digital health

IDEA-FAST: Identifying digital endpoints to assess fatigue, sleep and activities of daily living in neurodegenerative disorders and immune-mediated inflammatory diseases

Fatigue and sleep disturbances are two common and disabling symptoms that affect patients with neurodegenerative disorders (NDD) and immune-mediated inflammatory diseases (IMID). These symptoms are major predictors of poor quality of life and increased healthcare cost. Current questionnaire-based approaches to measure these symptoms have key limitations preventing them from being used as reliable endpoints in clinical trials to evaluate the effect of therapies. IDEA-FAST aims to address these issues by identifying novel digital endpoints for fatigue and sleep disturbances that will provide more objective, sensitive and reliable measures of the severity and impact of these symptoms in ecological settings. Such digital endpoints will not only help to gain insight into the underpinning mechanisms of fatigue and sleep disturbances, but will also vastly improve the efficiency of clinical trials, ultimately reducing the time and cost to bring new therapies to patients. To identify these digital endpoints, we will follow the recommendations of the Clinical Trials Transformation Initiative (CTTI). We will identify the characteristics that fatigue and sleep disturbances will have impact, then select the digital measures (endpoints) to quantify them, followed by choosing the appropriate digital device/technology accordingly. We will then perform a pilot study to prioritise a few of these candidate digital endpoints for validation. We will test the performance of these digital endpoints in two NDD and four IMID in a large longitudinal study during which extensive relevant clinical data will be collected. If these digital endpoints were validated, we will seek support from EMA/FDA for their qualification. Patient users’ perspective, ethical, data privacy, legal and other regulatory issues will be taken into consideration in all aspects of our proposal. The resultant digital biobank from the longitudinal study will become an invaluable resource for future exploitation.

COLOSPEED: Development of a world-leading colorectal cancer research hub in the North East of England

COLO-SPEED will harness the enthusiasm of local endoscopy teams and build a long-term sustainable research infrastructure, using the patient contact point of endoscopy to develop a population-based “experimental platform”. This will recruit patients into a wide range of colorectal cancer (CRC) research studies across the disease continuum, creating a unique, world-leading, resource for CRC screening, prevention and early diagnosis (SPED) research, delivering benefits to patients, the wider population and society of the NE. COLO-SPEED will deliver a genuine 360-degree partnership with patients and public, putting them at the centre of prioritising, advising and informing CRC research and co-producing knowledge.

Engaging the workforce in real time: listening, understanding and responding to what matters most to our staff

Of the 1.4 million people who work in the NHS in England, more than 50% say they are unable to meet all of the conflicting demands on their time at work, and nearly 40% say that they’ve been unwell as a result of stress at work. Staff burnout in the NHS leads to low levels of staff engagement, which affects quality of patient care, patient experience, and staff and patient safety. At Northumbria Healthcare NHS Foundation Trust, there are currently limited way to have a meaningful, ongoing conversation with staff on what can be done to improve the workplace environment, and where improvement efforts should be focused. This project aims to address these gaps. The project aims to integrate real-time understanding of staff experience with Northumbria’s well-established real-time programme for capturing patient experience. The organisation-wide programme will capture everyday experiences of the workforce and introduce new technologies where possible to help capture these experiences in busy working environments. As many staff as possible will be encouraged to respond an annual staff experience survey and to quarterly pulse surveys. Programme infographics and a reporting framework will be deliberately appreciative, celebrating success and learning from what works, as well as where needs improvement. This evidence will inform improvement pilots led by eight teams across the trust, focused on improving staff experience and performance. Team results will be analysed and interpreted independently, and correlated with real-time patient experience measures, sickness and absence levels, team-level patient complaints, and safety data.