Sickle cell digital discovery project announced by Race and Health Observatory

A new programme of work to understand the needs of sickle cell patients and identify improvements in managing acute painful sickle cell episodes is being undertaken by the NHS Race and Health Observatory.

The independent health body has published a commission for a new sickle cell digital discovery project.  This will explore the potential for digital interventions in supporting the management of acute painful sickle cell episodes both at home and in hospital.

Sickle cell disease covers a group of inherited health conditions that affect red blood cells. The abnormal blood cells can cause blockage of blood vessels (vaso-occlusion) resulting in acute painful sickle episodes, and increased risk of a number of conditions including stroke, pulmonary embolism, pulmonary hypertension, myocardial infarction, retinal artery occlusion, retinopathy, priapism, infection, and anaemia. It is a serious and life-limiting condition for which curative treatments have not yet been developed.

In addition, two further sickle cell tenders will be published by the Observatory in June 2022, which look into comparative resource allocation with other rare inherited diseases such as Cystic Fibrosis, and a research trial design to identify what works best in the management of acute painful sickle cell episodes.  All commissions will be undertaken in collaboration with the National Haemoglobinopathy Panel, the UK Forum on Haemoglobin Disorders, and the Sickle Cell Society.

The lack of adequate sickle cell treatment and support was starkly highlighted in an All-Party Parliamentary Group inquiry into avoidable sickle cell deaths. The inquiry report, ‘No one’s listening’, published in November 2021, found failures in hospital care and identified suboptimal management of painful sickle cell episodes by the NHS as a particular area of concern. One of the report’s recommendations called on the Observatory to undertake work into sickle cell care in relation to race and ethnicity.

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

“We look forward to reviewing new proposals to help redress the established shortfalls and existing inequalities related to sickle cell care. Research into the use of digital technologies and platforms can help provide an in-depth understanding of the needs of users and health care service providers managing acute, painful sickle cell episodes and also help the Observatory to support the NHS in identifying and evaluating potential digital interventions in the future.”

Approximately 8% of individuals of African descent carry the sickle cell gene, but these disorders are also prevalent in the Eastern Mediterranean, Middle East, India, Caribbean, South and Central America. It is one of the most common genetic conditions in the UK, affecting around 15,000 people.

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

“The Sickle Cell Society welcomes the proposals from the NHS Race and Health Observatory to help the NHS to 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.”

The scope for the digital discovery research tender is broad and includes workshops and interviews with sickle cell patients, NHS providers of acute, painful sickle cell episode services, and a review of existing solutions across the whole health system (secondary, primary, and community services) – covering both paediatric and adult care. Digital interventions such as wearable devices, online website platforms and mobile apps could also be factored.

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

“Sickle cell disease has been known about for over 100 years, and yet there has been limited innovation, research and development into modifying treatment. There is a very clear need to make high quality sickle cell care more accessible – leading to better experience and outcomes for patients. The work we are undertaking at the Observatory will help towards that ambition.”

The digital discovery project report is expected for delivery by November 2022.