Sickle cell - Weeknote #2 — Public Digital

12-16 September 2022

Note: This is our second weeknote for the sickle cell discovery project, which we originally shared via email with a group of project stakeholders on 16 September 2022. It has been lightly edited to make sense for an audience we’ve not met before.

Who we are - a quick reminder

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 are weeknotes? - another quick reminder

Our weeknotes are a short and simple summary of what we’ve been working on over the last week. The idea is to share what we’re doing so that you can get in touch with us if you see anything that you’d like to talk to us about, or if you have something to share with us.

What have we been up to this week?

This week, we focused on three things.

1. Getting set up for our sickle cell products and services landscape review

With massive thanks to one of the doctors we met at last week's kick off - a consultant haematologist - who has found the time to meet with us next week to help us understand what digital channels are already out there. Our intended goals from conducting the landscape review are:

To develop a more thorough understanding of what's out there now and build a good understanding of the space
To identify products and services that have potential for impact and scalability

2. Taking the first steps for planning our user research

We need to find some people that are happy to share their experiences with us. In practice, we’re looking to run a combination of workshops and interviews between Monday 26 September and Friday 7 October.

We would like to speak to people who have sickle cell and with a range of (non-sickle cell expert) health care professionals who may find themselves responsible for looking after someone who is experiencing an acute painful episode. We’ve started reaching out to get help with finding these people to speak to.

If you would like to take part in any of these activities, or if you think you might be able to help us find people, please get in touch by emailing [email protected]

3. Finalising our evidence review

We’ve tidied up our evidence review, and we’re going to stop developing it for now. You can take a look at it here. Caveat: it’s not an academic literature review. Its main purpose is to help us direct our research, by identifying key themes in respect of use of digital interventions in the management of painful sickle cell episodes.

The evidence review supported much of what we already understand about the management of painful sickle cell episodes, for example about the impact of pain and undertreatment of pain, and systemic racism in the NHS.

Some themes that emerged which we’d like to explore in our research

Benefits of digital health interventions including:
- Enhancing an individual's self-efficacy, organisational skills, or change adherence behaviour
- Providing a form of communication (e.g. with health professionals) including self-held patient records and pain protocols
- Establishing social support networks

Barriers to digital technology adoption: for example:
- Mistrust of healthcare providers
- Lack of interest in technology
- Some digital channels can be perceived as unprofessional (text messaging & social media)
- Privacy concerns
- Notification fatigue

Impact of digital health interventions: a systematic review found that evidence of mobile health to support self-management is modest and the evidence of cost benefits of digital interventions for SCD self-management is unclear.

And a few other things we have been talking about this week

The format and length of the report that we publish at the end of our discovery
Trusts we could work with to set up for testing whatever comes out of the discovery
The All-Party Parliamentary Group meeting next week, to report back on progress made so far - now postponed because of the passing of the Queen