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The ‘experimental public’ in longitudinal health research: views of local leaders and service providers in rural South Africa

Overview of attention for article published in Global Health Research and Policy, September 2017
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Title
The ‘experimental public’ in longitudinal health research: views of local leaders and service providers in rural South Africa
Published in
Global Health Research and Policy, September 2017
DOI 10.1186/s41256-017-0046-7
Pubmed ID
Authors

Rhian Twine, Gillian Lewando Hundt, Kathleen Kahn

Abstract

The concept of 'experimental public' has been recently applied to publics involved in clinical trials. This term could also be applied to publics involved in longitudinal research such as health and demographic surveillance systems. The ethics of practice and public engagement with these experimental publics are of key importance and include issues of informed consent, confidentiality, collection of body tissue samples and fair local benefit. Individual (n = 11) and focus group (n = 5) qualitative semi-structured interviews were conducted with 56 local leaders and service providers regarding their views about research activities in a longitudinal health research study site run by the MRC/Wits Rural Public Health and Health Transitions Research Unit (Agincourt) in rural South Africa. Deductive and inductive thematic analysis was undertaken using NVivo software to identify the emergent themes. There was an understanding of the usefulness of collecting demographic data, but reasons for gathering other contextual data such as on food security, as well as the reasons for collection of blood was less clear. While appreciation was expressed for feedback of individual results such as blood pressure levels during home-based data collection, there were requests for more results from biomarkers, and for these to be given at home, rather than at the clinic. There were reports of indirect refusals, and offers by leaders to assist in reducing refusal rates. There were concerns about confidentiality, especially in the publication of results. Some leaders would have liked to receive more individual level data for planning of services, although they understood this would breach confidentiality. Service providers were concerned about the withdrawal of some services post intervention trials. This experimental public has, over time, developed a nuanced understanding of the reasons for research and the procedures undertaken. Discussions concerning fair benefit ranged from requests for more individual clinically-relevant results for participants, to understanding how research results could assist in planning of public health services at local and national levels. The concerns illustrate the complexity of the ethics of practice which has implications for policy, practice and governance for those working in longitudinal health research sites globally.

Twitter Demographics

The data shown below were collected from the profile of 1 tweeter 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 15 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 15 100%

Demographic breakdown

Readers by professional status Count As %
Student > Master 6 40%
Student > Ph. D. Student 4 27%
Researcher 2 13%
Unspecified 2 13%
Student > Doctoral Student 1 7%
Other 0 0%
Readers by discipline Count As %
Medicine and Dentistry 5 33%
Nursing and Health Professions 3 20%
Unspecified 2 13%
Agricultural and Biological Sciences 1 7%
Psychology 1 7%
Other 3 20%

Attention Score in Context

This research output has an Altmetric Attention Score of 1. 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 07 September 2017.
All research outputs
#7,303,829
of 11,727,438 outputs
Outputs from Global Health Research and Policy
#42
of 54 outputs
Outputs of similar age
#150,430
of 263,887 outputs
Outputs of similar age from Global Health Research and Policy
#5
of 7 outputs
Altmetric has tracked 11,727,438 research outputs across all sources so far. This one is in the 23rd percentile – i.e., 23% of other outputs scored the same or lower than it.
So far Altmetric has tracked 54 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 5.7. This one is in the 12th percentile – i.e., 12% 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 263,887 tracked outputs that were published within six weeks on either side of this one in any source. This one is in the 33rd percentile – i.e., 33% of its contemporaries scored the same or lower than it.
We're also able to compare this research output to 7 others from the same source and published within six weeks on either side of this one. This one has scored higher than 2 of them.