into consultations, healthcare practitioners face a similar issue. The data exists, but the shared understanding and the practical next steps are less clear.
So, the focus of this study was not “do smartwatches work?” It was “what support would make smartwatch use more understandable and usable in everyday life, and how do we build that support in a way that reflects real needs?”. (This built on from my PhD research on people’s experiences of using activity monitors).
Rather than designing a resource for people with COPD, we worked with them, alongside carers and healthcare practitioners. We wanted to make sure the final outputs reflected real concerns, preferences, and everyday contexts, so people would find them useful.
What we created
Together, we co-created the COPD and smartwatches website and a YouTube video for people living with COPD and healthcare practitioners.
How we approached co-creation
We structured the work using the “Three Co’s Framework”: co-define, co-design, and co-refine. This was helpful because it gave structure to keep the project moving, while still allowing participants decide what they wanted.
Co-creation workshops included people with COPD, carers or family members, healthcare practitioners, and researchers. We used a blend of online and face-to-face approaches. The online space was accessible for some people, while face-to-face discussion supported a different kind of group dynamic. What mattered most was creating enough space for participants to say, in plain language, what would be useful and what would not.
Co-define: This phase focused on understanding what help people actually wanted. We explored needs, concerns, and preferences around smartwatch use in day-to-day life with COPD. This stage also shaped basic, but important, decisions about format and tone. For example, whether the output should be a printable leaflet, a website, a video, or a mix.
Co-design: In this phase, the work moved from “what is difficult?” to “what should the resource include, and how should it be presented so that it is usable?”
Co-refine: We then ran one-to-one think-aloud interviews. Participants used draft versions of the website while talking through what they were thinking. People used the website as they normally would, telling us what they liked and didn’t like. Meanwhile, also showing us where they hesitated, what they needed more information on, and what they skipped or missed as they clicked through.
To make sense of all this, we used rapid qualitative analysis to support timely decisions about what to change next. For each participant, they had an updated version of the website based on what the previous participant had said.
What changed because of participant feedback?
One of the most practical outcomes of this approach was that the resource changed in concrete, visible ways. Feedback shaped:
- The clarity of language, including what needed more explanation and what could be simplified
- The information design, including how content was grouped and what needed stronger signposting
- The user journey, including how people moved between patient-facing and practitioner-facing sections
- The tone, including what felt reassuring versus what felt potentially alarming
This is the part of co-creation that can sound obvious until you experience it. It is rarely about one dramatic insight. It is often about small changes that remove confusion, reduce cognitive load, and make the resource feel more grounded.
Reflections on doing participatory research
There were parts of participatory co-creation that are straightforward, but others much tricker to know what to do next. For example, asking people what they wanted and needed in terms of a resource gave lots ideas. But, the more challenging part was narrowing that down and making decisions on what we could actually do. Together, then we could decide what went onto the website, what stays out, what gets simplified, and what needs more nuance, while still balancing different perspectives. People with lived experience, carers, and practitioners can agree on many things, but they can also prioritise differently.
One of the key messages from this paper is that co-creation is not a single method but an ongoing stance. It requires time, flexibility, and a willingness to let go of tidy research plans when participants’ priorities take the work in a different direction. While this can feel uncomfortable, it often leads to outputs that are more grounded and usable. This paper offers a practical example of how participatory methods can be embedded into applied digital health research without becoming overly technical or inaccessible.
Read the full open-access paper here.
Finally, a huge thank you to my co-authors, Nikki Holliday and Louise Sewell, for all your support with this project!
If you have thoughts or any questions feel free to contact me, or share your experiences of co-creation below! I would love to hear about what worked or didn’t work for you!