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Exploring areas of consensus and conflict around values underpinning public involvement in health and social care research: a modified Delphi study.

ABSTRACT: There is growing interest in the potential benefits of public involvement (PI) in health and social care research. However, there has been little examination of values underpinning PI or how these values might differ for different groups with an interest in PI in the research process. We aimed to explore areas of consensus and conflict around normative, substantive and process-related values underpinning PI.Mixed method, three-phase, modified Delphi study, conducted as part of a larger multiphase project.The UK health and social care research community.Stakeholders in PI in research, defined as: clinical and non-clinical academics, members of the public, research managers, commissioners and funders; identified via research networks, online searches and a literature review.We identified high levels of consensus for many normative, substantive and process-related issues. However, there were also areas of conflict in relation to issues of bias and representativeness, and around whether the purpose of PI in health and social care research is to bring about service change or generate new knowledge. There were large differences by group in the percentages endorsing the ethical justification for PI and the argument that PI equalises power imbalances. With regard to practical implementation of PI, research support infrastructures were reported as lacking. Participants reported shortcomings in the uptake and practice of PI. Embedding PI practice and evaluation in research study designs was seen as fundamental to strengthening the evidence base.Our findings highlight the extent to which PI is already embedded in research. However, they also highlight a need for 'best practice' standards to assist research teams to understand, implement and evaluate PI. These findings have been used in developing a Public Involvement Impact Assessment Framework (PiiAF), which offers guidance to researchers and members of the public involved in the PI process.

SUBMITTER: Snape D

PROVIDER: S-EPMC3902382 | biostudies-literature | 2014 Jan

REPOSITORIES: biostudies-literature

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Exploring areas of consensus and conflict around values underpinning public involvement in health and social care research: a modified Delphi study.

Snape D D Kirkham J J Preston J J Popay J J Britten N N Collins M M Froggatt K K Gibson A A Lobban F F Wyatt K K Jacoby A A

BMJ open 20140110 1

<h4>Objective</h4>There is growing interest in the potential benefits of public involvement (PI) in health and social care research. However, there has been little examination of values underpinning PI or how these values might differ for different groups with an interest in PI in the research process. We aimed to explore areas of consensus and conflict around normative, substantive and process-related values underpinning PI.<h4>Design</h4>Mixed method, three-phase, modified Delphi study, conduc ...[more]

PMID: 24413356

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Project description:ObjectiveTo explore areas of consensus and conflict in relation to perceived public involvement (PI) barriers and drivers, perceived impacts of PI and ways of evaluating PI approaches in health and social care research.BackgroundInternationally and within the UK the recognition of potential benefits of PI in health and social care research is gathering momentum and PI is increasingly identified by organisations as a prerequisite for funding. However, there is relatively little examination of the impacts of PI and how those impacts might be measured.DesignMixed method, three-phase, modified Delphi technique, conducted as part of a larger MRC multiphase project.SampleClinical and non-clinical academics, members of the public, research managers, commissioners and funders.FindingsThis study found high levels of consensus about the most important barriers and drivers to PI. There was acknowledgement that tokenism was common in relation to PI; and strong support for the view that demonstrating the impacts and value of PI was made more difficult by tokenistic practice. PI was seen as having intrinsic value; nonetheless, there was clear support for the importance of evaluating its impact. Research team cohesion and appropriate resources were considered essential to effective PI implementation. Panellists agreed that PI can be challenging, but can be facilitated by clear guidance, together with models of good practice and measurable standards.ConclusionsThis study is the first to present empirical evidence of the opinions voiced by key stakeholders on areas of consensus and conflict in relation to perceived PI barriers and drivers, perceived impacts of PI and the need to evaluate PI. As such it further contributes to debate around best practice in PI, the potential for tokenism and how best to evaluate the impacts of PI. These findings have been used in the development of the Public Involvement Impact Assessment Framework (PiiAF), an online resource which offers guidance to researchers and members of the public involved in the PI process.

