Active recruitment and limited participant-load related to high participation in large population-based biobank studies

Zon, Sander K R van; Scholtens, Salome; Reijneveld, Sijmen A.; Smidt, Nynke; Bültmann, Ute

doi:10.1016/j.jclinepi.2016.03.009

Cited by 15 publications

(17 citation statements)

References 67 publications

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“…Other studies have uncovered potential barriers (e.g., privacy, confidentiality) to biobank participation [ 22 , 23 ], clarified patient preferences for different models of consent [ 24 – 28 ], and examined the impact of “non-welfare interests” on decisions to donate biological materials [ 29 ]. van Zon et al [ 30 ] identified 25 studies focused on methods or strategies for improving biobank participation. While all of these considerations are important and represent a shift in focus from more abstract concerns about the curation of biospecimens to studies examining the actual experience and preferences of the biospecimen donors, few studies have examined the stability of donor preferences regarding sample use years after their decision to enroll in a DNA biobank.…”

Section: Discussionmentioning

confidence: 99%

Assessing the stability of biobank donor preferences regarding sample use: evidence supporting the value of dynamic consent

et al. 2020

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Dynamic consent has been proposed as a strategy for addressing the limitations of traditional, broad consent for biobank participation. Although the argument for dynamic consent has been made on theoretical grounds, empirical studies evaluating the potential utility of dynamic consent are needed to enhance deliberations about the merits of dynamic consent. Few studies have assessed such considerations as whether donor preferences may change over time or if participants would use a dynamic consent mechanism to modify preferences when they change. We administered a 66-item survey to participants in a large DNA biobank. The survey sought to gauge the stability of donor preferences specified at the time of biobank enrollment, specifically the stability of donors’ preference regarding posthumous availability of biospecimens to next-of-kin. We received 1164 completed surveys for a response rate of 72%. Forty percent of respondents indicated a preference regarding sample availability on the survey (T2) that was inconsistent with the preference they had expressed when they enrolled in the biobank (T1). Most (94%) individuals with inconsistent preferences regarding sample availability had initially restricted sample availability at T1 but were comfortable with broader availability when asked at the time of the survey (T2). Our findings demonstrate that preferences regarding sample use expressed at the time of enrollment in a DNA biobank may not be reliable indicators of donor preferences over time. These findings lend empirical support to the case for a dynamic consent model in which biobank participants are approached over time to clarify their views regarding sample use.

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Section: Discussionmentioning

confidence: 99%

Assessing the stability of biobank donor preferences regarding sample use: evidence supporting the value of dynamic consent

et al. 2020

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“…Our analysis does not fully support these findings, however, as the actual consent rates were lower than expected. Van Zon et al (2016) also mention lower actual participation rates in many biobank studies, arguing that people might be more prone to give a socially desirable answer to a hypothetical study costing the hypothetical participants no time or effort. We agree with Van Zon et al’s assessment that hypothetical situations do not reflect real situations where people have to make concrete and possibly long-lasting decisions based on inadequate knowledge.…”

Section: Concern Over Consent Rates – Creating Another Use For the Wimentioning

confidence: 99%

Questioning the rhetoric of a ‘willing population’ in Finnish biobanking

Snell

Tarkkala

2019

Life Sci Soc Policy

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According to surveys and opinion polls, citizens in Nordic welfare societies have positive, supportive attitudes towards medical research and biobanking. In Finland, it was expected that this would result in the active biobank participation of patients and citizens. Indeed, public support has been rhetorically utilised as a unique societal factor and advantage in the promotion of Finnish biobanks, underlining the potential Finland offers for the international biomedical enterprise. In this paper, we critically analyse the use of notions such as ‘willing population’ and ‘engaged people’ in the promotion and legitimation of biobanking. First, there is a seeming contradiction between positive attitudes and actual participation rates, as biobanks have faced unexpected challenges in participant recruitment during the first years of their operations. As a result, the concept of a willing population was redirected to problematise the necessity of informed consent. Second, we question whether it is even meaningful to assume the existence of an informed and engaged population with regard to biobanking. Therefore, we suggest that it is problematic to talk about a willing population at the same time as the relevance of the informed consent system is being questioned by biobank actors and policy makers. We analyse this tension in relation to existing data on Finnish people’s attitudes, pointing out that positive, supportive views do not directly transform into high participation rates; nor do they justify the claims of policy makers and biobank proponents that people are willing to participate, when in fact surveys report that people know very little about biobanks.

