The reported impact of public involvement in biobanks: A scoping review

Puerta, Lidia Luna; Kendall, Will; Davies, Bethan; Day, Sara; Ward, Helen

doi:10.1111/hex.13067

Cited by 19 publications

(17 citation statements)

References 65 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…A positive image of biobanks is essential and therefore we recommend improving the interaction with and the awareness of the general public and other stakeholders about the scientific and societal value of biobanks and related research. This is in line with the increased focus on public involvement 76 and return of results. 77 Furthermore, to better determine biobank value, both biobanks and involved stakeholders should shift their focus from internal biobank measures toward biobank output.…”

Section: Recommendations For Creating the Right Conditions For Sustainable Biobankingsupporting

confidence: 70%

Recommendations for a Dutch Sustainable Biobanking Environment

Stijl

Manders

Eijdems

2021

Biopreservation and Biobanking

View full text Add to dashboard Cite

Biobanks and their collections are considered essential for contemporary biomedical research and a critical resource toward personalized medicine. However, they need to operate in a sustainable manner to prevent research waste and maximize impact. Sustainability is the capacity of a biobank to remain operative, effective, and competitive over its expected lifetime. This remains a challenge given a biobank's position at the interplay of ethical, societal, scientific, and commercial values and the difficulties in finding continuous funding. In the end, biobanks are responsible for their own sustainability. Still, biobanks also depend on their surrounding environment, which contains overarching legislative, policy, financial, and other factors that can either impede or promote sustainability. The Biobanking and Biomolecular Research Infrastructure for The Netherlands ( ) has worked on improving the national environment for sustainable biobanking. In this article, we present the final outcomes of this project. First, we summarize the current overarching challenges of the Dutch biobanking landscape. These challenges were gathered during workshops and focus groups with Dutch biobanks and their users, for which the full results are described in separate reports. The main overarching challenges relate to sample and data quality, funding, use and reuse, findability and accessibility, and the general image of biobanks. Second, we propose a package of recommendations—across nine themes—toward creating overarching conditions that stimulate and enable sustainable biobanking. These recommendations serve as a guideline for the Dutch biobanking community and their stakeholders to jointly work toward practical implementation and a better biobanking environment. There are undoubtedly parallels between the Dutch situation and the challenges found in other countries. We hope that sharing our project's approach, outcomes, and recommendations will support other countries in their efforts toward sustainable biobanking.

show abstract

Section: Recommendations For Creating the Right Conditions For Sustainable Biobankingsupporting

confidence: 70%

Recommendations for a Dutch Sustainable Biobanking Environment

Stijl

Manders

Eijdems

2021

Biopreservation and Biobanking

View full text Add to dashboard Cite

show abstract

“…However, within cohort studies involving healthy participants, engagement can sometimes be omitted from study plans, partly due to a lack of recognition of its importance and partly due to a perception that it is resource intensive (financial and time) [ 2 , 6 ]. In current practice different organisations use the term engagement differentially and ambiguously [ 17 ]. Recently, studies have been conducted on cohort studies’ recruitment and retention strategies [ 2 ], however these have not reported on the participants’ experiences of their own engagement.…”

Section: Introductionmentioning

confidence: 99%

“…Crucially, the results presented here are also aimed at providing a data-backed and evidenced theoretical underpinning for participants’ engagement in cohort studies. The persisting ambiguity and need for theorisation and conceptualisation of participant engagement is an on-going gap in practice [ 17 ].…”

Section: Introductionmentioning

confidence: 99%

What does engagement mean to participants in longitudinal cohort studies? A qualitative study

