The Digital Health Passport for Sickle Cell Disease – an NIHR Invention for Innovation (i4i) Programme Award

The Digital Health Passport team, in collaboration with the Caribbean and African Health Network (CAHN) and interoperability experts from the OpenEHR community, is delighted to announce that they have received funding from the NIHR. This funding will enable Tiny Medical Apps (TMA) and partners to swiftly co-design, prototype, and develop enhanced capabilities to provide improved support for up to 15,000 individuals living with sickle cell disease (SCD) in the UK.

Young people (age 16-20) with SCD report poorer experiences of care than those in other age groups, particularly during emergency attendances. Those aged 20-29 are hospitalised more often than people in other age groups. This suggests young people reaching adulthood need extra support. By providing a home for clinical care plans the Digital Health Passport can empower people to get timely analgesia in emergency situations.

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The development of the Digital Health Passport (DHP) for Sickle Cell Disease follows the success of the asthma self-management solution, co-created with healthcare specialists and patients across the NHS. Rated highly by ORCHA, DTAC approved, and now being implemented in 12 ICB regions, the DHP aligns with NHS priorities for patient-centred care and Core20PLUS5 priorities.

The new funding will aid in the co-design and development of a platform for sickle cell patients that can operate as a standalone service and eventually be integrated into other care planning systems planned in London and Nationally.

Activities over the next few months will include discovery, co-design and prototyping, clinical safety development and governance outputs. This ambitious and innovative project is expected to bring about significant improvements in the quality of care for SCD patients. In addition, the project aligns with government policies and the UK Rare Disease Framework to raise awareness of rare diseases among healthcare professionals, better coordinate care, and improve access to specialist care, treatments and drugs.

For individuals with sickle cell disease (SCD), the Digital Health Passport (DHP) aims to address several key issues:

  • Sub-standard care on general wards and in A&E: Young people with SCD often report terrible experiences of care, especially during emergency situations. The DHP is designed to improve the overall quality of care and patient experience. It provides a ‘patient-centred’ home for clinical care plans that can be easily accessed and shared with all healthcare providers.
  • Lack of timely support: Timely support during emergency situations is crucial for managing SCD crises. The DHP facilitates the sharing of medication information between patients and healthcare professionals, ensuring that patients receive appropriate analgesia at the point of crisis.
  • Need for self-management: The DHP empowers patients to take control of their condition by allowing them to track symptoms, other well-being measures such as hydration, and crucially, their medication. The tracking features can help patients better understand their condition, identify triggers, and convey information easily to others.
  • Stressful transition from paediatric to adult services: Young adults transitioning from paediatric to adult health services often need extra support. The DHP can assist by ensuring that clinical care plans are accessible and up-to-date.
  • Fragmented education and support services: The DHP provides education co-produced by people living with the condition, ensuring that the information is relevant, accurate, and helpful. It also provides links to support services, helping individuals with SCD to access the resources they need to manage their condition effectively.

For individuals with asthma, the DHP addresses similar challenges. Asthma is a long-term condition that can be difficult to manage, particularly for young people. The UK has the highest teenage mortality for asthma in Europe, and children from underserved communities are disproportionately affected. Asthma is a Core20PLUS5 priority area for children and young people. The DHP allows patients to track their symptoms, triggers, and medication use, providing valuable data that can help healthcare professionals tailor treatment plans. Importantly, the DHP provides a home for a personalised asthma action plan and emergency instructions, ensuring that patients have immediate access to crucial information prior to an asthma attack. The DHP also provides education about asthma, helping patients understand their condition and how to manage it effectively.

In both cases, the DHP is designed to empower patients, giving them the tools and information they need to take control of their health.

Dr Greg Burch, Joint CEO and Clinical Director at TMA said: “This is a really great project to be collaborating with the Caribbean and African Health Network. We’re looking forward to hearing how people with sickle cell disease want to be supported with digital tools and doing our best to meet their expectations.

Charles Kwaku-Odoi, Chief Officer of CAHN said: “We are pleased to express our satisfaction on this collaboration in times like this with Tiny Medical Apps on this critical response to tackling sickle cell disease prevailing on the younger demographic, because we strongly believe that all survivors of the sickle cell disease should have equitable access to requisite assistance and support, irrespective of their backgrounds. By establishing a secure avenue for accessing aid through the sickle cell app, the quality of life for all individuals with this condition within our community is poised to improve significantly.

If you would like to find out more about the DHP: Sickle Cell Disease project or would like to work alongside TMA, please contact [email protected]

For more information on CAHN, please visit: