Generations of Sickle Cell Disease (SCD) patients and families across the UK have long contested the lack of resources dedicated to their condition.
It seems now, after the historic publishing of the NHS Race and Health Observatory’s ‘Sickle Cell Disease Digital Discovery Report’, that their unmet need will finally come to light.
This nominal publication stated that we can only expect patient outcomes to plummet without innovative technologies supporting better care. Recognising the fraught state of the current health landscape, the report highlights how the effects of multiple factors, including staff strikes, poor resource allocation and access, are felt disproportionately and acutely by SCD patients.
Historically, this has been caused by lacking system-wide infrastructures to manage SCD as a condition. This has been most evident in the dearth of interventions that can help patients to anticipate, prevent or work around SCD-specific symptoms and adverse health events, like the onset of a vaso-occlusive crisis (VOC). To improve outcomes and care experiences for the SCD community, the report argues that the only true way to achieve this is through committing more focus and investment in digital innovations. Interventions that focus simultaneously on improving outcomes and visibility around the patient experience, like those led by Sanius Health, were identified as hallmarks for moving SCD care forward.
Sanius Health: 'Notable' Technological Solutions Addressing SCD Research
Among the many gaps in SCD care highlighted in the report, the NHS Race and HealthObservatory noted that a critical issue in SCD care today is the lack of understanding of patients' lived, daily experiences. Without real-time visibility, the nuanced needs of the individual and the community are disregarded or missed by care practitioners. As a result of not meeting these needs, individuals often receive poor in-patient and A&E experiences.
Dr. Sanne Lugthart, a consultant haematologist at University Hospitals of Bristol NHS Foundation Trust and SCD thought leader, believes that the only way to moveSCD care forward is to utilise technologies that provide deeper, real-time insights. She argues that:
"Feedback provided by patients' individual experiences in their care pathway is crucial not only to optimise digital innovations further but also to support the health care professionals in their care for SCD patients."
She adds that to see 'improved' outcomes across the SCD patient population, we need to look more deeply into the value of real-time data:
"Furthermore, an improved patient outcome could be achieved by having real-time data available. This will give clinical teams improved visibility of the patient's condition before the patient presents with a VOC."
Sanius Health, a London-based company, has won several awards for its work which addresses many of these challenges for rare disease patients. In leading how research, clinical and industry partners can integrate remote monitoring, artificial intelligence-driven and patient support solutions, the report identified Sanius Health as a leader in developing more 'personalised predictions and instant access to care information:
"Notably, we came across Sanius Health, a health technology organisation working to support people with rare and chronic diseases, including sickle cell disease. They are developing an online community for people with chronic diseases, and they are researching how to help people improve their own well-being by giving them personalised predictions and instant access to their full medical history. This is made possible by users inputting wellbeing data into an app and through continuous biometric tracking via a smartwatch."
Partnering with hundreds of patients initially and over 65 treatment centres, Sanius Health blends live patient data, remote monitoring and patient-reported outcomes in building a complete picture of the patient journey. Its digital hospital, patient-centric and supportive infrastructure were seen to be exemplary in creating centralised care and unique to patient care. Through its potential to build better, and personalised treatments, the report recommended further exploration into technologies like Sanius Health's ecosystem, particularly in terms of how its methodology could accelerate in-hospital care experiences, catalyse better management of VOCs, and overall outcomes. Lena René, one of the members of Sanius Health's ecosystem, states that the platform has empowered her to advocate for her own care, especially within in-hospital settings.
"It is important for patients like me, who have Sickle Cell, to understand what's going on with my body. Understanding what's going on with me at this level, it gives me the courage to advocate for my health and myself. Since joining Sanius Health, and using the app and watch, this has been easier for me. What is most important, above all, is to believe in your body. And in yourself. Because no one can tell you what you are going through. Only you can do that, and no one can take that away from you."
Looking Forward
Despite the clear need to provide the best possible care for this vulnerable patient group, patients consistently feel the brunt of neglect, lack of support and poor hospitalisation experiences. As illustrated in the NHS Race and Health Observatory Sickle Cell Digital Discovery report, this will only improve through digitised interventions – especially those that can help the health communities develop more personalised and innovative approaches to care.
As an organisation that pursues improved access, equity and innovation at its core, Sanius Health's award-winning technologies strive to accelerate advancements in care and research. Through deploying digital hospital, machine learning and real-world evidence techniques, Sanius Health aims to support patients and health providers in deploying better care strategies; and, above all, better patient outcomes.
To learn more about Sanius Health, visit: www.saniushealth.com
