Choice for people with primary brain tumours
Research type
Research Study
Full title
Choice for people with primary brain tumours: How it is constructed, interpreted and enacted in the practices of healthcare.
IRAS ID
151975
Contact name
Paul Higgs
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
Z6364106/2014/06/68, UCL Data Protection number
Research summary
“Patient choice” has become a major concern in UK healthcare policy. Ever more we are expected to participate in decisions about our care and treatment. While this appears a welcome initiative, the reality of patient choice is not straightforward. Some are concerned that choice has become a major burden on patients. They argue that the expertise and experience of doctors is being devalued and that doctors are stripped of responsibility and accountability. Others have questioned whether patient choice really exists arguing instead that decisions are controlled more by institutional targets. For people with neurological conditions like primary brain tumours (PBT), choice is made more complicated because their abilities to communicate and reason might be affected by disease. This is the area with which we are concerned. We aim to explore how choice operates for people with PBT in the NHS with particular interest in how choices are supported and limited.
We will do this by accompanying a group people with PBT over the course of their illness. This will allow us to explore how choices are made, how they change and whether they are achieved as illness unfolds. We will observe places in the hospital where choices are presented, discussed and made. These include clinical consultations and weekly hospital team meetings. We will also interview people involved in making choices including patients, their families and hospital staff. Each person involved in the study will be interviewed several times allowing us to see how they respond to the changing circumstances of illness and what this means in terms of choice. We will analyse data by identifying common themes and patterns among people and from this produce a picture of choice as it exists in the NHS for people with PBT.
REC name
London - Harrow Research Ethics Committee
REC reference
14/LO/1277
Date of REC Opinion
6 Oct 2014
REC opinion
Further Information Favourable Opinion