Reasons behind the participation in biomedical research: a brief review

Dainesi, Sonia Mansoldo; Goldbaum, Moisés

doi:10.1590/1809-4503201400040004

Cited by 21 publications

(24 citation statements)

References 27 publications

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“…Participant retention may also be partially dependent on the engagement strategies used in remote research. While most studies assume participants will remain in a study for altruistic reasons 38 , other studies provide compensation for participant time 39 , leverage partnerships with local community organizations, clinical registries, and clinicians to encourage participation 23 , 24 . Although monetary incentives are known to increase participation in research 40 , we know little about the relative impact of demographics, recruitment and different engagement strategies on participant retention, especially in remote health research.…”

Section: Introductionmentioning

confidence: 99%

Indicators of retention in remote digital health studies: a cross-study evaluation of 100,000 participants

et al. 2020

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Digital technologies such as smartphones are transforming the way scientists conduct biomedical research using real-world data. Several remotely-conducted studies have recruited thousands of participants over a span of a few months. Unfortunately, these studies are hampered by substantial participant attrition, calling into question the representativeness of the collected data including generalizability of findings from these studies. We report the challenges in retention and recruitment in eight remote digital health studies comprising over 100,000 participants who participated for more than 850,000 days, completing close to 3.5 million remote health evaluations. Survival modeling surfaced several factors significantly associated(P < 1e-16) with increase in median retention time i) Clinician referral(increase of 40 days), ii) Effect of compensation (22 days), iii) Clinical conditions of interest to the study (7 days) and iv)Older adults(4 days). Additionally, four distinct patterns of daily app usage behavior that were also associated(P < 1e-10) with participant demographics were identified. Most studies were not able to recruit a representative sample, either demographically or regionally. Combined together these findings can help inform recruitment and retention strategies to enable equitable participation of populations in future digital health research.

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Section: Introductionmentioning

confidence: 99%

Indicators of retention in remote digital health studies: a cross-study evaluation of 100,000 participants

et al. 2020

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“…The common denominator for the difficulties to recruit patients for RCTs is disagreement of study conditions with patient preferences and values. Although we know that only 5% of adults but 70% of children are included in oncology trials, 8 , 9 it is not yet possible to identify prospectively the adults who will finally participate in a clinical trial. Neither do we know methods that increase the motivation for participation.…”

Section: Introductionmentioning

confidence: 99%

Efficacy and effectiveness trials have different goals, use different tools, and generate different messages

Porzsolt¹,

Rocha²,

Toledo-Arruda³

et al. 2015

POR

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The discussion about the optimal design of clinical trials reflects the perspectives of theory-based scientists and practice-based clinicians. Scientists compare the theory with published results. They observe a continuum from explanatory to pragmatic trials. Clinicians compare the problem they want to solve by completing a clinical trial with the results they can read in the literature. They observe a mixture of what they want and what they get. None of them can solve the problem without the support of the other. Here, we summarize the results of discussions with scientists and clinicians. All participants were interested to understand and analyze the arguments of the other side. As a result of this process, we conclude that scientists tell what they see, a continuum from clear explanatory to clear pragmatic trials. Clinicians tell what they want to see, a clear explanatory trial to describe the expected effects under ideal study conditions and a clear pragmatic trial to describe the observed effects under real-world conditions. Following this discussion, the solution was not too difficult. When we accept what we see, we will not get what we want. If we discuss a necessary change of management, we will end up with the conclusion that two types of studies are necessary to demonstrate efficacy and effectiveness. Efficacy can be demonstrated in an explanatory, ie, a randomized controlled trial (RCT) completed under ideal study conditions. Effectiveness can be demonstrated in an observational, ie, a pragmatic controlled trial (PCT) completed under real-world conditions. It is impossible to design a trial which can detect efficacy and effectiveness simultaneously. The RCTs describe what we may expect in health care, while the PCTs describe what we really observe.

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“…The vulnerability is also a relevant issue in cases where the attending physician is the one who recruits patients for the research. There are two main reasons to agree on research participation: altruism, directly related to the feeling of doing good to others; and the trade-offs, as direct financial reimbursement or improvement in access to health services, treatments or diagnostic elements (16). The asymmetry of doctor-patient relationship (17) can lead to an obstacle in the refusal to participate, which may be perceived as conditioner of it, despite the common phrase in the consent forms that ensures that no prejudice can result from its non-acceptance.…”

Section: Autonomy In Special Casesmentioning

confidence: 99%

Informed Consent for Case Reports - an Ethical Perspective

Santos

Hespanhol

2017

Acta bioeth.

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The case report is a special type of scientific publication that focuses on a single patient, raising problems of confidentiality, as the exposure of the intimacy may facilitate identification of the participants. The legitimacy for the public disclosure derives from the informed consent, ensuring the preservation of patients' self-determination. In this article, we discuss aspects of autonomy as basic ethical principle, framing under the Portuguese Law. In the case reports, as in any clinical investigation, the will of the patient should prevail over the interests of research and researchers, even when he is unable to consent, like the minors, the disabled or the deceased, enforcing the legal rules and addressing to the active involvement of the guardians and the relatives.

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Reasons behind the participation in biomedical research: a brief review

Cited by 21 publications

References 27 publications

Indicators of retention in remote digital health studies: a cross-study evaluation of 100,000 participants

Indicators of retention in remote digital health studies: a cross-study evaluation of 100,000 participants

Efficacy and effectiveness trials have different goals, use different tools, and generate different messages

Informed Consent for Case Reports - an Ethical Perspective

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