In recognition of longstanding unaddressed shortcomings in acute sickle cell painful episode care, highlighted by the No One’s Listening All-Party Parliamentary Group (APPG) report, and a widespread failure to meet NICE quality standards, the NHS Race and Health Observatory developed a sickle cell program.
The NHS Race and Health Observatory commissioned Public Digital, to carry out the first part of Observatory’s sickle cell service research. The goal was to develop a deep understanding of the needs of patients and healthcare professionals during an acute painful sickle cell episode, more commonly referred to as a crisis, with a view to identifying promising digital interventions for future testing.
By researching acute sickle cell painful episode care using modern digital user research techniques, we aimed to identify interventions that hold the potential to have tangible impact on sickle cell patients, and to demonstrate how to approach digital transformation within the NHS.
We aimed to build a deep understanding of the challenges people with sickle cell experience in accessing adequate health care 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.
A snapshot of our first user journey map created with HCPs
Research
During the research phase, we conducted interviews and user experience mapping with people with sickle cell, and held a range of exploratory conversations with healthcare professionals and people who are active in the sickle cell community. We also conducted a digital landscape review to help us develop a more thorough understanding of what is available to support people to manage a sickle cell crisis now, with the intention of identifying products and services that have potential for impact and scalability.
One of the eight patient experience maps we created
This research led us to make a set of observations about the experiences that people with sickle cell have when they are having a crisis.
Sickle cell patients often have additional needs which are not picked up on by healthcare professionals in the moment of crisis, meaning they must stay alert and monitor the treatment they are receiving.
Care plans are used inconsistently, and vary widely in their format and in how they are interpreted by patients and healthcare professionals. This means they do not currently result in consistently good care, or improve accountability and auditability of care and supporting research.
Tracking the medication a sickle cell patient is taking is an arduous, daily task, and it becomes particularly difficult in the context of a painful crisis.
People with sickle cell disease who are experiencing a crisis regularly have poor experiences with ambulance care and in A&E and avoid seeking professional help for as long as possible.
Directly accessing care by sickle cell nurses or similar specialist care teams can completely change the experience of a crisis for the better.
There is a stark imbalance between the level of mistrust people with sickle cell face from healthcare professionals, and the simultaneous pressure on them to manage much of their own care.
There is a persistent lack of communication and collaboration across healthcare professionals in hospitals and across different settings, which results in an administrative burden for people with sickle cell, and contributes to poor experience and treatment when in crisis.
Different people would like a different level of input from healthcare professionals in managing their condition day-to-day, and when they are in crisis.
Outside of specialists, clinicians’ lack knowledge of sickle cell. This results in mistrust of people having a crisis and slow access to pain relief.
Prioritisation
The prioritisation phase was initially made up of a series of conversations across the team. It culminated in a productive and rich multidisciplinary, collaborative workshop where a wide range of people with intentionally different experiences, areas of expertise and relationships with sickle cell disease debated and discussed a set of four ideas that emerged from our research.
The ideas that emerged from our research, and which we asked participants to discuss and debate, were as follows:
Personalised, digital care plans for people with sickle cell disease, to instruct people who are unfamiliar with sickle cell disease in how to address a person’s pain quickly, build trust between patient and healthcare professionals, and increase professional accountability.
How to design useful sickle cell care guidelines, developed in collaboration between sickle cell experts and A&E specialists, for use in emergency settings and during a crisis, to provide healthcare professionals with good practice for the management of a crisis.
Using technology to track medication, to reduce the in-the-moment burden on people experiencing a crisis to remember and report how they manage their pain on a daily basis, and what they’ve taken so far to manage their crisis.
Using wearable technology to monitor relevant stats e.g. oxygen saturation levels, blood pressure, pulse and temperature, to help people with sickle cell disease to understand if they are going into/are in crisis and to provide information to healthcare professionals about people's stats in the run up to a crisis.
We have proposed a series of potential interventions as part of this discovery and we recommend starting with personalised, digital care plans. However, instead of specifying just one transactional service, we believe there is benefit in starting to see this as a combined “platform” of capabilities supported by underpinning activities and initiatives. These are a combination of improvements and optimisations and the building of new services under the powerful NHS brand.
An illustration of what the Sickle Cell platform could be
We proposed starting by prototyping and testing personalised, digital care plans and exploring and validating their potential role in enabling this way of working, as a front door to a wider sickle cell service platform.
Quick prototypes used to show how the service could work
In short, we will not achieve transformation in sickle cell care simply by implementing technology. The key to change will be in taking a patient-centred, evidence-based and iterative approach to the design and implementation of any intervention in sickle cell services.