Technologically-enabled epilepsy care (Case 6 - Studies in Co-creating Assisted Living Solutions research programme)


Study ID: 36342
Short Title: Technologically-enabled epilepsy care V1
Organisation: Poole Hospital NHS Foundation Trust
Location: Poole General Hospital
Condition: Epilepsy
Main Specialty: Neurological disorders
Expected End Date: 01/10/2019
Postcode: BH15 2JB
Contact Name: R&D department
Contact Email: R&I@poole.nhs.uk
Active: Yes

Inclusion Criteria

GENERAL INCLUSION CRITERIA Participants willing and able to give informed consent for participation in the study, as well as participants who lack the capacity to consent, following appropriate procedures. Male or Female, aged 18 years or above. INCLUSION CRITERIA FOR PATIENT AND CARER PARTICIPANTS Patients will be included if they are living with epilepsy and attending one of the clinics of the Dorset Epilepsy Service. Carers and family members of people living with epilepsy will also be included as potential participants in this study, together with the people they are caring for. Patients will be included primarily in relation to their use of the epilepsy technology or to explore why they have previously refused or deemed ineligible to use the technology. Specific emphasis will be placed on older people over the age of 65. INCLUSION CRITERIA FOR STAFF PARTICIPANTS Staff will be included if their job description (formal or informal) includes an aspect of using, developing or implementing epilepsy-related technologies and/or services being investigated in this study. INCLUSION CRITERIA FOR STAKEHOLDERS National stakeholders will be included if their job description or role includes innovation, policymaking or regulation in relation to epilepsy-related technologies and/or services investigated in this study.

Exclusion Criteria

GENERAL EXCLUSION CRITERIA Inability to read or speak English EXCLUSION CRITERIA FOR PATIENTS Severe co-morbidity preventing participation (e.g. severe visual or cognitive impairment). Unless advised differently by the lead Consultant for the Dorset Epilepsy Service, we will include people with learning disabilities following appropriate procedures.

Study summary:

This project is part of a large research programme looking at different areas of assisted living technologies and their integration in particular service models for a range of health conditions (Studies in Co-Creating Assisted Living Solutions – SCALS). This case study focuses on how people living with epilepsy use technologies to manage their condition and how these technologies can be better embedded in the health service to improve care. We will study the use of a specific system currently under development by a private/public consortium that aims to bring together wearable devices, smartphone apps, shared care records, information visualisations and machine learning in one integrated system. Our aim is to gain a rich understanding of participant experiences using and developing this system so that it works in ways that prove to be useful, purposeful and ethical for all those involved. We will aim to illuminate the challenges of achieving technologically-enabled epilepsy care and develop approaches to co-designing technologies in ways that meet peoples’ needs. The case study will be driven by participatory action research principles and will use ethnographic methods: interviews with patients, carers, health professionals and technology developers; ethnographic observation of technology use and interaction in the epilepsy clinic; collection of photos, videos and documents; and co-design workshops. The case study will be led by the University of Oxford and is funded by the Wellcome Trust and the Academy of Medical Sciences.


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