Does the feedback of blood results in observational studies influence response and consent? A randomised study of the Understanding Society Innovation Panel
- PMID: 37280544
- PMCID: PMC10244078
- DOI: 10.1186/s12874-023-01948-y
Does the feedback of blood results in observational studies influence response and consent? A randomised study of the Understanding Society Innovation Panel
Abstract
Background: While medical studies generally provide health feedback to participants, in observational studies this is not always the case due to logistical and financial difficulties, or concerns about changing observed behaviours. However, evidence suggests that lack of feedback may deter participants from providing biological samples. This paper investigates the effect of offering feedback of blood results on participation in biomeasure sample collection.
Methods: Participants aged 16 and over from a longitudinal study - the Understanding Society Innovation Panel-were randomised to three arms - nurse interviewer, interviewer, web survey - and invited to participate in biomeasures data collection. Within each arm they were randomised to receive feedback of their blood results or not. For those interviewed by a nurse both venous and dried blood samples (DBS) were taken in the interview. For the other two arms, they were asked if they would be willing to take a sample, and if they agreed a DBS kit was left or sent to them so the participant could take their own sample and return it. Blood samples were analysed and, if in the feedback arms, participants were sent their total cholesterol and HbA1c results. Response rates for feedback and non-feedback groups were compared: overall; in each arm of the study; by socio-demographic and health characteristics; and by previous study participation. Logistic regression models of providing a blood sample by feedback group and data collection approach controlling for confounders were calculated.
Results: Overall 2162 (80.3% of individuals in responding households) took part in the survey; of those 1053 (48.7%) consented to provide a blood sample. Being offered feedback had little effect on overall participation but did increase consent to provide a blood sample (unadjusted OR 1.38; CI: 1.16-1.64). Controlling for participant characteristics, the effect of feedback was highest among web participants (1.55; 1.11-2.17), followed by interview participants (1.35; 0.99 -1.84) and then nurse interview participants (1.30; 0.89-1.92).
Conclusions: Offering feedback of blood results increased willingness to give samples, especially for those taking part in a web survey.
Keywords: Demography; Feedback; Longitudinal study; Mode; Response rates; Socioeconomic factors.
© 2023. The Author(s).
Conflict of interest statement
The authors declare no competing interests.
Similar articles
-
A randomised study of nurse collected venous blood and self-collected dried blood spots for the assessment of cardiovascular risk factors in the Understanding Society Innovation Panel.Sci Rep. 2023 Aug 10;13(1):13008. doi: 10.1038/s41598-023-39674-6. Sci Rep. 2023. PMID: 37563249 Free PMC article. Clinical Trial.
-
Effectiveness and cost-effectiveness of four different strategies for SARS-CoV-2 surveillance in the general population (CoV-Surv Study): a structured summary of a study protocol for a cluster-randomised, two-factorial controlled trial.Trials. 2021 Jan 8;22(1):39. doi: 10.1186/s13063-020-04982-z. Trials. 2021. PMID: 33419461 Free PMC article.
-
Safety and Efficacy of Imatinib for Hospitalized Adults with COVID-19: A structured summary of a study protocol for a randomised controlled trial.Trials. 2020 Oct 28;21(1):897. doi: 10.1186/s13063-020-04819-9. Trials. 2020. PMID: 33115543 Free PMC article.
-
Demographic and AIDS-related characteristics of consenters to a population-based HIV-survey: results from a pilot study in Arusha, Tanzania.East Afr Med J. 1994 Aug;71(8):483-9. East Afr Med J. 1994. PMID: 7867536
-
Improving the referral process for familial breast cancer genetic counselling: findings of three randomised controlled trials of two interventions.Health Technol Assess. 2005 Feb;9(3):iii-iv, 1-126. doi: 10.3310/hta9030. Health Technol Assess. 2005. PMID: 15694064 Review.
References
-
- MRC and Wellcome Trust. Framework on the feedback of health-related findings in research, MRC March 2014 https://mrc.ukri.org/documents/pdf/mrc-wellcome-trust-framework-on-the-f... Accessed 4 Oct 2021.
-
- National Academies of Sciences, Engineering, and Medicine. Returning Individual Research Results to Participants: Guidance for a New Research Paradigm. 2018. Washington, DC: The National Academies Press. 10.17226/25094. Accessed from http://nap.edu/2509 10/4/2021. - PubMed
-
- Merz S, Jaehn P, Pischon T, Fischere B, Wirkner K, Rach S, Guenther K, Obi N, Holmberg C. on behalf of the AdvanceGender Study Group Investigating people’s attitudes towards participating in longitudinal health research: an intersectionality-informed perspective. Int J Equity Health. 2023;22:23. doi: 10.1186/s12939-022-01807-0. - DOI - PMC - PubMed
Publication types
MeSH terms
LinkOut - more resources
Full Text Sources
