Crowdsourcing in medical research: theory and practice

Tucker, Joseph D.; Day, Suzanne; Tang, Weiming; Bayus, Barry L.

doi:10.7287/peerj.preprints.27331

Cited by 2 publications

(3 citation statements)

References 46 publications

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“…There is a large community focusing on the usage of crowdsourcing in the context of medical research [13,17,10]. The fields of application are ranging from the area of machine learning, e.g., labeling medical big data [15] or improving automatic speech recognizer [14], to recruiting participants for medical user studies [11,5].…”

Section: Crowdsourcing and Medical Researchmentioning

confidence: 99%

Crowd-Based Assessment of Deformational Cranial Asymmetries

Borchert¹,

Hirth²,

Stellzig‐Eisenhauer³

et al. 2020

IFIP Advances in Information and Communication Technology

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Crowdsourcing allows collecting subjective user ratings promptly and on a large scale. This enables, for example, building subjective models for the perception of technical systems in the field of quality of experience research or researching cultural aspects of the aesthetic appeal. In addition to research in technical domains, crowdsourced subjective ratings also gain more and more relevance in medical research, like the evaluation of aesthetic surgeries. In line with this, we illustrate a novel use-case for crowdsourced subjective ratings of deformational cranial asymmetries of newborns. Deformational cranial asymmetries are deformations of a newborn's head that might, e.g., result from resting on the same spot for a longer time. Even if there are objective metrics to assess the deformation objectively, there is only a little understanding of how those values match the severity of the deformational cranial asymmetries as subjectively perceived by humans. This paper starts filling this gap by illustrating a crowdsourcingbased solution to collect a large set of subjective ratings on examples of deformational cranial asymmetries from different groups that might have a different perception of those deformations. In particular, we consider pediatricians, parents of children with cranial deformation, and naive crowdworkers. For those groups, we further analyze the consistency of their subjective ratings, the differences of the ratings between the groups, and the effects of the study design.

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Section: Crowdsourcing and Medical Researchmentioning

confidence: 99%

Crowd-Based Assessment of Deformational Cranial Asymmetries

Borchert¹,

Hirth²,

Stellzig‐Eisenhauer³

et al. 2020

IFIP Advances in Information and Communication Technology

View full text Add to dashboard Cite

show abstract

“…Fostering sustained relationships with key community leaders in combination with promotion on social media platforms can be effective for reaching community members for participation in crowdsourcing activities to inform clinical trials. 27 Third, since a crucial element of crowdsourcing is the sharing of solutions contributed by the crowd, 24 the community feedback we obtained will be disseminated to a broader audience than just the VOR-07 clinical team. Our crowdsourcing idea contest allowed us to share finalists' winning ideas with the broader public via social media and our project website.…”

Section: Resultsmentioning

confidence: 99%

“…Crowdsourcing involves prompting participant feedback to focus on solutions to specific, pre-defined problems. 24 We identified three aspects of the VOR-07 trial where crowdsourcing engagement strategies could potentially provide community input: (1) the process of obtaining informed consent, (2) the experience of participating in the clinical trial, and (3) concepts of fairness and reciprocity in HIV clinical trials (i.e. how clinical trial researchers could give back to the community).…”

Section: Methodsmentioning

confidence: 99%

Broadening community engagement in clinical research: Designing and assessing a pilot crowdsourcing project to obtain community feedback on an HIV clinical trial

et al. 2020

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Background/Aims Community engagement is widely acknowledged as an important step in clinical trials. One underexplored method for engagement in clinical trials is crowdsourcing. Crowdsourcing involves having community members attempt to solve a problem and then publicly sharing innovative solutions. We designed and conducted a pilot using a crowdsourcing approach to obtain community feedback on an HIV clinical trial, called the Acceptability of Combined Community Engagement Strategies Study. In this work, we describe and assess the Acceptability of Combined Community Engagement Strategies Study’s crowdsourcing activities in order to examine the opportunities of crowdsourcing as a clinical trial community engagement strategy. Methods The crowdsourcing engagement activities involved in the Acceptability of Combined Community Engagement Strategies Study were conducted in the context of a phase 1 HIV antibody trial (ClinicalTrials.gov identifier: NCT03803605). We designed a series of crowdsourcing activities to collect feedback on three aspects of this clinical trial: the informed consent process, the experience of participating in the trial, and fairness/reciprocity in HIV clinical trials. All crowdsourcing activities were open to members of the general public 18 years of age or older, and participation was solicited from the local community. A group discussion was held with representatives of the clinical trial team to obtain feedback on the utility of crowdsourcing as a community engagement strategy for informing future clinical trials. Results Crowdsourcing activities made use of innovative tools and a combination of in-person and online participation opportunities to engage community members in the clinical trial feedback process. Community feedback on informed consent was collected by transforming the clinical trial’s informed consent form into a series of interactive video modules, which were screened at an open public discussion. Feedback on the experience of trial participation involved designing three fictional vignettes which were then transformed into animated videos and screened at an open public discussion. Finally, feedback on fairness/reciprocity in HIV clinical trials was collected using a crowdsourcing idea contest with online and in-person submission opportunities. Our public discussion events were attended by 38 participants in total; our idea contest received 43 submissions (27 in-person, 16 online). Facebook and Twitter metrics demonstrated substantial engagement in the project. The clinical team found crowdsourcing primarily useful for enhancing informed consent and trial recruitment. Conclusion There is sufficient lay community interest in open calls for feedback on the design and conduct of clinical trials, making crowdsourcing both a novel and feasible engagement strategy. Clinical trial researchers are encouraged to consider the opportunities of implementing crowdsourcing to inform trial processes from a community perspective.

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Crowdsourcing in medical research: theory and practice

Cited by 2 publications

References 46 publications

Crowd-Based Assessment of Deformational Cranial Asymmetries

Crowd-Based Assessment of Deformational Cranial Asymmetries

Broadening community engagement in clinical research: Designing and assessing a pilot crowdsourcing project to obtain community feedback on an HIV clinical trial

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