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A patient and public involvement (PPI) toolkit for meaningful and flexible involvement in clinical trials – a work in progress

Overview of attention for article published in Research Involvement and Engagement, April 2016
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About this Attention Score

  • In the top 5% of all research outputs scored by Altmetric
  • Among the highest-scoring outputs from this source (#34 of 151)
  • High Attention Score compared to outputs of the same age (95th percentile)
  • High Attention Score compared to outputs of the same age and source (86th percentile)

Mentioned by

twitter
75 tweeters
facebook
1 Facebook page

Citations

dimensions_citation
35 Dimensions

Readers on

mendeley
96 Mendeley
Title
A patient and public involvement (PPI) toolkit for meaningful and flexible involvement in clinical trials – a work in progress
Published in
Research Involvement and Engagement, April 2016
DOI 10.1186/s40900-016-0029-8
Pubmed ID
Authors

Heather J. Bagley, Hannah Short, Nicola L. Harman, Helen R. Hickey, Carrol L. Gamble, Kerry Woolfall, Bridget Young, Paula R. Williamson

Abstract

Funders of research are increasingly requiring researchers to involve patients and the public in their research. Patient and public involvement (PPI) in research can potentially help researchers make sure that the design of their research is relevant, that it is participant friendly and ethically sound. Using and sharing PPI resources can benefit those involved in undertaking PPI, but existing PPI resources are not used consistently and this can lead to duplication of effort. This paper describes how we are developing a toolkit to support clinical trials teams in a clinical trials unit. The toolkit will provide a key 'off the shelf' resource to support trial teams with limited resources, in undertaking PPI. Key activities in further developing and maintaining the toolkit are to: ● listen to the views and experience of both research teams and patient and public contributors who use the tools; ● modify the tools based on our experience of using them; ● identify the need for future tools; ● update the toolkit based on any newly identified resources that come to light; ● raise awareness of the toolkit and ● work in collaboration with others to either develop or test out PPI resources in order to reduce duplication of work in PPI. Background Patient and public involvement (PPI) in research is increasingly a funder requirement due to the potential benefits in the design of relevant, participant friendly, ethically sound research. The use and sharing of resources can benefit PPI, but available resources are not consistently used leading to duplication of effort. This paper describes a developing toolkit to support clinical trials teams to undertake effective and meaningful PPI. Methods The first phase in developing the toolkit was to describe which PPI activities should be considered in the pathway of a clinical trial and at what stage these activities should take place. This pathway was informed through review of the type and timing of PPI activities within trials coordinated by the Clinical Trials Research Centre and previously described areas of potential PPI impact in trials. In the second phase, key websites around PPI and identification of resources opportunistically, e.g. in conversation with other trialists or social media, were used to identify resources. Tools were developed where gaps existed. Results A flowchart was developed describing PPI activities that should be considered in the clinical trial pathway and the point at which these activities should happen. Three toolkit domains were identified: planning PPI; supporting PPI; recording and evaluating PPI. Four main activities and corresponding tools were identified under the planning for PPI: developing a plan; identifying patient and public contributors; allocating appropriate costs; and managing expectations. In supporting PPI, tools were developed to review participant information sheets. These tools, which require a summary of potential trial participant characteristics and circumstances help to clarify requirements and expectations of PPI review. For recording and evaluating PPI, the planned PPI interventions should be monitored in terms of impact, and a tool to monitor public contributor experience is in development. Conclusions This toolkit provides a developing 'off the shelf' resource to support trial teams with limited resources in undertaking PPI. Key activities in further developing and maintaining the toolkit are to: listen to the views and experience of both research teams and public contributors using the tools, to identify the need for future tools, to modify tools based on experience of their use; to update the toolkit based on any newly identified resources that come to light; to raise awareness of the toolkit and to work in collaboration with others to both develop and test out PPI resources in order to reduce duplication of work in PPI.

Twitter Demographics

The data shown below were collected from the profiles of 75 tweeters who shared this research output. Click here to find out more about how the information was compiled.

Mendeley readers

The data shown below were compiled from readership statistics for 96 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
United States 1 1%
Unknown 95 99%

Demographic breakdown

Readers by professional status Count As %
Researcher 18 19%
Student > Ph. D. Student 16 17%
Student > Master 15 16%
Student > Doctoral Student 8 8%
Other 7 7%
Other 21 22%
Unknown 11 11%
Readers by discipline Count As %
Medicine and Dentistry 28 29%
Nursing and Health Professions 16 17%
Psychology 12 13%
Biochemistry, Genetics and Molecular Biology 6 6%
Social Sciences 6 6%
Other 10 10%
Unknown 18 19%

Attention Score in Context

This research output has an Altmetric Attention Score of 44. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 05 March 2019.
All research outputs
#391,119
of 13,454,351 outputs
Outputs from Research Involvement and Engagement
#34
of 151 outputs
Outputs of similar age
#13,068
of 264,823 outputs
Outputs of similar age from Research Involvement and Engagement
#2
of 15 outputs
Altmetric has tracked 13,454,351 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 97th percentile: it's in the top 5% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 151 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 28.9. This one has done well, scoring higher than 76% of its peers.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 264,823 tracked outputs that were published within six weeks on either side of this one in any source. This one has done particularly well, scoring higher than 95% of its contemporaries.
We're also able to compare this research output to 15 others from the same source and published within six weeks on either side of this one. This one has done well, scoring higher than 86% of its contemporaries.