About the Project
People with epilepsy (PWE) from deprived areas are less likely to become seizure-free, more likely to access emergency care and at greater risk of premature death. Many struggle to access specialist epilepsy care and are at risk of suboptimal treatment. Care coordination can be particularly poor for those socially disadvantaged.
Specialist services are thus being asked to innovate, identify and care for those currently underserved. How though can they manage any increased demand? The workforce is small, struggling to achieve wating-time targets and respond to requests for help.
Taking a risk-stratified approach to care delivery may allow existing capacity to be used more efficiently – e.g., rather than patients under their care, as standard, being offered 6/12 month face-to-face follow-ups, appointments could be offered on the basis of need. Those seizure free might be provided with a longer follow up interval, seen by a general neurologist or offered telephone/video review; those with ongoing challenges (e.g., deteriorating seizure control, mental health, pregnancy) would be reviewed sooner.
Such an approach requires accessible, up-to-date data. This necessitates a transformation in how specialists capture, collate and use data. Services cannot currently access information on the health of PWE between appointments (e.g., seizure data, emergency contacts, prescription collection). Also, their own data is frequently unusable, captured within free-text letters. Their information is also not shared with primary and emergency services (e.g., seizure first aid plans).
The Walton Centre thus has the ambition of leading a change. They seek to develop a new epilepsy care system that enables risk-stratified care. Clinicians would capture key data at clinic using a standardised electronic proforma, patients contribute by uploading seizure data and primary and emergency care data would be captured.
The envisioned system would require a change in how clinicians practice and represents, in many instances, a different approach for patients to their care. It is vital therefore that the intervention is coproduced. This PhD seeks to enable this by delivering evidence on stakeholders’ views of what it should contain, how it should work and then initial impressions of it.
This mixed-methods project would involve the following:
1- Survey to systematically identify what approaches England’s regional neuroscience and neurology centres are taking to offer risk-stratified care;
2- Complete a number of Knowledge Exchange workshops across England to obtain health professional and data controllers views on what data should be included on the standardised electronic epilepsy proforma, how it should be captured and coded and why;
3- Qualitatively explore patients’ views, concerns and expectations on the principle of risk stratification and the new epilepsy care system.
4- Collate information from 1-3 and feed this back to Walton Centre for system development.
5- If time permits, secure qualitative feedback from clinicians using initial iteration of system developed for use at the Walton Centre and patients whose care has been affected.
Application is by CV and covering letter. The covering letter must detail your interest in the studentship, related experience and training and suitability for the position. Applications are to be sent to Dr Adam Noble, [Email Address Removed]
Funding Notes
The studentships will be for 4 years full-time (subject to satisfactory progress) and will cover the cost of tuition fees at Home/EU rates. A stipend in line with the UK Research Council is payable at £15009 per annum, and an additional allowance of up to £1000 per year will be paid for approved research costs. Please note that funding is only available for the first 3 years but a 4th year is unfunded for writing up.
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