Project description:Africa is predicted to be highly vulnerable to 21st century climatic changes. Assessing the impacts of these changes on Africa's biodiversity is, however, plagued by uncertainties, and markedly different results can be obtained from alternative bioclimatic envelope models or future climate projections. Using an ensemble forecasting framework, we examine projections of future shifts in climatic suitability, and their methodological uncertainties, for over 2500 species of mammals, birds, amphibians and snakes in sub-Saharan Africa. To summarize a priori the variability in the ensemble of 17 general circulation models, we introduce a consensus methodology that combines co-varying models. Thus, we quantify and map the relative contribution to uncertainty of seven bioclimatic envelope models, three multi-model climate projections and three emissions scenarios, and explore the resulting variability in species turnover estimates. We show that bioclimatic envelope models contribute most to variability, particularly in projected novel climatic conditions over Sahelian and southern Saharan Africa. To summarize agreements among projections from the bioclimatic envelope models we compare five consensus methodologies, which generally increase or retain projection accuracy and provide consistent estimates of species turnover. Variability from emissions scenarios increases towards late-century and affects southern regions of high species turnover centred in arid Namibia. Twofold differences in median species turnover across the study area emerge among alternative climate projections and emissions scenarios. Our ensemble of projections underscores the potential bias when using a single algorithm or climate projection for Africa, and provides a cautious first approximation of the potential exposure of sub-Saharan African vertebrates to climatic changes. The future use and further development of bioclimatic envelope modelling will hinge on the interpretation of results in the light of methodological as well as biological uncertainties. Here, we provide a framework to address methodological uncertainties and contextualize results.

Project description:IntroductionThere is currently limited guidance for researchers on Patient and Public Involvement (PPI) for preclinical spinal cord research, leading to uncertainty about design and implementation. This study aimed to develop evidence-informed principles to support preclinical spinal cord researchers to incorporate PPI into their research.MethodsThis study used a modified Delphi method with the aim of establishing consensus on a set of principles for PPI in spinal cord research. Thirty-eight stakeholders including researchers, clinicians and people living with spinal cord injury took part in the expert panel. Participants were asked to rate their agreement with a series of statements relating to PPI in preclinical spinal cord research over two rounds. As part of Round 2, they were also asked to rate statements as essential or desirable.ResultsThirty-eight statements were included in Round 1, after which five statements were amended and two additional statements were added. After Round 2, consensus (> 75% agreement) was reached for a total of 27 principles, with 13 rated as essential and 14 rated as desirable. The principles with highest agreement related to diversity in representation among PPI contributors, clarity of the purpose of PPI and effective communication.ConclusionThis research developed a previously unavailable set of evidence-informed principles to inform PPI in preclinical spinal cord research. These principles provide guidance for researchers seeking to conduct PPI in preclinical spinal cord research and may also inform PPI in other preclinical disciplines.Patient and public involvement statementThis study was conducted as part of a project aiming to develop PPI in preclinical spinal cord injury research associated with an ongoing research collaboration funded by the Irish Rugby Football Union Charitable Trust (IRFU CT) and the Science Foundation Ireland Centre for Advanced Materials and BioEngineering Research (SFI AMBER), with research conducted by the Tissue Engineering Research Group (TERG) at the RCSI University of Medicine and Health Sciences. The project aims to develop an advanced biomaterials platform for spinal cord repair and includes a PPI Advisory Panel comprising researchers, clinicians and seriously injured rugby players to oversee the work of the project. PPI is included in this study through the involvement of members of the PPI Advisory Panel in the conceptualisation of this research, review of findings, identification of key points for discussion and preparation of the study manuscript as co-authors.

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Exploring areas of consensus and conflict around values underpinning public involvement in health and social care research: a modified Delphi study.

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Exploring areas of consensus and conflict around values underpinning public involvement in health and social care research: a modified Delphi study.

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