Sickle Cell Bundle Cluster Randomised Trial Project
A recent parliamentary inquiry into avoidable deaths and failures of care for sickle cell patients i...
Sickle Cell Digital Discovery Report: Designing Better Acute Painful Sickle Cell Care
Last year, the independent NHS Race and Health Observatory commissioned consultancy, Public Digital, to undertake a ‘digital discovery’ project to explore the lived experience of people undergoing acute emergency hospital admissions for sickle cell and managing crisis episodes at home.
The NHS Race and Health Observatory commissioned Public Digital to explore the potential of digital interventions to improve acute sickle cell care pathways during an acute painful episode or crisis. Between August and December 2022, we ran a discovery project that aimed to build a deep understanding of the challenges people with sickle cell experience in accessing adequate healthcare when they are having a crisis. Our intention was to conduct research that would identify, and begin to validate, candidate solutions for testing in a further phase of work.
Key recommendations:
- work to develop personalised, digital care plans in a trust-generating way that addresses specific, common barriers in sickle cell care. This could include exploring medication tracking between patients and professionals;
- consideration is given to testing, developing and using national sickle cell care guidelines alongside this intervention, with a particular focus on how to address healthcare professionals’ lack of awareness of sickle cell disease and how that impacts crisis treatment;
- a service design approach is taken to investigating wholesale redesign of sickle cell care pathways, to establish a national standard that takes into account different levels of prevalence in different places:
- existing digital interventions that have potential e.g. personalised, digital care plans, guidelines, wearables are fully examined
- a focus on investigating new approaches e.g. access to pain specialists during a crisis an exploration of different models of care
- deep-dives are conducted with the aim of improving the transition between paediatric and
adult services
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