ArticleBMC medical research methodology2011
Response to written feedback of clinical data within a longitudinal study: a qualitative study exploring the ethical implications.
Article in BMC medical research methodology, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 1 of them a synthesis that pooled it.
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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.
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Who cites it
11 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Recommendations for the return of research results to study participants and guardians: a report from the Children's Oncology Group.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2012Guideline
- Does the feedback of blood results in observational studies influence response and consent? A randomised study of the Understanding Society Innovation Panel.BMC medical research methodology · 2023Trial
- Men's reactions to receiving objective feedback on their weight, BMI and other health risk indicators.BMC public health · 2018Trial
- Perspectives on returning individual and aggregate genomic research results to study participants and communities in Kenya: a qualitative study.BMC medical ethics · 2022Article
- Experiences of sharing results of community based serosurvey with participants in a district of Maharashtra, India.PloS one · 2022Article
- Identifying Issues and Priorities in Reporting Back Environmental Health Data.International journal of environmental research and public health · 2020Article
- Health research participants are not receiving research results: a collaborative solution is needed.Trials · 2017Article
- Oral versus written feedback delivery to nursing students in clinical education: A randomized controlled trial.Electronic physician · 2017Article
- Health research participants' preferences for receiving research results.Clinical trials (London, England) · 2016Article
- Words matter: a qualitative investigation of which weight status terms are acceptable and motivate weight loss when used by health professionals.BMC public health · 2011Article
- Qualitative study of participants' perceptions and preferences regarding research dissemination.AJOB empirical bioethicsArticle
Corrections and comments
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Authors and funding
6 authors.
Funding
Abstract
backgroundThere is a growing ethical imperative to feedback research results to participants but there remains a striking lack of empirical research on how people respond to individualised feedback. We sought to explore longitudinal study participants' response to receiving individual written feedback of weight-related and blood results, and to consider the balance of harms against benefits.
methodsA qualitative study with face-to-face and telephone interviews conducted with 50 men and women who had participated in the fifth and most recent wave of the cohort study 'West of Scotland Twenty-07' and received a feedback letter containing body mass index (BMI), body fat percentage, cholesterol and glycated haemoglobin A1c (HbA1c) results.
resultsExpectations of, and response to, the feedback of their individual results varied. Whilst half of the participants were on the whole 'pleased' with their results or held neutral views, half reported negative responses such as 'shock' or 'concern', particularly in relation to the weight-related results. Participants who were overweight and obese used the most negative language about their results, with some being quite distressed and reporting feelings of powerlessness, low self-image and anxiety over future health. Nevertheless, some people reported having implemented lifestyle changes in direct response to the feedback, resulting in significant weight-loss and/or dietary improvements. Others reported being motivated to change their behaviour. Age and gender differences were apparent in these narratives of behaviour change.
conclusionsThe potential harm caused to some participants may be balanced against the benefit to others. More evaluation of the impact of the format, content and means of individualised feedback of research findings in non-trial studies is required given the growing ethical imperative to offer participants a choice of receiving their results, and the likelihood that a high percentage will choose to receive them.
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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.