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The involvement of patient organisations in rare disease research: a mixed methods study in Australia

Overview of attention for article published in Orphanet Journal of Rare Diseases, January 2016
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  • In the top 5% of all research outputs scored by Altmetric
  • High Attention Score compared to outputs of the same age (94th percentile)
  • High Attention Score compared to outputs of the same age and source (97th percentile)

Mentioned by

blogs
2 blogs
policy
1 policy source
twitter
26 X users
facebook
1 Facebook page

Citations

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38 Dimensions

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77 Mendeley
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Title
The involvement of patient organisations in rare disease research: a mixed methods study in Australia
Published in
Orphanet Journal of Rare Diseases, January 2016
DOI 10.1186/s13023-016-0382-6
Pubmed ID
Authors

Deirdre Pinto, Dominique Martin, Richard Chenhall

Abstract

We report here selected findings from a mixed-methods study investigating the role of Australian rare disease patient organisations (RDPOs) in research. Despite there being many examples of RDPOs that have initiated and supported significant scientific advances, there is little information - and none at all in Australia - about RDPOs generally, and their research-related goals, activities, and experiences. This information is a pre-requisite for understanding what RDPOs bring to research and how their involvement could be strengthened. We reviewed 112 RDPO websites, conducted an online survey completed by 61 organisational leaders, and interviewed ten leaders and two key informants. Quantitative and qualitative data were analysed using basic descriptive statistics and content analysis, respectively. Although most are small volunteer-based groups, more than 90 % of the surveyed RDPOs had a goal to promote or support research on the diseases affecting their members. Nearly all (95 %) had undertaken at least one research-related activity - such as providing funding or other support to researchers - in the previous five years. However, RDPO leaders reported considerable challenges in meeting their research goals. Difficulties most frequently identified were insufficient RDPO resources, and a perceived lack of researchers interested in studying their diseases. Other concerns included inadequate RDPO expertise in governing research "investments", and difficulty engaging researchers in the organisation's knowledge and ideas. We discuss these perceived challenges in the light of two systemic issues: the proliferation of and lack of collaboration between RDPOs, and the lack of specific governmental policies and resources supporting rare disease research and patient advocacy in Australia. This study provides unique information about the experiences of RDPOs generally, rather than experiences retrospectively reported by RDPOs associated with successful research. We describe RDPOs' valuable contributions to research, while also providing insights into the difficulties for small organisations trying to promote research. The study is relevant internationally because of what it tells us about RDPOs; however, we draw attention to specific opportunities in Australia to support RDPOs' involvement in research, for the benefit of current and future generations affected by rare diseases.

X Demographics

X Demographics

The data shown below were collected from the profiles of 26 X users who shared this research output. Click here to find out more about how the information was compiled.
Mendeley readers

Mendeley readers

The data shown below were compiled from readership statistics for 77 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Brazil 1 1%
Unknown 76 99%

Demographic breakdown

Readers by professional status Count As %
Student > Master 15 19%
Student > Ph. D. Student 14 18%
Researcher 9 12%
Student > Doctoral Student 4 5%
Student > Bachelor 3 4%
Other 12 16%
Unknown 20 26%
Readers by discipline Count As %
Medicine and Dentistry 12 16%
Nursing and Health Professions 10 13%
Biochemistry, Genetics and Molecular Biology 8 10%
Social Sciences 8 10%
Agricultural and Biological Sciences 4 5%
Other 17 22%
Unknown 18 23%
Attention Score in Context

Attention Score in Context

This research output has an Altmetric Attention Score of 33. 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 26 February 2020.
All research outputs
#1,035,178
of 22,837,982 outputs
Outputs from Orphanet Journal of Rare Diseases
#99
of 2,620 outputs
Outputs of similar age
#20,065
of 395,128 outputs
Outputs of similar age from Orphanet Journal of Rare Diseases
#2
of 75 outputs
Altmetric has tracked 22,837,982 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 95th percentile: it's in the top 5% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 2,620 research outputs from this source. They typically receive more attention than average, with a mean Attention Score of 7.5. This one has done particularly well, scoring higher than 96% 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 395,128 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 94% of its contemporaries.
We're also able to compare this research output to 75 others from the same source and published within six weeks on either side of this one. This one has done particularly well, scoring higher than 97% of its contemporaries.