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‘Is it worth doing?’ Measuring the impact of patient and public involvement in research

Overview of attention for article published in Research Involvement and Engagement, July 2015
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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 (#20 of 159)
  • High Attention Score compared to outputs of the same age (96th percentile)

Mentioned by

blogs
1 blog
twitter
74 tweeters
facebook
1 Facebook page
googleplus
1 Google+ user

Citations

dimensions_citation
60 Dimensions

Readers on

mendeley
130 Mendeley
Title
‘Is it worth doing?’ Measuring the impact of patient and public involvement in research
Published in
Research Involvement and Engagement, July 2015
DOI 10.1186/s40900-015-0008-5
Pubmed ID
Authors

Kristina Staley

Abstract

Much of the current debate around the impact of patient/public involvement on research focuses on the lack of empirical data. While a number of systematic literature reviews have reported the various ways in which involvement makes a difference to research and the people involved, this evidence has been criticised as being weak and anecdotal. It is argued that robust evidence is still required. This review reflects on the use of quantitative approaches to evaluating impact. It concludes that the statistical evidence is weakened by not paying sufficient attention to the context in which involvement takes place and the way it is carried out. However, if scientific (systematic, quantitative, empirical) approaches are designed in a way to take these factors into account, they might not generate knowledge that is useful beyond the original context. Such approaches might not therefore enhance our understanding of when, why and how involvement makes a difference. In the context of individual research projects where researchers collaborate with patients/the public, researchers often acquire 'new' knowledge about life with a health condition. This new understanding can be described as experiential knowledge-'knowledge in context'-that researchers gain through direct experience of working with patients/the public. On this basis, researchers' accounts of their experience potentially provide a source of insight and learning to influence others, in the same way that the patient experience helps to shape research. These accounts could be improved by increasing the detail provided about context and mechanism. One of the most important contextual factors that influence the outcome of involvement is the researchers themselves and the skills, assumptions, values and priorities they start with. At the beginning of any research project, the researchers 'don't know what they don't know' until they involve patients/the public. This means that the impact of involvement within any particular project is somewhat unpredictable. The answer to the question 'Is involvement worth doing?' will always be 'It depends'. Further exploration of the contextual and mechanistic factors which influence outcomes could give a stronger steer to researchers but may never accurately predict any specific impact. In recent years, there has been considerable interest in finding out what difference patient and public involvement makes to research projects. The evidence published so far has been criticised for being weak and anecdotal. Some people argue we need robust evidence of impact from scientific studies of involvement. In this review, I consider examples of where impact has been measured using statistical methods. I conclude that the statistical evidence is weak, if the studies do not consider the context in which involvement takes place and the way that it is done. Studies designed to take this into account give us more confidence that the involvement did make a difference to that particular project. They do not tell us whether the same impact will occur in the same way in other projects and therefore have limited value. Researchers gain an understanding of involvement through their direct experience of working with patients and the public. This is 'knowledge in context' or 'insight' gained in the same way that patients gain expertise through their direct experience of a health condition. This means that detailed accounts of involvement from researchers already provide valuable learning to others, in the same way that patients' insights help shape research. However, the impact of involvement will always be somewhat unpredictable, because at the start of any project researchers 'don't know what they don't know'-they do not know precisely what problems they might anticipate, until the patients/public tell them.

Twitter Demographics

The data shown below were collected from the profiles of 74 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 130 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
United Kingdom 4 3%
United States 2 2%
Australia 1 <1%
Unknown 123 95%

Demographic breakdown

Readers by professional status Count As %
Researcher 30 23%
Student > Master 28 22%
Student > Ph. D. Student 21 16%
Student > Postgraduate 10 8%
Other 10 8%
Other 22 17%
Unknown 9 7%
Readers by discipline Count As %
Medicine and Dentistry 34 26%
Social Sciences 25 19%
Nursing and Health Professions 21 16%
Psychology 16 12%
Biochemistry, Genetics and Molecular Biology 4 3%
Other 18 14%
Unknown 12 9%

Attention Score in Context

This research output has an Altmetric Attention Score of 53. 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 07 March 2018.
All research outputs
#336,305
of 13,734,629 outputs
Outputs from Research Involvement and Engagement
#20
of 159 outputs
Outputs of similar age
#7,149
of 233,848 outputs
Outputs of similar age from Research Involvement and Engagement
#1
of 3 outputs
Altmetric has tracked 13,734,629 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 159 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 28.8. This one has done well, scoring higher than 87% 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 233,848 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 96% of its contemporaries.
We're also able to compare this research output to 3 others from the same source and published within six weeks on either side of this one. This one has scored higher than all of them