Rights statement: This is an Accepted Manuscript of an article published by Taylor & Francis in Disability and Society on 24/06/2017, available online: http://www.tandfonline.com/10.1080/09687599.2017.1339588
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Final published version
Research output: Contribution to Journal/Magazine › Journal article › peer-review
Research output: Contribution to Journal/Magazine › Journal article › peer-review
}
TY - JOUR
T1 - Public health, research and rights
T2 - the perspectives of deliberation panels with politically and socially active disabled people
AU - Berghs, Maria
AU - Atkin, Karl
AU - Graham, Hilary
AU - Hatton, Chris
AU - Thomas, Carol
N1 - This is an Accepted Manuscript of an article published by Taylor & Francis in Disability and Society on 24/06/2017, available online: http://www.tandfonline.com/10.1080/09687599.2017.1339588
PY - 2017
Y1 - 2017
N2 - Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England's National Institute for Health Research (NIHR) to review the implications for public health of theories and models of disability. This part of the study focused on the development of a tool or decision aid to promote ethical inclusion of disabled people in public health randomised controlled trials (RCTs) and evaluative research. The tool was introduced at four regional deliberating panels' involving politically and socially active disabled people. In addition, we held a panel with public health professionals. The deliberation panels debated how the focus of public health was narrowing, why disability was excluded and positive and negative issues with using rights to guide research and evaluative practice. Politically active disabled people argued for a social model of human rights to guide any rights based tools or decision aids in public health and disability research.
AB - Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England's National Institute for Health Research (NIHR) to review the implications for public health of theories and models of disability. This part of the study focused on the development of a tool or decision aid to promote ethical inclusion of disabled people in public health randomised controlled trials (RCTs) and evaluative research. The tool was introduced at four regional deliberating panels' involving politically and socially active disabled people. In addition, we held a panel with public health professionals. The deliberation panels debated how the focus of public health was narrowing, why disability was excluded and positive and negative issues with using rights to guide research and evaluative practice. Politically active disabled people argued for a social model of human rights to guide any rights based tools or decision aids in public health and disability research.
KW - Disability
KW - public health
KW - evidence
KW - rights
KW - research and social model
KW - INTELLECTUAL DISABILITIES
KW - WORLD REPORT
KW - KNOWLEDGE
KW - FUTURE
KW - POLICY
KW - CARE
KW - UK
U2 - 10.1080/09687599.2017.1339588
DO - 10.1080/09687599.2017.1339588
M3 - Journal article
VL - 32
SP - 945
EP - 965
JO - Disability and Society
JF - Disability and Society
SN - 0968-7599
IS - 7
ER -