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.

This week, we focused on three things:

1. Getting set up to work in the open (more on what this means below)

2. Planning our user research

3. Considering - and adapting our approach - to a review of sickle cell products and services

Public Digital is committed to a concept called working in the open. It means showing people the work you are doing, as you’re doing it. It’s not just about demonstrating progress, it’s also about communicating honestly to build a movement for change, and it’s important for good governance. It gives stakeholders a window onto your work that drives up quality, helps unblock problems, and manages your dependencies. You can read more about what we mean when we say working in the open here.

Here's what happened this week:

• The NHS Race and Health Observatory published an article announcing this work on their website

• The Independent wrote about and tweeted about the work.

• We wrote our third set of weeknotes, which you’re reading now!

We are looking to run workshops and interviews with people with lived experience of sickle cell, and a range of (non-sickle cell expert) healthcare professionals who may find themselves responsible for looking after someone who is experiencing an acute painful episode.

This week, we concentrated on beginning to articulate what we would like to learn from conducting this research.

For example, we would like to better understand what digital platforms, channels and tools people with sickle cell are currently using to help them do things like learn about, communicate and manage their condition.

We won’t share our learning goals in full yet, as we don’t want to inadvertently influence the people who we end up speaking to.

We are going to run a review of products and services that exist to support people with sickle cell, and those that care for them, to understand what’s already out there that has a meaningful impact that has potential to be scaled.

Our initial plan was to run that review before the user research, in order to inform our learning goals. Now, however, we have decided to do the work the other way around. We’ve made this decision because we’ve realised that there are a lot of different areas upon which we could focus, for example non-specialist digital platforms (like WhatsApp, or Instagram), specialist digital platforms (like those we started to identify in our evidence review), or tools for pain management, or communication with healthcare professionals, and many more.

In order to make sure we focus on what is most important, and has the most impact, we will be led by what we learn in the user research.

Our top priority now is finding people who would like to participate in our user research. If you are either:

• A person who has lived experience of sickle cell

• Or a (non-sickle cell expert) health care professional who may find themselves responsible for looking after someone who is experiencing an acute painful episode

• And if you are interested in participating in a group workshop or an interview where you can share and answer questions about your experiences