ORCID Profile
0000-0001-9981-5637
Current Organisations
Manchester Academic Health Science Centre
,
Central Manchester University Hospitals NHS Foundation Trust
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Publisher: Springer Science and Business Media LLC
Date: 17-08-2022
DOI: 10.1186/S13063-022-06553-W
Abstract: Randomised trials, especially those intended to directly inform clinical practice and policy, should be designed to reflect all those who could benefit from the intervention under test should it prove effective. This does not always happen. The UK National Institute for Health and Care Research (NIHR) INCLUDE project identified many groups in the UK that are under-served by trials, including ethnic minorities. This guidance document presents four key recommendations for designing and running trials that include the ethnic groups needed by the trial. These are (1) ensure eligibility criteria and recruitment pathway do not limit participation in ways you do not intend, (2) ensure your trial materials are developed with inclusion in mind, (3) ensure staff are culturally competent and (4) build trusting partnerships with community organisations that work with ethnic minority groups. Each recommendation comes with best practice advice, public contributor testimonials, ex les of the inclusion problem tackled by the recommendation, or strategies to mitigate the problem, as well as a collection of resources to support implementation of the recommendations. We encourage trial teams to follow the recommendations and, where possible, evaluate the strategies they use to implement them. Finally, while our primary audience is those designing, running and reporting trials, we hope funders, grant reviewers and approvals agencies may also find our guidance useful.
Publisher: Springer Science and Business Media LLC
Date: 22-11-2018
Publisher: BMJ
Date: 10-2020
DOI: 10.1136/BMJOPEN-2020-039321
Abstract: We aimed to evaluate the impact of patient and public involvement (PPI) at each stage of the research cycle in a dementia research programme. We used monitoring forms to record the impact of the research programme’s PPI at different stages of research and qualitative interviews with all participants to evaluate the impact of PPI. We evaluated Research User Groups (RUGs—older people with dementia and care partners) which were established to provide PPI support for the research programme in multiple European sites. We purposively s led RUG members (n=34) and researchers (n=13) who had participated in PPI activities. Inclusion criteria for the study were: (a) RUG members who had participated in the research awareness training and in PPI activities and had the capacity to consent (b) researchers who involved RUGs in their work. Impact on the research: changes to the study conduct were made as a result of the feedback from RUGs. These included prioritisation of clinical recommendations, the wording of study information and recruitment materials, the content and layout of the user interface for a computerised memory test, interpretation of intervention results and advice on dissemination avenues. Impact on RUG members : they reported that involvement had given them a sense of purpose and satisfaction. Their perception of health research changed from being an exclusive activity to one, which lay people, could have meaningful involvement. Impact on researchers : PPI was a new way of working and interacting with PPI members had given them insight into the impact of their work on people living with dementia. PPI can have a substantial impact on dementia research and the people involved in the research. To justify the time and expense of PPI, the advantageous practical impacts of PPI should be systematically recorded and consistently reported.
Publisher: Wiley
Date: 18-08-2020
DOI: 10.1111/HEX.13096
Publisher: Springer Science and Business Media LLC
Date: 14-08-2019
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
No related grants have been discovered for Bella Starling.