et al. 2021

View full text Add to dashboard Cite

Background Engagement is important within cohort studies for a number of reasons. It is argued that engaging participants within the studies they are involved in may promote their recruitment and retention within the studies. Participant input can also improve study designs, make them more acceptable for uptake by participants and aid in contextualising research communication to participants. Ultimately it is also argued that engagement needs to provide an avenue for participants to feedback to the cohort study and that this is an ethical imperative. This study sought to explore the participants’ experiences and thoughts of their engagement with their birth cohort study. Methods Participants were recruited from the Children of the 90s (CO90s) study. Qualitative semi-structured interviews were conducted with 42 participants. The interviews were transcribed verbatim, and uploaded onto Nvivo software. They were then analysed via thematic analysis with a constant comparison technique. Results Participants’ experiences of their engagement with CO90s were broadly based on three aspects: communication they received from CO90s, experiences of ethical conduct from CO90s and receiving rewards from CO90s. The communication received from CO90s, ranged from newsletters explaining study findings and future studies, to more personal forms like annual greeting cards posted to each participant. Ethical conduct from CO90s mainly involved participants understanding that CO90s would keep their information confidential, that it was only involved in ‘good’ ethical research and their expectation that CO90s would always prioritise participant welfare. Some of the gifts participants said they received at CO90s included toys, shopping vouchers, results from clinical tests, and time off from school to attend data collection (Focus) days. Participants also described a temporality in their engagement with CO90s and the subsequent trust they had developed for the cohort study. Conclusion The experiences of engagement described by participants were theorized as being based on reciprocity which was sometimes overt and other times more nuanced. We further provide empirical evidence of participants’ expectation for a reciprocal interaction with their cohort study while highlighting the trust that such an interaction fosters. Our study therefore provides key insights for other cohort studies on what participants value in their interactions with their cohort studies.

show abstract

“…Crucially, the results presented here are also aimed at providing a data-backed and evidenced theoretical underpinning for participants' engagement in cohort studies. The persisting ambiguity and need for theorisation and conceptualisation of participant engagement is an on-going gap in practice [13].…”

Section: Introductionmentioning

confidence: 99%

“…However, within cohort studies involving healthy participants, engagement can sometimes be omitted from study plans, partly due to a lack of recognition of its important and partly due to a perception that it is resource intensive ( nancial and time) [6,2]. In current practice different organisations use the term engagement differentially and ambiguously [13]. Recently, studies have been conducted on cohort studies' recruitment and retention strategies [2], however these have not reported on the participants' experiences of their own engagement.…”

Section: Introductionmentioning

confidence: 99%

What does engagement mean to participants in longitudinal cohort studies? A qualitative study

Ochieng

Minion

Turner

et al. 2021

Preprint

View full text Add to dashboard Cite

Background Engagement is important within cohort studies for a number of reasons. It is argued that engaging participants within the studies their involved in may promote their recruitment and retention within the studies. It is also thought that participant input can improve study designs, make them more acceptable for uptake by participants and aid in contextualising research communication to participants. Ultimately it is also argued that engagement needs to provide an avenue for participants to feedback to the cohort study and that this is an ethical imperative. This study sought to explore the participants’ experiences and thoughts of their engagement with their birth cohort study. Methods Participants were recruited from the Children of the 90s (CO90s) study. Qualitative semi-structured interviews were conducted with 42 participants. The interviews were transcribed verbatim, and uploaded onto Nvivo software. They were then analysed via thematic analysis with a constant comparison technique. Results Participants’ experiences of their engagement with CO90s were broadly based on three aspects: communication they received from CO90s, experiences of ethical conduct from CO90s and receiving rewards from CO90s. The communication received from CO90s, ranged from newsletters explaining study findings and future studies, to more personal forms like annual greeting cards posted to each participant. Ethical conduct from CO90s mainly involved participants understanding that CO90s would keep their information confidential, that it was only involved in ‘good’ ethical research and their expectation that CO90s would always prioritise participant welfare. Some of the gifts participants said they received at CO90s included toys, shopping vouchers, results from clinical tests, and time off from school to attend data collection (Focus) days. Participants also described a temporality in their engagement with CO90s and the subsequent trust they had developed for the cohort study. Conclusions The experiences of engagement described by participants were theorized as being based on reciprocity which was sometimes overt -in receiving gifts from CO90s and other times more nuanced- for example through CO90s ethical conduct. This perceived reciprocity aligns well with Maussian conception of gifting and in this case espoused participants’ trust in the cohort resulting in a unique participant-cohort study relationship.

show abstract

The reported impact of public involvement in biobanks: A scoping review

Cited by 19 publications

References 65 publications

Recommendations for a Dutch Sustainable Biobanking Environment

Recommendations for a Dutch Sustainable Biobanking Environment

What does engagement mean to participants in longitudinal cohort studies? A qualitative study

What does engagement mean to participants in longitudinal cohort studies? A qualitative study

Contact Info

Product

Resources

About