↓ Skip to main content

Patient advocate perspectives on involvement in HTA: an international snapshot

Overview of attention for article published in Research Involvement and Engagement, January 2017
Altmetric Badge

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 (91st percentile)
  • Above-average Attention Score compared to outputs of the same age and source (57th percentile)

Mentioned by

twitter
36 tweeters
facebook
1 Facebook page

Citations

dimensions_citation
23 Dimensions

Readers on

mendeley
72 Mendeley
You are seeing a free-to-access but limited selection of the activity Altmetric has collected about this research output. Click here to find out more.
Title
Patient advocate perspectives on involvement in HTA: an international snapshot
Published in
Research Involvement and Engagement, January 2017
DOI 10.1186/s40900-016-0052-9
Pubmed ID
Authors

Anna Mae Scott, Janet L. Wale

Abstract

A number of health technology assessment (HTA) organisations have developed processes to engage patients in the assessment of new health technologies such as pharmaceuticals, diagnostic tests, devices or medical procedures. Typically, this involves the HTA agency providing an opportunity for patient advocates and their patient organisations (support groups for patients with a specific disease or condition) to provide submissions detailing experiences with the disease and the health technology that is being assessed. While some literature exists about how HTA agencies view the engagement of patients in the HTA process, it is not yet clear how the patient advocates and patient organisations themselves view this engagement. To answer this question, we surveyed the views of patient advocates who were members of patient organisations known to be engaged in the process of HTA or evidence-based practice. Snowballing - that is, passing on the survey invitation from individuals invited to take part in the survey to other individuals - occurred in one of the countries. The responses in this country provided a very useful comparison between the views of people who were appointed as the 'patient representatives' on an HTA committee with those who contributed input as part of the general patient organisation engagement process. Our findings identify gaps in understanding of the purpose of patient involvement and whether patient organisations felt their input made a difference, the information and support provided, and if and how feedback is given to the patient organisations. Our work can help inform further research as well as continuing improvements in HTA patient engagement processes. Background Patient involvement in health technology assessment (HTA) processes is becoming more frequent. However, it is not clear how patient advocates and their disease-based patient organisations that are involved in HTA view their involvement. We report on the results of an international survey of patient advocates and members of patient organisations about their experiences and perceptions of that involvement. Methods A 16-question survey was sent out to patient advocates and members of patient groups known to be involved in HTA processes or evidence-based practice. The survey consisted of open-ended questions focusing on respondent characteristics, stage and nature of involvement, support from HTA agencies for involvement, purpose of involvement, feedback on involvement, and whether the respondents felt that their input made a difference. Results Of 16 individuals who received the survey, 15 responded. Three, from Italy, Israel and Japan, were not involved in HTA in their country. Respondents from the following countries reported involvement in HTA processes: Canada, England, Scotland, and Wales, The Netherlands, Australia, Taiwan. The respondents indicated that HTA agencies reach out to them either actively or passively, and that their involvement is often at the appraisal stage of HTA. Typically, they reported involvement as either participants in committees or providers of submissions to HTA agencies. A wide range of approaches to supporting patient involvement by the HTA agencies was identified by respondents - including personal and telephone support, online resources, training and provision of information - but the level and type of support reported was uneven across jurisdictions. Not all respondents were clear on the purpose of their involvement in HTA, although some were able to cite specific examples of how their input made a difference; members of an HTA decision-making committee appeared to have a better understanding and were able to give examples. Feedback from HTA agencies to the patient groups on their submissions is often not provided. Conclusions Although considerable progress has been made in terms of engaging patients and patient groups in HTA, gaps remain in how involvement is supported, including facilitating involvement, clarity on roles, two-way flow of information, and methods for enhancing communication between patient organisations and HTA agencies.

Twitter Demographics

The data shown below were collected from the profiles of 36 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 72 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 72 100%

Demographic breakdown

Readers by professional status Count As %
Researcher 13 18%
Student > Ph. D. Student 11 15%
Student > Master 10 14%
Other 9 13%
Student > Bachelor 4 6%
Other 11 15%
Unknown 14 19%
Readers by discipline Count As %
Medicine and Dentistry 14 19%
Nursing and Health Professions 9 13%
Economics, Econometrics and Finance 6 8%
Pharmacology, Toxicology and Pharmaceutical Science 5 7%
Social Sciences 5 7%
Other 14 19%
Unknown 19 26%

Attention Score in Context

This research output has an Altmetric Attention Score of 22. 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 31 March 2018.
All research outputs
#1,162,809
of 18,571,001 outputs
Outputs from Research Involvement and Engagement
#118
of 284 outputs
Outputs of similar age
#34,060
of 401,141 outputs
Outputs of similar age from Research Involvement and Engagement
#10
of 21 outputs
Altmetric has tracked 18,571,001 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 93rd percentile: it's in the top 10% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 284 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 26.0. 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 401,141 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 91% of its contemporaries.
We're also able to compare this research output to 21 others from the same source and published within six weeks on either side of this one. This one has gotten more attention than average, scoring higher than 57% of its contemporaries.