Abstract
BackgroundThe publication of the United Kingdom (UK) Standards for Public Involvement (PI) (UK Standards) in research drew a clear line in the sand regarding the importance of utilising the unique experience, skills and expertise that lay people may offer to the development, conduct and dissemination of clinical research. The UK Standards provide a benchmark which researchers should aim to achieve, yet its implementation continues to be a step wise iterative process of change management. A recent evaluation by a regional research group has suggested that our understanding of PI is enhanced through reflection on the UK Standards. We report on the utility of PI in the design, conduct and dissemination of the HIDDen study, a national, multicentre clinical study based across three UK centres.MethodsA retrospective review of PI within the HIDDen study was conducted using field notes taken by the lead author from interactions throughout their involvement as a lay representative on the study. Key members of the HIDDen study were interviewed and data analysed to explore adherence to the UK Standards.ResultsThere was universal support for PI across the study management group with genuine inclusivity of lay members of the committee. All six of the UK Standards were met to varying degrees. The greatest opportunities lay in ‘working together’ and ‘support and learning’. There were challenges meeting ‘governance’ with evidence of participation in decision making but less evidence of opportunities in management, regulation, leadership.ConclusionThis study concurs with previous research supporting the utility of the Standards in the conduct and evaluation of PI in clinical research. To our knowledge this is the first multi-national study to be evaluated against the UK Standards.
Highlights
The publication of the United Kingdom (UK) Standards for Public Involvement (PI) (UK Standards) in research drew a clear line in the sand regarding the importance of utilising the unique experience, skills and expertise that lay people may offer to the development, conduct and dissemination of clinical research
Theoretical rationale and influences -concepts and theory development We report on the integration and development of public involvement (PI) within the Hospice Inpatient Deep vein thrombosis Detection study (HIDDen) study through its use of the UK Standards for Public Involvement as benchmarks
We have reported on the successful, multi-factorial aspects of PI in a national multi-centre clinical research study, focusing on the impact the public contributions made to the design, conduct, and reporting of the study
Summary
The publication of the United Kingdom (UK) Standards for Public Involvement (PI) (UK Standards) in research drew a clear line in the sand regarding the importance of utilising the unique experience, skills and expertise that lay people may offer to the development, conduct and dissemination of clinical research. This document was subjected to a rigorous 4 month consultation period involving the public, academics, charities and involvement practitioners Through this process, the standards were modified, with particular changes involving the decision to remove the indicators for each standard. The standards were modified, with particular changes involving the decision to remove the indicators for each standard They were updated to the UK Standards for Public Involvement and published in November 2019 following a further pilot phase [9]. They highlight six key values of involvement, namely: respect, support, transparency, responsiveness, fairness of opportunity, and accountability [10]. It has been suggested that the breadth of “off-the-shelf” published frameworks have limited transferability and stakeholders might consider codesigning their own frameworks based on a menu of evidence-based resources
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