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Missed opportunities for impact in patient and carer involvement: a mixed methods case study of research priority setting

Overview of attention for article published in Research Involvement and Engagement, August 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 (#34 of 386)
  • High Attention Score compared to outputs of the same age (96th percentile)
  • High Attention Score compared to outputs of the same age and source (80th percentile)

Mentioned by

twitter
86 tweeters
facebook
1 Facebook page
googleplus
1 Google+ user

Citations

dimensions_citation
21 Dimensions

Readers on

mendeley
76 Mendeley
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Title
Missed opportunities for impact in patient and carer involvement: a mixed methods case study of research priority setting
Published in
Research Involvement and Engagement, August 2015
DOI 10.1186/s40900-015-0007-6
Pubmed ID
Authors

R. Snow, J C Crocker, S. Crowe

Abstract

Healthcare workers want to listen more to patients and their carers in all sorts of areas of healthcare. This can include choosing topics for medical research. We looked at how patients and carers have helped to choose topics for research about type I diabetes. We aimed to find out if, and why, researchers often rejected their choices. We looked at a project which brought together patients, carers and healthcare workers to choose topics for research about type 1 diabetes. The group first asked patients, carers and healthcare workers to suggest ideas for research questions. But the group had to follow rules about what counted as a good research question. Some people's ideas did not count as good research questions, and they were rejected at the start. We looked at who were most likely to have their ideas rejected at the start. We found that patients and carers were most likely to have a suggestion rejected. Then we looked at the rejected questions in detail. They were mostly about curing diabetes, preventing diabetes and understanding how diabetes works. There were also some questions about access to medicines and the quality of care. Researchers should ask patients and carers for help deciding what counts as a good research question from the start of projects like these. We should also think about what might be getting in the way of patients and carers making more of a difference in research. Background Patients and carers are increasingly involved in deciding on topics for medical research. However, so far, it has been difficult to gain an accurate picture of the impact of such involvement because of poor reporting and evaluation in published studies to date. This study aimed to explore how a partnership of patients, carers, healthcare professionals and organisations identified questions for future research and why patients and carers had a limited impact on this process. Methods In the first stage of the partnership process, relevant service users and providers (including patients, carers, healthcare professionals and voluntary organisations) were invited to submit suggested research questions about the treatment of type 1 diabetes, via a national online and paper survey. The partnership followed formal protocols that defined a researchable question. This meant that many respondents' suggested research questions were rejected at the start of the process. We analysed survey submissions to find out which groups of respondents were most likely to have their suggestions rejected and what these suggestions were about. Results Five hundred eighty-three respondents submitted 1143 suggested research questions, of which 249 (21.8 %) were rejected at the first stage. Respondents with lived experience of this long-term condition (patients and carers) were more likely than those without lived experience to submit a research question that would be rejected (35.6 vs. 16.5 %; p < 0.0005). Among the rejected questions submitted by patients and carers, there were several key themes: questions about cure, cause and prevention, understanding the disease, healthcare policy and economics. Conclusions In this case study, early decisions about what constituted a researchable question restricted patients' and carers' contributions to priority setting. When discussions about a project's remit take place before service users are involved, researchers risk distorting the potential impact of involvement. Impact assessments should consider not only the differences patients and carers make to research but also the differences they could have made in the absence of systemic barriers. We recommend that initiatives aimed at involving patients and carers in identifying research questions involve them as early as possible, including in decisions about how and why suggested research questions are selected or rejected.

Twitter Demographics

The data shown below were collected from the profiles of 86 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 76 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
United Kingdom 3 4%
United States 2 3%
Unknown 71 93%

Demographic breakdown

Readers by professional status Count As %
Student > Master 15 20%
Researcher 14 18%
Student > Ph. D. Student 11 14%
Student > Doctoral Student 5 7%
Other 4 5%
Other 10 13%
Unknown 17 22%
Readers by discipline Count As %
Medicine and Dentistry 23 30%
Psychology 8 11%
Social Sciences 8 11%
Nursing and Health Professions 6 8%
Agricultural and Biological Sciences 3 4%
Other 10 13%
Unknown 18 24%

Attention Score in Context

This research output has an Altmetric Attention Score of 54. 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 08 January 2020.
All research outputs
#675,471
of 22,965,074 outputs
Outputs from Research Involvement and Engagement
#34
of 386 outputs
Outputs of similar age
#9,039
of 264,662 outputs
Outputs of similar age from Research Involvement and Engagement
#3
of 10 outputs
Altmetric has tracked 22,965,074 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 386 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 22.2. This one has done particularly well, scoring higher than 91% 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 264,662 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 10 others from the same source and published within six weeks on either side of this one. This one has scored higher than 7 of them.