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“…A different recruitment procedure could increase study participation. A recent systematic review found that personal approaches lead to higher participation rates [ 51 ]. Recruitment can be increased through personal invitations by the researchers, invitation at the time of the third SA episode, when an employee has increased awareness possibly leading to increased motivation, or more involvement from the employer [ 52 ] or employee representatives.…”

Section: Discussionmentioning

confidence: 99%

“…To increase adherence to an OP consultation, it might be more effective to offer only blended care, with the OP consultation as the main intervention and the EHI in the supporting role, as preparation for the consultation. Personal invitations to the OP could also increase adherence [ 51 ]. Preferably, the invitation is to the OP of the organization the employee works for; alternatively, a visit to another OP might be offered.…”

Section: Discussionmentioning

confidence: 99%

Effect of an eHealth Intervention to Reduce Sickness Absence Frequency Among Employees With Frequent Sickness Absence: Randomized Controlled Trial

Notenbomer¹,

Roelen²,

Groothoff³

et al. 2018

J Med Internet Res

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BackgroundFrequent sickness absence—that is, 3 or more episodes of sickness absence in 1 year—is a problem for employers and employees. Many employees who have had frequent sickness absence in a prior year also have frequent sickness absence in subsequent years: 39% in the first follow-up year and 61% within 4 years. Moreover, 19% have long-term sickness absence (≥6 weeks) in the first follow-up year and 50% within 4 years. We developed an electronic health (eHealth) intervention, consisting of fully automated feedback and advice, to use either as a stand-alone tool (eHealth intervention–only) or combined with consultation with an occupational physician (eHealth intervention–occupational physician).ObjectiveThis study aimed to evaluate the effect of the eHealth intervention, with or without additional occupational physician consultation, to reduce sickness absence frequency for employees with frequent sickness absence, versus care as usual (CAU).MethodsThis study was a three-armed randomized controlled trial. Employees with frequent sickness absence received invitational letters, which were distributed by their employers. The primary outcome measure was the number of register-based sickness absence episodes 12 months after completing the baseline questionnaire. Secondary outcome measures were register-based total sickness absence days and self-assessed burnout, engagement, and work ability. In a process evaluation 3 months after baseline, we examined adherence to the intervention and additional actions such as general practitioner and occupational physician visit, communication with the manager, and lifestyle change.ResultsA total of 82 participants were included in the analyses, 21 in the eHealth intervention–only group, 31 in the eHealth intervention–occupational physician group, and 30 in the CAU group. We found no significant difference in sickness absence frequency between the groups at 1-year follow-up. Sickness absence frequency decreased in the eHealth intervention–only group from 3 (interquartile range, IQR 3-4) to 1 episode (IQR 0.3-2.8), in the eHealth intervention–occupational physician group from 4 (IQR 3-5) to 3 episodes (IQR 1-4), and in the CAU group from 3 (IQR 3-4) to 2 episodes (IQR 1-3). For secondary outcomes, we found no significant differences between the intervention groups and the control group. The process evaluation showed that only 3 participants from the eHealth intervention–occupational physician group visited the occupational physician on invitation.ConclusionsAmong employees with frequent sickness absence, we found no effect from the eHealth intervention as a stand-alone tool in reducing sickness absence frequency, nor on total sickness absence days, burnout, engagement, or work ability. This might be due to low adherence to the intervention because of insufficient urgency to act. We cannot draw any conclusion on the effect of the eHealth intervention tool combined with an occupational physician consultation (eHealth intervention–occupational physician), due to very low adherence t...

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Active recruitment and limited participant-load related to high participation in large population-based biobank studies

Cited by 15 publications

References 67 publications

Assessing the stability of biobank donor preferences regarding sample use: evidence supporting the value of dynamic consent

Assessing the stability of biobank donor preferences regarding sample use: evidence supporting the value of dynamic consent

Questioning the rhetoric of a ‘willing population’ in Finnish biobanking

Effect of an eHealth Intervention to Reduce Sickness Absence Frequency Among Employees With Frequent Sickness Absence: Randomized Controlled Trial

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