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Engaging the Canadian public on reimbursement decision-making for drugs for rare diseases: a national online survey

Overview of attention for article published in BMC Health Services Research, May 2017
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  • In the top 25% of all research outputs scored by Altmetric
  • High Attention Score compared to outputs of the same age (81st percentile)
  • Good Attention Score compared to outputs of the same age and source (75th percentile)

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Title
Engaging the Canadian public on reimbursement decision-making for drugs for rare diseases: a national online survey
Published in
BMC Health Services Research, May 2017
DOI 10.1186/s12913-017-2310-4
Pubmed ID
Authors

Julie Polisena, Michael Burgess, Craig Mitton, Larry D. Lynd

Abstract

Funding of drugs for rare diseases (DRDs) requires decisions that balance fairness for all individuals within the healthcare system with compassion for affected individuals. Our study objective was to conduct a national online survey to determine the Canadian public's perspective, including regional variations, associated with DRD decision-making. The survey collected responses from 1631 Canadians. Respondents were asked to rank at least three and up to five DRD decision-making priorities, out of a total of eight priorities presented. They were also asked to compare and rate their agreement level on a 5-point Likert scale with four funding scenarios described. The frequency of each priority, independent of where it was ranked in relation to the other priorities, was calculated. Regression analyses were conducted to measure the association between respondents' demographics and selected priorities with their agreement level for each funding scenario. Among the survey respondents, Improved Quality of Life and Effective Health Care were most frequently selected as top priorities. Also, 79.2% of respondents agreed with equal access to DRDs across Canada, and 73.0% agreed with DRD funding if additional expenses are justified in the DRD's cost-effectiveness. Approximately half agreed to pay for DRDs independent of their effectiveness. There were no geographic differences in priorities. Selecting Effective Health Care in the top priorities was positively associated with both prioritizing other programs over programs for rare diseases and DRD funding only if deemed as cost-effective. Respondents, who selected National Access as one of the top priorities, were less likely to agree to fund DRDs only if deemed as cost-effective and were more likely to agree with the scenario to provide national access to DRDs. The survey results suggest the level of public support for funding decisions and programs that incorporate assessment of the effectiveness of drugs for improving quality of life, and to promote similar access across Canada. The responses anticipate public responses to different policy scenarios and the priorities that underlie them. Decision-makers may find it useful to consider whether and how to incorporate these results into policy decisions and their justification to citizens and patients.

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Mendeley readers

Mendeley readers

The data shown below were compiled from readership statistics for 70 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 70 100%

Demographic breakdown

Readers by professional status Count As %
Researcher 11 16%
Student > Ph. D. Student 9 13%
Student > Master 6 9%
Other 6 9%
Student > Bachelor 5 7%
Other 7 10%
Unknown 26 37%
Readers by discipline Count As %
Medicine and Dentistry 13 19%
Economics, Econometrics and Finance 6 9%
Social Sciences 6 9%
Nursing and Health Professions 4 6%
Psychology 4 6%
Other 7 10%
Unknown 30 43%
Attention Score in Context

Attention Score in Context

This research output has an Altmetric Attention Score of 10. 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 July 2017.
All research outputs
#3,115,269
of 22,977,819 outputs
Outputs from BMC Health Services Research
#1,408
of 7,692 outputs
Outputs of similar age
#59,060
of 313,455 outputs
Outputs of similar age from BMC Health Services Research
#34
of 137 outputs
Altmetric has tracked 22,977,819 research outputs across all sources so far. Compared to these this one has done well and is in the 86th percentile: it's in the top 25% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 7,692 research outputs from this source. They typically receive more attention than average, with a mean Attention Score of 7.8. This one has done well, scoring higher than 81% 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 313,455 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 81% of its contemporaries.
We're also able to compare this research output to 137 others from the same source and published within six weeks on either side of this one. This one has done well, scoring higher than 75% of its contemporaries.