Effectiveness of community outreach and engagement in recruitment success for a prebirth cohort

Tigges, Beth Baldwin; Kaar, Jill L.; Erbstein, Nancy; Silberman, Pamela; Winseck, Kate; Lopez-Class, Maria; Burbacher, Thomas M.

doi:10.1017/cts.2017.7

Cited by 4 publications

(8 citation statements)

References 19 publications

(36 reference statements)

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“…Engagement is key in cohort studies [ 1 ] and is often cited as important for participant recruitment [ 2 ] and retention [ 3 – 6 ]. Cohort studies, particularly those of a longitudinal nature often store large amounts of data from participants, those cohorts focusing on health are increasingly adopting periodic participant biomedical sample collection and biobanking [ 7 , 8 ].…”

Section: Introductionmentioning

confidence: 99%

“…In 1996, INVOLVE was established as part of the National Institute for Health Research (NIHR), a UK government funded program to support the involvement of the public in public health, national health service and social care research; as a national advisory group it promotes public involvement in all stages of the research process [ 16 ]. 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 ].…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2021

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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.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

et al. 2021

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“…Engagement is key in cohort studies [1] and is often cited as important for participant recruitment [2] and retention [3][4][5][6]. Given that participants are affected by the research from the cohort study, it is argued that there is a need for their voices to be considered by the study through engagement [7,8] and that this is necessary from an ethical perspective [9].…”

Section: Introductionmentioning

confidence: 99%

“…In 1996, INVOLVE was established as part of the National Institute for Health Research (NIHR), a UK government funded program to support the involvement of the public in public health, national health service and social care research; as a national advisory group it promotes public involvement in all stages of the research process [12]. 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].…”

Section: Introductionmentioning

confidence: 99%

“…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. Of the cohort studies that do report on their engagement activity, such information primarily details strategies employed to facilitate initial participant recruitment [2] or retention campaigns [4,14].…”

Section: Introductionmentioning

confidence: 99%

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

Ochieng

Minion

Turner

et al. 2021

Preprint

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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.

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Measuring the Impact of Patient Engagement in Health Research: An Exploratory Study Using Multiple Survey Tools

Marshall,

Suryaprakash,

Bryan

et al. 2023

Journal of the Canadian Association of Gastroenterology

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Background Studies report various ways in which patients are involved in research design and conduct. Limited studies explore the influence of patient engagement (PE) at each research stage in qualitative research from the perspectives of all stakeholders. Methods We established two small research groups, a Patient Researcher-Led Group and an Academic Researcher-Led Group. We recruited patient research partners (PRP; n = 5), researchers (n = 5), and clinicians (n = 4) to design and conduct qualitative research aimed at identifying candidate attributes related to patient preferences for tapering biologic treatments in inflammatory bowel disease. We administered surveys before starting, two months into, and post-project work. The surveys contained items from three PE evaluation tools. We assessed the two groups regarding the influence and impact each stakeholder had during the different research stages. Results PRPs had a moderate or a great deal of influence on the critical research activities across the research stages. They indicated moderate/very/extremely meaningful engagement and agreed/strongly agreed impact of PE. PRPs helped operationalize the research question; design the study and approach; develop study materials; recruit participants; and collect and interpret the data. Conclusion The three tools together provide deeper insight into the influence of PE at each research stage. Lessons learnt from this study suggest that PE can impact many aspects of research including the design, process, and approach in the context of qualitative research, increasing the patient-centeredness of the study. More comprehensive validated tools are required that work with a more diverse subject pool and in other contexts.

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Effectiveness of community outreach and engagement in recruitment success for a prebirth cohort

Cited by 4 publications

References 19 publications

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

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

Measuring the Impact of Patient Engagement in Health Research: An Exploratory Study Using Multiple Survey Tools

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