Sickle cell digital discovery team weeknote #1

Better acute painful sickle cell episode care

5-9 September 2022

A (deliberately impossible to read) snapshot of our first user journey map - impossible to read so that we don't inadvertently influence anyone who may later share their experiences with us. We will share this openly after we've finished mapping the experience out with more people.

Note: This is our first weeknote for the sickle cell discovery project, which we originally shared via email with a group of project stakeholders on 9 September 2022. It has been lightly edited to make sense for an audience who we’ve not met before.

Who we are

We are the sickle cell discovery team at Public Digital. We’re working with the NHS Race and Health Observatory to run a discovery project that builds a deep understanding of the challenges people with sickle cell experience in accessing adequate health care when they are having an acute painful sickle cell episode. What we learn will help us to recommend possible solutions to test.

What have we been up to this week?

We started the week by meeting to plan our work. This is a regular meeting which we hold every Monday. This week, we agreed that are priorities were:

  • To finish preparing for our kickoff meeting with external stakeholders

  • To run the kickoff itself

  • To run our first round of user journey mapping

User journey mapping

User journey mapping is an activity that teams can do to help them better understand the experience their users have when they are using a service.

It involves talking to people who have experience of a service, and asking them questions about how it works, the stages they go through, what they are trying to achieve and what works well and gets in the way. Then you map out what you’re hearing as you go, normally on a physical or virtual whiteboard, using post-its.

User journey mapping helps you to gain a deeper understanding of people’s experiences and it also builds shared understanding across a team.

This week, we focused on developing our collective team understanding of what happens when a person is experiencing an acute sickle cell painful episode. Soon, we will be running workshops with people with lived experience to build on what we’ve learnt so far.

Please get in touch by emailing if you would like to be involved in one of those workshops.

Our kick off with the NHS Race and Health Observatory and the Sickle Cell Society

We held our kick off meeting at the Sickle Cell Society offices where people joined us virtually and in person. Thank you so much to the team at the Sickle Cell Society for hosting us!

The purpose of the day was to:

  1. Start forming relationships and connections between the people who are invested in this work, including our team at Public Digital, the NHS Race and Health Observatory, the Sickle Cell Society, and people with lived experience of sickle cell.

  2. Share information about the work we will be doing and how people can get involved and keep up to date with our progress.

We really enjoyed the day. It was great to meet so many people with a shared purpose, we learnt lots of new things and we have started to form connections with people that will be really important to the success of this discovery.


Today (Friday 9 September 2022) has been all about reflecting on what we have done and learnt this week, capturing everything that came out of yesterday’s conversations which we’d like to follow up on and getting ready for next week.

We hope you’ve enjoyed our first ever weeknote and found it useful - and don’t hesitate to get in touch by emailing if there’s something you’d like to pick up on from the weeknotes.

Public Digital


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