Title: Harnessing routinely collected UK health data to improve access to care for under-researched medical conditions such as sleep disorders
Funder: Department of Health and Social Care

Abstract: Research question Which healthcare services are used by people with Obstructive Sleep Apnoea (OSA) and narcolepsy before and after diagnosis, what comorbidities do they experience, and how could pathways to diagnosis and care be improved? Background People with uncommon or low-profile medical conditions experience delayed diagnosis, poor access to specialist care, restricted access to expensive treatments, and a lack of joined-up treatment. Policy initiatives to improve healthcare are hampered by a lack of evidence describing the impact of these conditions on healthcare use and comorbidities. Routinely collected NHS data provide an opportunity to develop this evidence. To date, these data have mostly been used to study common conditions and research has not always been used to influence policy. The sleep disorders, OSA and narcolepsy, are good examples of under researched medical conditions for which access to healthcare could be improved using evidence produced using NHS data. Aims and objectives Phase A: Develop and validate methods to identify, characterise and follow-up people with sleep disorders in routinely collected UK health data in order to understand the benefits and limitations of using routinely collected health data to study these and other uncommon and low-profile conditions. Phase B: Measure healthcare resource before and after diagnosis with sleep disorders to understand the reasons for and impact of delayed diagnosis, and identify inequalities in access to healthcare after diagnosis. Describe associations between sleep disorders and other mental and physical health conditions to identify differential diagnoses and comorbidities that need treating alongside sleep disorders. Phase C: Identify barriers to early referral of people reporting excessive daytime sleepiness and other symptoms typical of narcolepsy and OSA by general practitioners to sleep specialists. Methods This project will be largely based on cohorts of people with OSA and narcolepsy collected from Clinical Practice Research Datalink (CPRD) primary care databases linked to hospitalisation data. Quantitative methods will include validation questionnaires in phase 1 and descriptive, cohort and case control studies in phase 2. In phase 3, qualitative methods will be used to uncover drivers and barriers to early diagnosis. Timelines for Delivery This will be a four-year project starting in October 2021. Phase completion milestones are: Phase 1 Sept 2023 Phase 2 March 2025 Phase 3 September 2025Anticipated Impact and dissemination My project would provide materials to empower people, patient groups and clinicians to drive healthcare policy promoting: Earlier recognition of the symptoms of sleep disorders leading to reduced misdiagnoses, unnecessary referrals, and development of avoidable comorbidities. Improved access to healthcare through expansion of sleep services and training and better joined up care of sleep disorders and related comorbidities.Findings will be shared through research publications; clinical, research and patient conference presentations and workshops; social media communications and infographics. These will include materials co-developed with people with these conditions to share with their GPs and sleep specialists. This work on sleep disorders will provide an exemplar for the use of routinely collected healthcare data and qualitative research to improve access to healthcare for other under-researched medical conditions.

Lay abstract: Aim(s) of the research My research and the materials I produce will ultimately help people with uncommon or low-profile medical conditions, and the organisations and doctors who support them, to benefit from: Earlier recognition of the symptoms of these conditions leading to reduced misdiagnoses, unnecessary referrals, and development of related conditions. Improved access to healthcare through expansion of specialist services and training and better joined up care of these conditions and related comorbidities.In this four-year project, I will use the sleep disorders obstructive sleep apnoea (OSA) and narcolepsy as examples, answering the overarching question: 'Which healthcare services are used by people with OSA and narcolepsy before and after diagnosis, what comorbidities do they experience, and how could pathways to diagnosis and care be improved?' Specific aims are to: Understand how data that is collected by the NHS can be used to study sleep disorders. Describe how many people in the UK have been diagnosed with these sleep disorders, and how this varies by region of the UK and patient characteristics. Describe how often people with sleep disorders visit general practitioners and hospital specialists in the years before and after diagnosis with their sleep disorder compared to a control group without these conditions. Describe medical conditions that people with sleep disorders are diagnosed with before and after diagnosis with their sleep disorder compared to a control group without these conditions. Understand how general practitioners decide what to do when patients report excessive daytime sleepiness and other symptoms of sleep disorders. Inform future research programmes studying other uncommon and low-profile medical conditions.Background to the research People with uncommon or low-profile medical conditions experience delayed diagnosis, poor access to specialist care, restricted access to expensive treatments, and a lack of joined-up treatment particularly if they suffer from more than one medical condition. To change this, we need to produce evidence that describes how people with these conditions are diagnosed and treated in the NHS and identify areas for improvement. This will inform local and national policies. Healthcare data collected by the NHS provide an opportunity to develop this evidence. However, to date these data have mostly been used to study common conditions and research has not always been used to influence policy. The sleep disorders, OSA and narcolepsy, are good examples of under researched medical conditions for which access to healthcare could be improved using evidence produced using NHS data. Design and methods used I will use NHS data to identify records of people with sleep disorders and a control group without these conditions. I will collect and describe information about healthcare use and other medical diagnoses, comparing these two groups. I will use validation studies to confirm the accuracy of this information. I will interview GPs to understand how they decide what to do when people report excessive daytime sleepiness and other symptoms of sleep disorders. Patient/service user, carer and public involvement Patient Public Involvement has informed my lay summary, objectives for the qualitative research and dissemination plans. A six-person PPI advisory group will be involved in guiding the research and designing materials to disseminate findings. Employees or Trustees of patient organisations will be members of my steering group. Dissemination Findings will be shared through research publications; clinical, research and patient conference presentations and workshops; social media communications and infographics. These will include materials that people with these conditions can share with their GPs and sleep specialists.

Research activity codes: 4.2 EVALUATION OF MARKERS AND TECHNOLOGIES
Health categories: NEUROLOGICAL