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Patient involvement in guidelines is poor five years after institute of medicine standards: review of guideline methodologies

Overview of attention for article published in Research Involvement and Engagement, October 2017
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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)

Mentioned by

blogs
1 blog
twitter
60 tweeters

Citations

dimensions_citation
47 Dimensions

Readers on

mendeley
57 Mendeley
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Title
Patient involvement in guidelines is poor five years after institute of medicine standards: review of guideline methodologies
Published in
Research Involvement and Engagement, October 2017
DOI 10.1186/s40900-017-0070-2
Pubmed ID
Authors

Melissa J. Armstrong, Joshua A. Bloom

Abstract

The 2011 standards for trustworthy development of healthcare guidelines published by the United States-based Institute of Medicine recommend that guideline developers involve patients and public representatives in the development process. The standards recommend that (1) patients and the public be actively involved as members on guideline development panels and (2) guideline developers seek patient and public input during review of the draft guideline. In this study, researchers reviewed the patient and public involvement strategies of guideline developers in the United States by looking at websites and guideline development practices. Of 101 organizations reviewed, only 8% require patient and public involvement on guideline development groups; 15% sometimes require it or describe it as optional. Only 24% of guideline developers always post draft guidelines for public comment. Thirteen percent of guideline developers ask patients or patient organizations to review draft guidelines at least some of the time. Only 20% of guideline developers create patient-targeted guideline products (e.g. patient summaries of guidelines). These low numbers show that there is a substantial gap between standards for patient and public involvement in guideline development and what is actually happening. This is a missed opportunity, as patient and public contributions to guideline development include assessing guideline priorities, introducing new topics, identifying important populations and outcomes, suggesting whether findings are meaningful, prompting holistic approaches to care, assessing how recommendations interact with patient values, and writing plain-language guideline versions. Guideline developers must commit to prioritizing patient and public involvement as one part of trustworthy guideline development. The United States-based Institute of Medicine 2011 standards for trustworthy clinical practice guideline development recommended patient and public involvement in guideline development via participation by patients and public representatives on guideline development groups and via external review and public comment strategies. Guideline developer compliance with these standards has not been assessed. This study aimed to identify the frequency with which United States guideline developers are employing participation, consultation, and communication patient and public involvement strategies. Two reviewers independently extracted current patient and public involvement strategies of independent guideline developers, either (1) an organizational member of the Guidelines-International-Network North America and/or (2) having ≥2 guidelines in the National Guideline Clearinghouse between March 2011 and November 2015. Publicly available information was extracted from guideline developers' websites, methodology manuals, and guidelines between November 2015 and December 2016. Disagreements were resolved by discussion. Of 101 organizations meeting inclusion criteria, only 8% require patient/public involvement on guideline development groups; 15% sometimes require it or describe it as optional. Only 24% always utilize public comment on draft guidelines; 13% engage patients/public in external review at least some of the time. Twenty percent of developers create patient-targeted guideline products. There remains a substantial gap between patient/public involvement standards for guideline development and practice in the United States, even 5 years after publication of Institute of Medicine standards. This is a missed opportunity, as patient and public contributions to guideline development include assessing guideline priorities, introducing new topics, identifying key populations and outcomes, informing whether findings are meaningful, prompting holistic approaches to care, assessing how recommendations interact with patient values, and writing plain-language guideline versions. Guideline developers must commit to prioritizing patient and public involvement as one element of trustworthy guideline development.

Twitter Demographics

The data shown below were collected from the profiles of 60 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 57 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 57 100%

Demographic breakdown

Readers by professional status Count As %
Student > Ph. D. Student 10 18%
Researcher 8 14%
Other 7 12%
Student > Master 6 11%
Student > Bachelor 3 5%
Other 9 16%
Unknown 14 25%
Readers by discipline Count As %
Medicine and Dentistry 17 30%
Social Sciences 5 9%
Nursing and Health Professions 5 9%
Psychology 3 5%
Biochemistry, Genetics and Molecular Biology 3 5%
Other 7 12%
Unknown 17 30%

Attention Score in Context

This research output has an Altmetric Attention Score of 45. 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 19 January 2022.
All research outputs
#761,122
of 22,248,015 outputs
Outputs from Research Involvement and Engagement
#54
of 371 outputs
Outputs of similar age
#17,010
of 299,744 outputs
Outputs of similar age from Research Involvement and Engagement
#2
of 3 outputs
Altmetric has tracked 22,248,015 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 96th percentile: it's in the top 5% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 371 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 22.9. This one has done well, scoring higher than 85% 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 299,744 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 3 others from the same source and published within six weeks on either side of this one.