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.

We understand that many of these issues are well understood within the sickle cell community; our goal is to document them from the perspective of people with lived experience, and to use this information and insight to inform a set of recommendations for ways in which digital interventions could begin to address these problems.

Thank you so much to everyone who has gotten in touch with us over the last week since we published our weeknotes for the first time. It’s been fantastic to hear from so many of you.

We’ve had people volunteer to take part in our user research, ask how they can support the project more generally and invite us to talk about how our work overlaps with theirs. We’ll share more in the coming weeks, as we get to have these conversations. In the meantime, keep it coming! You can get in touch with us directly by emailing connie@public.digital

The focus this week has been on setting up our user research. This has involved things like:

• Planning the logistics - who, what, when, where

• Setting up our data protection processes

• Preparing useful information for user research participants about what to expect

We’re kicking off on Tuesday with a series of conversations with people with sickle cell.

Throughout our research, we will be led by the people we are speaking to. We are looking to understand, from the perspective of people with lived experience:

• In their own words, what it’s like having and managing sickle cell

• What digital tools, products and services people with sickle cell are using in their everyday lives; to what extent these play a role in managing their condition

• Beyond medical advice, what helps to manage sickle cell and acute painful episodes; what makes it hard

• What happens when a person experiences an acute painful episode. For example, what steps are taken, who is involved, what is on your mind, what it feels like to seek help

It is possible that for people with sickle cell, sharing their experiences of acute painful episodes with us and the treatment they received will be difficult and distressing.

As such, we have thought carefully about how to approach these conversations to make sure that people feel safe, and as comfortable as possible. With thanks to the many people inside and outside of Public Digital who have supported us with this work.

One way we do this is by sharing with participants upfront the kinds of topics we'd like to discuss, so that there are no unpleasant surprises for them.

Ultimately, it is really important that everyone who takes part in our research understands that they will be able to stop the session any time. If there is anything that participants don’t feel comfortable sharing with us, they don’t have to.

If you need emotional support, please call the Sickle Cell Society helpline on 07809736089 (Monday - Friday, 10am - 5pm).

Next week, we will start our user research and we will begin to meet some of the people who have been in touch with us about how we can support each other to improve the experiences of people with sickle cell. You’ll hear all about it on Friday!

As ever, please don’t hesitate to get in touch with us by emailing connie@public.digital if there’s anything you’d like to share with us, or ask us about.