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The need for patient-centred clinical research in idiopathic pulmonary fibrosis

Overview of attention for article published in BMC Medicine, September 2015
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About this Attention Score

  • In the top 25% of all research outputs scored by Altmetric
  • High Attention Score compared to outputs of the same age (88th percentile)

Mentioned by

blogs
1 blog
twitter
10 tweeters

Citations

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32 Dimensions

Readers on

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71 Mendeley
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Title
The need for patient-centred clinical research in idiopathic pulmonary fibrosis
Published in
BMC Medicine, September 2015
DOI 10.1186/s12916-015-0475-4
Pubmed ID
Authors

Anne-Marie Russell, Mirjam AG Sprangers, Steven Wibberley, Noel Snell, Daniel M. Rose, Jeff J. Swigris

Abstract

Patient-centredness is an accepted term and is perceived by healthcare professionals to be morally and ethically desirable. We are motivated by the belief that this approach will improve the patient-professional experience of the decision-making process and improve health outcomes. We acknowledge that patients, either as participants or as co-investigators, have positive contributions to make to research. As the idiopathic pulmonary fibrosis (IPF) community enters a new era of clinical research activity we consider that there is greater capacity for patient involvement and partnership.Patient involvement in research can be optimised through collaborations in the research design, study conduct, and dissemination. There is increasing interest in using patient- reported outcomes (PROs), such as health-related quality of life, and symptoms measures to inform decision-making and ensure patient perspectives are taken into account. PROs are an essential component of specialist IPF services, to monitor and improve care delivery and to measure and benchmark performance. In clinical trials, PROs can additionally be used to define entry criteria, evaluate efficacy of an intervention, and evaluate adverse events. We suggest that there is a much wider scope for including patient-centred PROs in clinical research and for creative thought in developing patient co-investigator roles.Participation in research activity requires highly refined decision-making processes, particularly in a condition such as IPF, which has an often unpredictable trajectory. The IPF research landscape has changed and the design and conduct of clinical trials in IPF requires some radical rethinking. It is accepted that involving patients in the role of co-investigators will impact the research questions we ask and result in study designs that are patient-centred. IPF clinical trials have been hindered by the lack of availability of validated, disease-specific questionnaires. A conservative approach appears to have been taken to the inclusion of generic symptom or quality of life measures as PRO endpoints. Thus, the impact of new drugs on the quality of life of research participants demonstrates only minimal benefit. It is time to refocus on a patient-centred approach with regards to the co-investigator role, PRO development, and research participants.

Twitter Demographics

The data shown below were collected from the profiles of 10 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 71 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
United States 2 3%
Denmark 1 1%
Unknown 68 96%

Demographic breakdown

Readers by professional status Count As %
Student > Master 11 15%
Student > Ph. D. Student 10 14%
Researcher 9 13%
Other 7 10%
Student > Bachelor 5 7%
Other 13 18%
Unknown 16 23%
Readers by discipline Count As %
Medicine and Dentistry 22 31%
Nursing and Health Professions 9 13%
Agricultural and Biological Sciences 4 6%
Social Sciences 4 6%
Biochemistry, Genetics and Molecular Biology 2 3%
Other 9 13%
Unknown 21 30%

Attention Score in Context

This research output has an Altmetric Attention Score of 15. 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 24 October 2019.
All research outputs
#1,773,054
of 19,911,470 outputs
Outputs from BMC Medicine
#1,229
of 2,931 outputs
Outputs of similar age
#28,858
of 260,726 outputs
Outputs of similar age from BMC Medicine
#1
of 1 outputs
Altmetric has tracked 19,911,470 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 91st percentile: it's in the top 10% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 2,931 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 39.5. This one has gotten more attention than average, scoring higher than 58% 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 260,726 tracked outputs that were published within six weeks on either side of this one in any source. This one has done well, scoring higher than 88% of its contemporaries.
We're also able to compare this research output to 1 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