The evolving process of collaboratively developing a Long Covid service production toolkit – and the expanded outcomes we can deliver

Weeknote 3: After taking on an innovative brief provided by Catalyst and the National Lottery to create a service design toolkit to help charities and other organisations support those with Long Covid, covid:aid and Hactar facilitated the third of four workshop with Long Covid groups to develop and refine a set of personas and user needs statements, with learnings and discussions evolving and enhancing the project’s direction – as well as the understandings it can bring to the charity and healthcare sectors.

Monday saw the third of four workshops centred around producing a set of personas and user needs statements based on those with Long Covid. These will be based upon the research interviews that we’ve begun conducting alongside the input of groups partaking in the workshops. (Which have included members of LongCovidSOS, Long Covid Support, and Long Covid Kids.)

This is the first time that such a project has been commissioned, meaning that the workshops themselves are providing learnings about how we can better place those for whom services need to be provided at the core of their creation and production. This provides the chance for those with Long Covid not just to ensure that those similarly affected receive the support they deserve, but that we together can create a model for the future which will provide a positive example for the charity and healthcare sectors.

The third workshop was particularly illuminating for this reason, with discussions over the nature of this initial toolkit. It is intended to help charities, healthcare organisations, and others have a better understanding of those with Long Covid. We had produced some ‘early’ work in progress personas and user needs statements, many elements of which rang true for the participants, particularly some of those smaller details and quotes that the interviews were pivotal in providing.

Helpfully, there were other parts which created discussion about whether they should be included. Should there be more mention of symptoms? What are the harmful stereotypes we want to avoid perpetuating? At the end there was also the space to talk about the natural tension between condensing the experiences of many people down into personas which need to feel just as real, and the delicacy of asking people to describe their experiences in an interview when they may feel drained from having constantly advocated for themselves and others over a long period.

These aren’t things that should be cast aside as we finalise our toolkit, so we are now thinking about how to present these findings to inform and shape not just future projects like this, but also how the toolkit can be deployed and updated. It was always intended to be updated as our understanding of Long Covid evolves, and it will be beneficial to think about how we maintain the open and collaborative nature of the workshop – and ensure the results are infused with that same positive and participatory spirit.

Ahead of the final workshop we are conducting more interviews to further build and shape our toolkit, which have already shown the diverse variety of experiences – not surprising when those with Long Covid have reported more than 200 symptoms across 10 organ systems, and something which in itself will be crucial for charities, healthcare organisations, and others to understand. This project feels ever more important with each workshop, and with that in mind we are hopeful that its outcomes – which will extend beyond the toolkit itself – will be beneficial to a wider array of audiences that may initially have been expected.

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