Audience segmentation as a strategy for enhancing the use of research registries for recruiting patients into clinical trials

Flood‐Grady, Elizabeth; Liu, Jiawei; Paige, Samantha R.; Lee, Donghee N.; Nelson, David R.; Shenkman, Elizabeth; Hough, Deaven; Krieger, Janice L.

doi:10.1016/j.conctc.2019.100510

Cited by 7 publications

(5 citation statements)

References 32 publications

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“…Disease registries have been used with variable success to identify and contact research participants and may provide an alternative to clinic or primary care recruitment for some people, particularly if access can be facilitated by carers or family members [ 13 ]. However, such registries will only be of use if they include patients with multimorbidity rather than a single, narrowly defined disease.…”

Section: Changes In How We Deliver Research For Older Peoplementioning

confidence: 99%

Research with older people in a world with COVID-19: identification of current and future priorities, challenges and opportunities

et al. 2020

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Older people are disproportionately affected by the COVID-19 pandemic, which has had a profound impact on research as well as clinical service delivery. This commentary identifies key challenges and opportunities in continuing to conduct research with and for older people, both during and after the current pandemic. It shares opinions from responders to an international survey, a range of academic authors and opinions from specialist societies. Priorities in COVID-19 research include its specific presentation in older people, consequences for physical, cognitive and psychological health, treatments and vaccines, rehabilitation, supporting care homes more effectively, the impact of social distancing, lockdown policies and system reconfiguration to provide best health and social care for older people. COVID-19 research needs to be inclusive, particularly involving older people living with frailty, cognitive impairment or multimorbidity, and those living in care homes. Non-COVID-19 related research for older people remains of critical importance and must not be neglected in the rush to study the pandemic. Profound changes are required in the way that we design and deliver research for older people in a world where movement and face-to-face contact are restricted, but we also highlight new opportunities such as the ability to collaborate more widely and to design and deliver research efficiently at scale and speed.

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Section: Changes In How We Deliver Research For Older Peoplementioning

confidence: 99%

Research with older people in a world with COVID-19: identification of current and future priorities, challenges and opportunities

et al. 2020

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“…In a sample of African American women, a loss-framed message was more effective at increasing intent to enroll in a health study than a gain-framed message, but only for women with high self-efficacy in their ability to enroll. While self-efficacy to participate in research has been demonstrated as important in other studies [ 38 ], this is the first evidence of loss-framed messages being more effective. Loss-framed messages can engender a deeper processing of message content than gain-framed messages and may be useful within recruitment materials [ 39 ].…”

Section: Introductionmentioning

confidence: 75%

A Web-Based Intervention to Increase Smokers’ Intentions to Participate in a Cessation Study Offered at the Point of Lung Screening: Factorial Randomized Trial

Neil¹,

Chang²,

Goshe³

et al. 2021

JMIR Form Res

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Background Screen ASSIST is a cessation trial offered to current smokers at the point of lung cancer screening. Because of the unique position of promoting a prevention behavior (smoking cessation) within the context of a detection behavior (lung cancer screening), this study employed prospect theory to design and formatively evaluate a targeted recruitment video prior to trial launch. Objective The aim of this study was to identify which message frames were most effective at promoting intent to participate in a smoking cessation study. Methods Participants were recruited from a proprietary opt-in online panel company and randomized to a 2 (benefits of quitting vs risks of continuing to smoke at the time of lung screening; BvR) × 2 (gains of participating vs losses of not participating in a cessation study; GvL) message design experiment (N=314). The primary outcome was self-assessed intent to participate in a smoking cessation study. Message effectiveness and lung cancer risk perception measures were also collected. Analysis of variance examined the main effect of the 2 message factors and a least absolute shrinkage and selection operator (LASSO) approach identified predictors of intent to participate in a multivariable model. A mediation analysis was conducted to determine the direct and indirect effects of message factors on intent to participate in a cessation study. Results A total of 296 participants completed the intervention. There were no significant differences in intent to participate in a smoking cessation study between message frames (P=.12 and P=.61). In the multivariable model, quit importance (P<.001), perceived message relevance (P<.001), and affective risk response (ie, worry about developing lung cancer; P<.001) were significant predictors of intent to participate. The benefits of quitting frame significantly increased affective risk response (Meanbenefits 2.60 vs Meanrisk 2.40; P=.03), which mediated the relationship between message frame and intent to participate (b=0.24; 95% CI 0.01-0.47; P=.03). Conclusions This study provides theoretical and practical guidance on how to design and evaluate proactive recruitment messages for a cessation trial. Based on our findings, we conclude that heavy smokers are more responsive to recruitment messages that frame the benefits of quitting as it increased affective risk response, which predicted greater intention to participate in a smoking cessation study.

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“…31 Retention strategies for the future registry will be informed from the literature, 27,32,33 consulting with colleagues who have experience of leading registries, and, most importantly, engaging people with CRPS via online focus groups to gain the insight of the intended registry population. 34,35 Retention strategies for consideration include offering alternative methods of data collection, regular contact with participants and developing a registry ‘community’.…”

Section: Discussionmentioning

confidence: 99%

An international study to explore the feasibility of collecting standardised outcome data for Complex Regional Pain Syndrome: recommendations for an international clinical research registry

Grieve

Brunner

Cabral

et al. 2023

British Journal of Pain

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Introduction Complex Regional Pain Syndrome (CRPS) is a persistent pain condition with low prevalence. Multi-centre collaborative research is needed to attain sufficient sample sizes for meaningful studies. This international observational study: (1) tested the feasibility and acceptability of collecting outcome data using an agreed core measurement set (2) tested and refined an electronic data management system to collect and manage the data. Methods Adults with CRPS, meeting the Budapest diagnostic clinical criteria, were recruited to the study from 7 international research centres. After informed consent, a questionnaire comprising the core set outcome measures was completed: on paper at baseline (T1), and at 3 or 6 months (T2) using a paper or e-version. Participants and clinicians provided feedback on the data collection process. Clinicians completed the CRPS severity score at T1 and optionally, at T2. Ethical approval was obtained at each international centre. Results Ninety-eight adults were recruited (female n=66; mean age 46.6 years, range 19-89), of whom 32% chose to receive the T2 questionnaire in an electronic format. Fifty-five participants completed both T1 and T2. Eighteen participants and nine clinicians provided feedback on their data collection experience. Conclusion This study confirmed the questionnaire core outcome data are feasible and practicable to collect in clinical practice. The electronic data management system provided a robust means of collecting and managing the data across an international population. The findings have informed the final data collection tools and processes which will comprise the first international, clinical research registry and data bank for CRPS.

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Audience segmentation as a strategy for enhancing the use of research registries for recruiting patients into clinical trials

Cited by 7 publications

References 32 publications

Research with older people in a world with COVID-19: identification of current and future priorities, challenges and opportunities

Research with older people in a world with COVID-19: identification of current and future priorities, challenges and opportunities

A Web-Based Intervention to Increase Smokers’ Intentions to Participate in a Cessation Study Offered at the Point of Lung Screening: Factorial Randomized Trial

An international study to explore the feasibility of collecting standardised outcome data for Complex Regional Pain Syndrome: recommendations for an international clinical research registry

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