22 September 2022

Public Digital announced to lead Observatory’s Sickle Cell Disease digital discovery project

Barriers to treatment, support and emergency healthcare faced by patients experiencing acute painful sickle cell episodes will be investigated by the NHS Race and Health Observatory. The Independent health body plans new evidence-based recommendations to improve emergency care and treatment pathways for NHS sickle cell patients.

Today it announced Public Digital has been awarded the ‘digital discovery’ research commission.

Public Digital will lead original research into the experiences of people with sickle cell, including listening to NHS patients’ and carers’ first-hand accounts of acute emergency hospital admissions and managing the condition at home. Research will focus on a series of interviews and ‘experience mapping’ workshops.

Sickle cell disease is one of the most common genetic conditions in England, affecting around 15,000 people and predominantly occurs in people of African and African-Caribbean origin. According to the National Institute for Health and Care Excellence (NICE), the condition is also on the increase in mixed race families. Whilst the life-limiting disease causes regular hospitalisation for severe pain bouts, no curative treatment has been developed.

Research will start in October with a landscape review of relevant, existing technologies, products and services currently available to people with sickle cell, across both paediatric and adult care. The intention is to better understand what digital products and services already exist that have the most potential for people with sickle cell.

Public Digital will learn from specialists in red-cell disorders – those tasked with providing care during acute, painful sickle cell episodes – along with accident and emergency teams, GPs, healthcare professionals and the families and friends impacted by those with lived experience of the condition.

The Observatory will shortly announce the outcomes of two additional sickle cell commissions; one will review how funding is allocated for sickle cell in comparison to other rare inherited diseases such as Cystic Fibrosis, and a new research trial design will also be commissioned to identify best practice in the management of acute painful sickle cell episodes.

Sickle cell disease covers a group of inherited health conditions that affect red blood cells and cause blockage of blood vessels resulting in acute painful sickle episodes.  The condition can result in increased risk of conditions including stroke, pulmonary embolism, pulmonary hypertension, myocardial infarction and retinal artery occlusion.

All three sickle cell commissions will be undertaken in collaboration with the National Haemoglobinopathy Panel, the UK Forum on Haemoglobin Disorders and the Sickle Cell Society. The projects will be overseen by the Observatory’s sickle cell advisor, Dr Carl Reynolds.

Chris Fleming, Health and Care practice lead, Public Digital, said:

“Public Digital is delighted to be partnering with the NHS Race and Health Observatory to complete such a vital piece of work. Our goal is to find a starting point for transforming the experience of people with sickle cell, by establishing a prioritised set of interventions to test, underpinned by what we learn from patients with lived experience.”

Dr Carl Reynolds, Medical Adviser at the NHS Race and Health Observatory, said:

“I am delighted that Public Digital has been appointed to carry out this important work. I am confident that their modern patient-focused approach, healthcare experience, and digital expertise, will really help to deliver much needed and long-overdue improvements in the management of acute painful sickle cell episodes.”

Dr Habib Naqvi, Director of the NHS Race and Health Observatory, said:

“We are pleased to announce that Public Digital is leading this deep dive of work which will look at the multiple complexities surrounding sickle cell disease. As a priority, we need to discover new measures and treatment plans that can help eradicate the often unacceptable, substandard care people with sickle cell have historically received whilst being unwell and in acute pain.

“This is not a new, unknown condition. Sickle cell disease was identified over a hundred years ago, but to date it has been associated with limited resource, innovation, and research.”

The Observatory will produce a summary of the digital discovery work, with a list of recommendations to take forward for further testing of their impact, effectiveness and scalability by January 2023.

John James OBE, Chief Executive, Sickle Cell Society, said:

“The Sickle Cell Society looks forward to working with Public Digital and the Observatory to help the NHS address the serious health inequalities affecting the lives of people living with sickle cell disorder and their families. This work is long overdue and we hope it will shift the dial positively towards securing real improvements in sickle cell care and outcomes for patients.”

Approximately, 8% of individuals of African descent in the UK carry the sickle cell gene, but the disorder is also prevalent in Eastern Mediterranean, Middle East, India, Caribbean, South and Central America populations/communities.