ArticleGlobal health research and policy2017
The 'experimental public' in longitudinal health research: views of local leaders and service providers in rural South Africa.
Article in Global health research and policy, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
4 citing papers in PubMed, 17 citations in OpenAlex.
- Towards an appropriate ethics framework for Health and Demographic Surveillance Systems (HDSS): learning from issues faced in diverse HDSS in sub-Saharan Africa.BMJ global health · 2021Article
- Gut microbiome profiling of a rural and urban South African cohort reveals biomarkers of a population in lifestyle transition.BMC microbiology · 2020Article
- Rural South African Community Perceptions of Antibiotic Access and Use: Qualitative Evidence from a Health and Demographic Surveillance System Site.The American journal of tropical medicine and hygiene · 2019Article
- Dilemmas of Ethics in Practice in Longitudinal Health Research: Identifying Opportunities for Widening Participation of Residents.Frontiers in sociology · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors at 1 institution in 4 countries.
Funding
Abstract
backgroundThe 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.
methodsIndividual (
resultsThere 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.
conclusionsThis 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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.