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Patients’, clinicians’ and the research communities’ priorities for treatment research: there is an important mismatch

Overview of attention for article published in Research Involvement and Engagement, June 2015
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  • In the top 5% of all research outputs scored by Altmetric
  • One of the highest-scoring outputs from this source (#1 of 219)
  • High Attention Score compared to outputs of the same age (99th percentile)

Mentioned by

news
3 news outlets
blogs
2 blogs
twitter
244 tweeters
facebook
10 Facebook pages
googleplus
4 Google+ users

Citations

dimensions_citation
118 Dimensions

Readers on

mendeley
119 Mendeley
citeulike
1 CiteULike
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Title
Patients’, clinicians’ and the research communities’ priorities for treatment research: there is an important mismatch
Published in
Research Involvement and Engagement, June 2015
DOI 10.1186/s40900-015-0003-x
Pubmed ID
Authors

Sally Crowe, Mark Fenton, Matthew Hall, Katherine Cowan, Iain Chalmers

Abstract

There is some evidence that there is a mismatch between what patients and health professionals want to see researched and the research that is actually done. The James Lind Alliance (JLA) research Priority Setting Partnerships (PSPs) were created to address this mismatch. Between 2007 and 2014, JLA partnerships of patients, carers and health professionals agreed on important treatment research questions (priorities) in a range of health conditions, such as Type 1 diabetes, eczema and stroke. We were interested in how much these JLA PSP priorities were similar to treatments undergoing evaluation and research over the same time span. We identified the treatments described in all the JLA PSP research priority lists and compared these to the treatments described in a group of research studies (randomly selected) registered publically. The priorities identified by JLA PSPs emphasised the importance of non-drug treatment research, compared to the research actually being done over the same time period, which mostly involved evaluations of drugs. These findings suggest that the research community should make greater efforts to address issues of importance to users of research, such as patients and healthcare professionals. Background Comparisons of treatment research priorities identified by patients and clinicians with research actually being done by researchers are very rare. One of the best known of these comparisons (Tallon et al. Relation between agendas of the research community and the research consumer 355:2037-40, 2000) revealed important mismatches in priorities in the assessment of treatments for osteoarthritis of the knee: researchers preferenced drug trials, patients and clinicians prioritised non-drug treatments. These findings were an important stimulus in creating the James Lind Alliance (JLA). The JLA supports research Priority Setting Partnerships (PSPs) of patients, carers and clinicians, who are actively involved in all aspects of the process, to develop shared treatment research priorities. We have compared the types of treatments (interventions) prioritised for evaluation by JLA PSPs with those being studied in samples of clinical trials being done over the same period. Objective We used treatment research priorities generated by JLA PSPs to assess whether, on average, treatments prioritised by patients and clinicians differ importantly from those being studied by researchers. Methods We identified treatments mentioned in prioritised research questions generated by the first 14 JLA PSPs. We compared these treatments with those assessed in random samples of commercial and non-commercial clinical trials recruiting in the UK over the same period, which we identified using WHO's International Clinical Trials Registry Platform. Results We found marked differences between the proportions of different types of treatments proposed by patients, carers and clinicians and those currently being evaluated by researchers. In JLA PSPs, drugs accounted for only 18 % (23/126) of the treatments mentioned in priorities; in registered non-commercial trials, drugs accounted for 37 % (397/1069) of the treatments mentioned; and in registered commercial trials, drugs accounted for 86 % (689/798) of the treatments mentioned. Discussion Our findings confirm the mismatch first described by Tallon et al. 15 years ago. On average, drug trials are being preferenced by researchers, and non-drug treatments are preferred by patients, carers and clinicians. This general finding should be reflected in more specific assessments of the extent to which research is addressing priorities identified by the patient and clinician end users of research. It also suggests that the research culture is slow to change in regard to how important and relevant treatment research questions are identified and prioritised.

Twitter Demographics

The data shown below were collected from the profiles of 244 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 119 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
United Kingdom 3 3%
United States 2 2%
Spain 1 <1%
Canada 1 <1%
Unknown 112 94%

Demographic breakdown

Readers by professional status Count As %
Student > Master 23 19%
Researcher 20 17%
Student > Ph. D. Student 17 14%
Other 11 9%
Student > Bachelor 11 9%
Other 26 22%
Unknown 11 9%
Readers by discipline Count As %
Medicine and Dentistry 49 41%
Social Sciences 16 13%
Nursing and Health Professions 15 13%
Psychology 6 5%
Agricultural and Biological Sciences 3 3%
Other 11 9%
Unknown 19 16%

Attention Score in Context

This research output has an Altmetric Attention Score of 190. 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 12 October 2019.
All research outputs
#98,189
of 15,916,024 outputs
Outputs from Research Involvement and Engagement
#1
of 219 outputs
Outputs of similar age
#1,528
of 232,917 outputs
Outputs of similar age from Research Involvement and Engagement
#1
of 2 outputs
Altmetric has tracked 15,916,024 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 99th percentile: it's in the top 5% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 219 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 26.5. This one has done particularly well, scoring higher than 99% 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 232,917 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 99% of its contemporaries.
We're also able to compare this research output to 2 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