an article by Wendy Bryant and Ellen Adomako (University of Essex, Colchester, UK), Kevin Cordingley (Brunel University, London, UK) and Mary Birken (City University, London, UK) published in Disability and Society Volume 34 Issue 7-8 (2019)
Abstract
Understanding real-world experiences and issues is a priority for research funders, yet there are challenges in directly engaging with people for evaluation and investigation of the professional services they receive. Much professional work takes place within institutional restrictions, arising from legislation, policy and local practices.
Collaborative research is therefore complex but relevant for improving services.
This research programme started in 2002 with focus group research, led by occupational therapists based in a local National Health Service trust and a university, followed by eight further projects including a Photovoice project.
This programme and our perspectives from reflections suggest we do not always know who we are, what we want or who cares about research outcomes, but it is important to embrace the potential of activism, to energise and focus people for positive action, wherever they are based.
Showing posts with label user_involvement. Show all posts
Showing posts with label user_involvement. Show all posts
Friday, 22 November 2019
Tuesday, 14 May 2019
Semantics of patient choice: how the UK national guideline for depression silences patients
an article by Susan McPherson and Peter Beresford (University of Essex, Colchester, UK) published in Disability & Society Volume 34 Issue 3 (2019)
Abstract
Several stakeholders, including the National Survivor User Network and the British Psychological Society, have called for the National Institute for Health and Care Excellence (NICE) to include an up-to-date review of patient experience research in the new depression guideline.
In response, the Guideline Committee (GC) postponed publication, the guideline now due in February 2020. Yet the GC also stated it will not review patient experience research. Instead, it will incorporate a new element of ‘patient choice’, without elaborating what this entails.
Here, we attempt to untangle a number of similar sounding terms including ‘patient choice’, ‘patient preference’, ‘patient experience research’ and ‘service user involvement’ in terms of how they relate to the NICE depression guideline.
We argue that by conflating these concepts and implying that one will serve the purpose of another equally well, NICE risks leaving patients without a real voice, their perspectives buried in semantically void rhetorical jargon.
Full text (PDF 8pp)
Abstract
Several stakeholders, including the National Survivor User Network and the British Psychological Society, have called for the National Institute for Health and Care Excellence (NICE) to include an up-to-date review of patient experience research in the new depression guideline.
In response, the Guideline Committee (GC) postponed publication, the guideline now due in February 2020. Yet the GC also stated it will not review patient experience research. Instead, it will incorporate a new element of ‘patient choice’, without elaborating what this entails.
Here, we attempt to untangle a number of similar sounding terms including ‘patient choice’, ‘patient preference’, ‘patient experience research’ and ‘service user involvement’ in terms of how they relate to the NICE depression guideline.
We argue that by conflating these concepts and implying that one will serve the purpose of another equally well, NICE risks leaving patients without a real voice, their perspectives buried in semantically void rhetorical jargon.
Full text (PDF 8pp)
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