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Clinical trials from the patient perspective: survey in an online patient community

Overview of attention for article published in BMC Health Services Research, February 2017
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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 (86th percentile)

Mentioned by

news
1 news outlet
twitter
6 tweeters

Citations

dimensions_citation
14 Dimensions

Readers on

mendeley
66 Mendeley
Title
Clinical trials from the patient perspective: survey in an online patient community
Published in
BMC Health Services Research, February 2017
DOI 10.1186/s12913-017-2090-x
Pubmed ID
Authors

Pronabesh DasMahapatra, Priya Raja, Jeremy Gilbert, Paul Wicks

Abstract

Developing new medicines relies on the successful conduct of clinical trials. As trial protocols become more arduous, it becomes harder to recruit and retain patient volunteers, although recent efforts such as OMERACT and I-SPY2 show that partnering with patients can be beneficial. We sought to describe drivers and barriers to trial participation, as well as condition-specific trial preferences. An online survey was fielded via the patient-powered research network PatientsLikeMe to 1,621 members living with nine selected chronic health conditions. Questions included demographics, trial experience, reasons for non-participation, questions relating to aspects of trial design, and an adaptation of the Net Promoter Score (NPS) for trial satisfaction. Mean age of respondents was 55 years; most patients were white (93%), female (67%), and living in the United States (72%). Primary conditions were MS (21%), Parkinson's (20%), fibromyalgia (15%), ALS (10%), type 2 diabetes (10%), rheumatoid arthritis (RA, 8%), epilepsy (8%), major depressive disorder (MDD, 5%) and systemic lupus erythematosus (SLE, 3%). Most patients had not discussed a trial with their physician and only 21% had ever enrolled, with rates highest in ALS (36%), Parkinson's disease (36%) and MS (20%) and lowest among SLE (9%), MDD (11%) and Fibromyalgia (11%). Common reasons for non-participation were eligibility criteria, inconvenience of travel and concerns about side effects. NPS suggested that many patients were unsatisfied; patients with lupus, epilepsy, RA, and fibromyalgia reported negative scores, i.e. they would dissuade other patients like them from taking part in trials. The most important considerations in trial participation were the opportunity to improve one's own health and that of others, the reputation of the institution, and having medical bills covered in case of injury. Least important were remuneration and possibility of receiving a placebo. ALS patients were more willing to tolerate undesirable aspects of trials. Most patients are willing to enroll yet very few are invited. When they do, trial participation is often burdensome, but patients are willing to help improve their design. Researchers should let patients help design better trials to overcome recruitment and retention issues and hasten the development of new medicines.

Twitter Demographics

The data shown below were collected from the profiles of 6 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 66 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 66 100%

Demographic breakdown

Readers by professional status Count As %
Researcher 16 24%
Unspecified 11 17%
Student > Master 11 17%
Student > Ph. D. Student 7 11%
Student > Doctoral Student 5 8%
Other 16 24%
Readers by discipline Count As %
Medicine and Dentistry 21 32%
Unspecified 16 24%
Nursing and Health Professions 7 11%
Neuroscience 5 8%
Business, Management and Accounting 5 8%
Other 12 18%

Attention Score in Context

This research output has an Altmetric Attention Score of 14. 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 27 March 2018.
All research outputs
#1,003,492
of 12,713,955 outputs
Outputs from BMC Health Services Research
#419
of 4,212 outputs
Outputs of similar age
#34,563
of 251,952 outputs
Outputs of similar age from BMC Health Services Research
#1
of 1 outputs
Altmetric has tracked 12,713,955 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 92nd percentile: it's in the top 10% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 4,212 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 6.4. This one has done particularly well, scoring higher than 90% 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 251,952 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 86% 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