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Patient and public involvement in data collection for health services research: a descriptive study

Overview of attention for article published in Research Involvement and Engagement, August 2015
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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 (87th percentile)

Mentioned by

twitter
18 tweeters
facebook
1 Facebook page

Citations

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11 Dimensions

Readers on

mendeley
31 Mendeley
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Title
Patient and public involvement in data collection for health services research: a descriptive study
Published in
Research Involvement and Engagement, August 2015
DOI 10.1186/s40900-015-0006-7
Pubmed ID
Authors

Sara Garfield, Seetal Jheeta, Ann Jacklin, Anna Bischler, Christine Norton, Bryony D Franklin, Garfield, S, Bryony D. Franklin

Abstract

There is a consensus that patients and the public should be involved in research in a meaningful way. To date, lay people have been mostly involved in developing research ideas and commenting on patient information but not as much in actual data collection. We have had firsthand experience with lay people helping to conduct a study on how patients in hospital are involved with their medicines. In the first part of this study, we observed doctors' ward rounds, pharmacists' ward visits and nurses' drug administration rounds, to find out if and how healthcare professionals interacted with patients about their medicines. Lay people conducted some of these observations. We wanted to explore the benefits and challenges of having lay people conduct these observations, to tell us more about how lay people can be involved in conducting such research. We interviewed the lay members and researchers involved in this research to find out their views. We also looked at the observation notes to identify what the lay people had noticed that the researchers had not. The lay members and researchers reported that lay members added value to the study by bringing new perspectives. Lay people had noticed some different things to the researchers. We experienced some challenges which need to be addressed. These weregetting the lay observers registered with the hospitals to allow them to be on the wards in this capacitylay observers and researchers having different understanding of research procedures such as patient consenttrying to find lay observers of different backgrounds and ethnic groups. Background: It is recognised that involving lay people with research in a meaningful rather than tokenistic way is both important and challenging. In a recent health services research study addressing inpatient involvement in medication safety, we sought to overcome this challenge by including lay people in collecting observational data in the hospital setting. The aim of this study was to evaluate lay and researcher perspectives on lay involvement in data collection in order to inform and enhance the future role of lay people in carrying out health services research. Methods: We conducted semi-structured interviews with the lay members who collected observational data in our wider study and the researchers who provided support and/or were involved in their recruitment and training. The interviews were transcribed verbatim and coded using open thematic analysis. In addition, we conducted secondary analysis of the observational data to identify the specific contributions of lay observers. Results: We interviewed the three lay members and the four researchers involved. Both these interviews and the secondary data analysis demonstrated that the lay members added value to the study by bringing additional general perspectives on communication with hospital inpatients. Combined with researchers' perspectives on interactions more specifically related to medication, this provided a broader answer to our research question of how healthcare professionals facilitate inpatient understanding of their medication and involvement in medication safety. This contrasted to the involvement lay observers reported having in previous research where their role had been more consultative. The lay members all reported that carrying out the observations had been an interesting and informative experience. Some challenges arose including the infrastructure not having been in place to support this specialist lay research role, differing paradigms of research governance held by the public and researchers in relation to consent procedures and difficulties in recruiting a diverse range of members of the public to carry out the role. Conclusions: Lay members can add value to research by being involved in data collection within health services research. There is a need to build infrastructure to better support this involvement.

Twitter Demographics

The data shown below were collected from the profiles of 18 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 31 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
United Kingdom 1 3%
United States 1 3%
Unknown 29 94%

Demographic breakdown

Readers by professional status Count As %
Student > Master 6 19%
Researcher 5 16%
Student > Ph. D. Student 5 16%
Other 2 6%
Student > Doctoral Student 2 6%
Other 3 10%
Unknown 8 26%
Readers by discipline Count As %
Medicine and Dentistry 7 23%
Nursing and Health Professions 6 19%
Social Sciences 4 13%
Computer Science 1 3%
Psychology 1 3%
Other 2 6%
Unknown 10 32%

Attention Score in Context

This research output has an Altmetric Attention Score of 12. 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 01 June 2017.
All research outputs
#1,462,465
of 14,335,800 outputs
Outputs from Research Involvement and Engagement
#117
of 168 outputs
Outputs of similar age
#29,439
of 235,708 outputs
Outputs of similar age from Research Involvement and Engagement
#2
of 2 outputs
Altmetric has tracked 14,335,800 research outputs across all sources so far. Compared to these this one has done well and is in the 89th percentile: it's in the top 25% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 168 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 28.5. This one is in the 30th percentile – i.e., 30% of its peers scored the same or lower than it.
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 235,708 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 87% of its contemporaries.
We're also able to compare this research output to 2 others from the same source and published within six weeks on either side of this one.