Will Roissetter here, stepping in for Connie who is taking a well earned break this week.

This week:

• We have been getting in touch with people to arrange a prioritisation workshop

• Going into more depth with the analysis of the research we have done

• Continuing to work on our technology landscape review

• Had a chat with Dr Gyles Morrison who has done work in the area we are interested in

• Some of the things we’re reading at the moment

Following on from the research and themes we have conducted and collected so far, we are going to run a workshop bringing people together with a range of skills and experiences related to sickle cell disease and delivering services within the NHS.

The purpose of this collaborative session is:

• To iterate and build a shared understanding of what we have learnt through our discovery work so far

• To crowdsource a multidisciplinary view of what might be useful and viable digital interventions

• To prioritise what is worth testing in a second phase of work

Last week we published the first iteration of our discovery report, there is still work for us to do to complete it and one of those things is to go through our user research comprehensively.

We have collected a lot of data and we have managed to go over each interview and code themes and collect quotes, but we haven’t gone into as much depth as we would like. So this week we have spent time tidying up our research board (which we will publish in due course) and looking at the experience maps we have created with a view to creating some user needs at each stage of a sickle cell crisis. This research will be used to help create the final report, as well as give us the evidence we need to base our prioritisation workshop off of.

Connie covered this in last week’s weeknotes and we have been continuing the review this week. Not much to report further here.

One of the great things about weeknotes and working in the open means that we can connect with people who aren’t directly on the project or in our network. I was lucky enough to see Dr Gyles Morrison speak at a UX conference last year. We had made contact before, but through our weeknotes Gyles got in touch to share the work he did for his masters on ‘An Assessment of User Needs and Mobile Technology For The Assessment And Treatment Of Patients Presenting With Vaso-Occlusive Crisis’, which is directly related to the discovery work we are currently doing. Connie, Gyles and I had a chat this week about this work and about some potential ideas as a follow up to this first phase of work.

We’re trying out a new section of week notes this week, what we’re reading/are of interest. Along with Gyles’s thesis and our landscape review we have been reading some things to help us understand the experience of sickle cell as well as the politics and history of sickle research, all of which we believe helps us understand the space so much better. On the list this week is

• The Politics of Sickle Cell and Thalassaemia (Race, Health, and Social Care) by Elizabeth Anionwu

• The Sickle Cell Guide by Kye Gbangbola

• Sickle Cell: Jamaica and Beyond – A Life by Graham Serjeant

If anyone out there has any other recommendations for books or papers you think we should be reading, please don’t hesitate to get in touch.