Building personalised digital care plans for better sickle cell crisis care

In an acute sickle cell crisis, patients still have to prompt staff about critical, safe pain relief.  The NHS Race and Health Observatory, supported by grant funding from Vertex Pharmaceuticals, is further developing its Digital Sickle Cell workstream to establish personalised, digital care plans to improve crisis management.

Why acute sickle cell care needs change

“My care plan is fine – it’s more about getting the caregivers to actually listen to you… It would be easier if there was an e-element, so I could get it up on an app or something. There’s one thing having a physical copy. If anyone and everyone can have access to it then it can easily be updated every time.” – User research participant;  Sickle Cell Digital Discovery Report: Designing Better Acute Painful Sickle Cell Care.

In 2021, the All-Party Parliamentary Group on Sickle Cell and Thalassemia published the No One’s Listening report, finding serious failings in acute care and evidence of attitudes underpinned by racism.

Through its Sickle Cell Programme, the NHS Race and Health Observatory commissioned Public Digital to explore the potential of digital interventions to improve care pathways during an acute painful episode (often called a crisis). That work produced the Sickle Cell Digital Discovery Report: Designing Better Acute Painful Sickle Cell Care, which recommended personalised, digital care plans as a practical route to better and more consistent acute care.

While personalised care plans already exist in some settings, they are often in paper format and there is no clear consensus on the definition of what a care plan is. As a result, the NHS has not yet fully realised the benefits of digital personalised care plans for sickle cell, leading to poorer patient outcomes and higher service costs.

How personalised digital care plans could help

As highlighted by our Sickle Cell Digital Discovery Report, personalised, digital care plans offer three key opportunities:

• Help clinicians who are not sickle cell specialists manage pain safely and quickly during a crisis (for example, by giving appropriate analgesia sooner)
• Support trust between patients and healthcare professionals
• Improve professional accountability by recording access to and/or use of the care plan.

Thanks to support from Vertex Pharmaceuticals which has awarded grant funding, the Observatory is embarking on a new project to develop personalised, digital care plans in a trust-generating way that addresses specific, common barriers in sickle cell care.

This three-phases project will take a user-centred, iterative approach to develop and scale digital services outside traditional NHS frameworks, enabling agility, responsiveness and long-term sustainability. Phase 1 (Discovery and partnership development) is now underway to establish governance, engage stakeholders and set up the programme, with the ultimate goal to support widespread adoption across the NHS and tackle long-standing inequalities in sickle cell care.

Too often, people with Sickle Cell arrive in severe pain and still have to explain their condition, repeat their history, and fight to be believed. That delay is not just frustrating; it can be dangerous. Personalised digital care plans can help staff act quickly and consistently, especially in busy emergency settings where clinicians may not be specialists. By making the agreed plan easy to find, update and use, we can improve pain management, strengthen trust, and make services more accountable. This work is about using digital in a practical way to reduce inequalities and improve care when it matters most.

Zainab Garba-Sani, Vice Chair of the Sickle Cell Society, said:

“There is nothing more exhausting than finding the courage, strength, and commitment to provide feedback – especially when you are at your most vulnerable, as so many people with sickle cell are during a severe pain crisis – only to feel unheard. The NHS Race and Health Observatory took what they heard through the No One’s Listening report, built upon it with the Sickle Cell Digital Discovery Report, and are now turning their attention to the most critical part of any policy journey: implementation. It is truly reassuring and motivating to see this commitment and momentum behind the digital care plans work.

“Patients and caregivers have been clear about how much this matters, and now we can hopefully begin to feel the impact. I have seen first-hand how a care plan can transform the care received. For me, it meant getting the right care, at the right time, without needing to be on high alert, constantly advocating for myself, or fearing for my safety.

“A good care plan can significantly reduce the burden on patients, improve their experience, raise the quality of care, and ensure safety is prioritised. I recently came across the idea that trust in healthcare is built on a combination of competence, equity, and integrity. A personalised, digitally accessible care plan can help deliver all three – and we know that trust remains a profound challenge in our communities. I hope this project inspires others with lived experience to continue to share their stories and partner with health systems to transform care.”

Mary Adeturinmo,  freelance, Healthcare & Design Researcher, Imperial College London, said:

“As someone living with sickle cell, and as a Healthcare & Design Researcher who has worked closely with the sickle cell community, watching this work move from discovery to development is genuinely meaningful. Too many of us have spent years walking into emergency settings and having to justify our own care, explaining our condition and prompting staff on timely medical treatment, whilst in agony.

“What resonates most for me is that this work began by listening to the community’s voices, which shaped the research, and now the research is shaping real-world solutions. A personalised digital care plan means that whether you are admitted to your local hospital or one on the other side of the country, your care plan is already there (agreed upon with your clinicians), accessible to the local team treating you, and no longer dependent on you having to fight to be heard. “

 For further information, please contact Dr Carl Reynolds, Senior Clinical Advisor at the NHS Race and Health Observatory: [email protected].