UK Government consultants say digital tech could improve sickle cell patient experience

A report exploring the possibility that digital technologies could be used to improve the experiences of sickle cell patients accessing NHS care has been published by the NHS Race and Health Observatory (NHSRHO).

Commissioned following the publication of 'No One's Listening', a report of the findings of the All Party Parliamentary Group on Sickle Cell and Thalassaemia inquiry in 2021, the latest Sickle Cell Digital Discovery Report explored opportunities to improve experiences of care for this group of patients. The initial report had revealed serious care failings of patients using emergency departments and evidence of prejudicial attitudes underpinned by racism. The latest NHSRHO report reinforced these previous findings of poor care in conversations with nine participants with sickle cell and four healthcare professionals and has made suggestions to improve overall care for this group.

'The goal has been to develop a deep understanding of the needs of patients and healthcare professionals during an acute painful sickle episode… with a view to identifying promising digital interventions for future testing', the report read. 'Our research suggests that personalised, digital care plans have the most potential to support improvements in acute sickle cell crisis care.'

Sickle cell disease is one of the most common genetic conditions in the UK, affecting one in 2000 live births in England, disproportionately affecting people of African and Caribbean ancestry. Patients have distorted red blood cells that cannot carry oxygen efficiently. These cells die early and can block blood vessels, leading to acute sickle crises that can manifest as severe pain, breathing difficulties or strokes. Untreated, it can lead to permanent disability and/or death.

Researchers from Public Digital, the consultancy firm commissioned by NHSRO identified problems experienced by sickle cell patients tracking medication and communicating their pain relief needs to NHS staff in times of crisis, in their conversations with patients and healthcare professionals.

Interviewees also described experiencing mistrust from healthcare professionals unfamiliar with their condition and being perceived as drug seekers. One study participant said, 'My care plan is fine – it's more about getting the caregivers to actually listen to you'.

Authors identified the use of wearable technologies to monitor relevant patient stats, using apps to help record medication use and share this information with healthcare professionals as potential tools, and proposed the development of personalised, digital care plans in addition to existing personalised care plans. They also proposed the development of better guidelines to help healthcare professionals understand how to manage sickle cell patients experiencing a crisis, and an overall platform for all of these tools to operate from.

Last year, the UK Government proposed using data collected from women's health apps and 'femtech' to help improve understanding of endometriosis and other conditions as part of the Women's Health Strategy (see BioNews 1152).