Patients’ priorities for research into epilepsy

A survey of patient groups 2008
As part of a larger project about future clinical research in the field of epilepsy, DUETs (a component of the NHS National Library for Health) invited relevant patient organisations to respond to a short online survey, sharing their significant knowledge of the needs and wants of the epilepsy patients they represent.

Why this survey?
DUETs wanted to know what questions epilepsy patients have about their treatment—questions that doctors cannot currently answer. In other words, DUETs wished to gather details about those aspects of treatment that patients with epilepsy would like to see addressed by medical research.

The DUETs survey is a first step in giving epilepsy patients/carers a bigger and more potent voice in medical research. Medical research could do a lot more for people with epilepsy. Previously, most research has been primarily designed and conducted by doctors, scientists, and industry—healthcare stakeholders who may not always have an intimate knowledge of the wants and needs of patients. The DUETs survey aimed to find out what epilepsy patients themselves regard as their unmet treatment needs.

How will the survey results create change?
The survey results will feed into a forthcoming DUETs list of uncertainties in the field of epilepsy research—a catalogue that medical science should be addressing. The list will be placed in the public domain, ready to be acted upon by scientists.

The survey was undertaken by PatientView, on behalf of DUETS and The James Lind Alliance in collaboration with the University of Wales Swansea and the University Hospital of Wales.

For a copy of the report click here [PDF]