Sickle cell weeknotes — Public Digital

The words "Sickle Cell Digital Discovery Workstream September 2022" on a yellow background

Introduction to our sickle cell work

An overview of our sickle cell digital discovery work and our approach

A table in MIro captures the experiences of people going through stages in sickle cell care with notes with unreadable text inside

Sickle cell - Weeknote #1

This week we met to plan our work and to finish preparing for our kick-off meeting with external stakeholders

Sickle cell - Weeknote #2

This week we're finalising our evidence review and planning our research and landscape analysis

A screenshot of the NHS Race and Health Observatory's article. The article is called: "Public Digital announced to lead Observatory’s Sickle Cell Disease digital discovery project" and it has a photograph of two people speaking to each other, taken at our launch event at the Sickle Cell Society offices earlier this month.

Sickle cell - Weeknote #3

This week we concentrated on articulating what we would like to learn from conducting this research.

A screenshot of a research plan with headings such as "research overview", "what we have done so far" and "what we would like to do next"

Sickle cell - Weeknote #4

This week we have been setting up our user research from logistics to data protection

A photograph of some of the members of the sickle cel team, sitting across a table engaged in conversation

Sickle cell - Weeknote #5

This week we're starting our user research with people with lived experience of sickle cell

From left to right: Doctor Sanne Lugthart, Consultant Haematologist at University Hospitals Bristol and Weston NHS Foundation Trust (UHBW), Nicole Paterson, Clinical Nurse Specialist, Haemoglobinopathies at UHBW, Eugine Yafele, Chief Executive Officer at UHBW, Connie van Zanten, consultant at Public Digital and Habib Naqvi, Director at the NHS Race and Health Observatory. This photo was taken at the Bristol Heart Institute on Monday 10 October.

Sickle cell - Weeknote #6

This week we started to synthesise and analyse our research findings, did more research and some planning ahead

A screenshot of a document that with two headlines reading "sickle cell digital discovery" in bold and "better acure painful sickle cell care" in standard font

Sickle cell - Weeknote #7

This week we drafted the first iteration of our discovery report

Illegible cards and screenshots on a Miro board

Sickle Cell - Weeknote #8

This week we're going into more depth with the analysis of the research we have done and continue talking to experts

A table shows the comments of sickle cell patients describing their experiences at different end to end stages of an episode involving hospitalisation.

Sickle Cell - Weeknote #9

This week we're bringing people together with a range of skills and experiences related to sickle cell disease and delivering services within the NHS.

A grid of people dialling into a group Zoom call

Sickle Cell - Weeknote #10

This week all of our attention we are designing and hosting our prioritisation workshop

Sickle Cell - Weeknote #11

This week is about debriefing and drawing conclusions from our workshop last Friday, and beginning to form our recommendations

Sickle Cell - Weeknote #12

This week we’ve shared the first full draft of our findings and recommendations from the discovery with Carl, from the NHS Race and Health Observatory

A screenshot of the report with a headline that reads "Sickle cell digital discovery report
Designing better acute
painful sickle cell care"
and "First draft, 23 November 2022"

Sickle Cell - Weeknote #13

This week we are finishing, sharing and reviewing our recommendations

Chris, Connie and Lou from NHS Providers on site at Rotherham NHS Foundation Trust

Health and care

We work with health and social care organisations around the world to achieve the full promise of digital, and radically improve outcomes.

The Public Digital team with the NHS Race and Health Observatory

Working boldly in the open to kickstart the redesign of sickle cell pathways

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