Sickle Cell - Weeknote #9

What have we been up to this week?

Will Roissetter again, reporting on a bit of an admin and analysis week for Sickle Cell discovery team. So these weeknotes are a bit shorter than usual.

This week:

• Booked in our prioritisation workshop for next week and started prepping

• Tidied up the user research board so it’s ready to be shared

• Started applying user needs to the stages of a sickle cell crisis

Prioritisation workshop

This week we sent out our invites to our prioritisation workshop for Friday next week. As we mentioned in the previous weeknotes this workshop is 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

Tidying up our user research board

One of our goals is to be as open and share as much as possible about the process we have been going through on this project. A large part of that process is how we prepare, conduct and analyse our user research.

As part of preparing to publish our initial findings in weeknotes #7 we created a Miro board where we put all of our notes from the user research sessions and desk research we have conducted so far. As we had only just finished conducting the research, the board was a representation of where we were as a team at the time, lots of unorganised data that we were sifting through to make sense of the problem space. Now we have had a bit more time to go over this and attach themes, ideas and findings to the board we have tidied it up so that it is now in a place where others can look at it and make sense of what we have done. We're now going to be working out how we publish this in an accessible way.

Applying user needs to the stages of a sickle cell crisis

A large part of doing research in a discovery phase is understanding what needs people have of different services. One of our goals that we have set ourselves for this phase of work is

Playback this lived experience and follow up with patients so that our interpretation is true to what they have told us.

The way we are currently trying to do this is to use an experience map of the different stages someone goes through when they are having a sickle cell crisis. Ben Holliday does a great job at explaining different types of maps in this post. From the user research we have done we are applying some of the things we have been told onto a map and then adding people’s needs that we have heard to the different stages. Once this is complete we will go back to some of the people we spoke to make sure it is a true representation of what they told us. We will also be looking to make this public in the near future.

That’s it from us this week and as always if you would like to support this work and collaborate with us - please keep getting in touch by emailing [email protected].