Public attitudes to the use of remote data collection in clinical research.
Ontology highlight
ABSTRACT: Background/aims
Coronavirus Disease 2019 (COVID-19) has presented an unprecedented challenge for delivering clinical research. The use of technology-assisted data collection for clinical research is desirable for many practitioners, but the acceptability of use in the general population has not been assessed. The aim of the study was to assess attitudes towards using technology-assisted remote methods in the delivery of clinical research in the UK and to understand the barriers to taking part in research with respect to both remote assessments and traditional research methods across different age ranges.Methods
The study was conducted as an online anonymous survey with a 4-part questionnaire, between August 2020 and December 2020. Participants living in the UK aged 18 years and above were eligible to take part.Results
A total 351 completed the survey and are included in the data analysis. In all age groups, participants identified that use of online assignments, video calls and telephone calls would make them more likely to take part in clinical research. Overall, the largest barrier to taking part in research was time commitments and timing of the appointment. COVID-19 has had a small, positive influence on the confidence of using technology in the general population.Conclusions
The study found that there is a large interest in taking part in research using online, telephone and video call appointments, which could facilitate research delivery in light of ongoing COVID-19-related restrictions and also improve the accessibility and inclusivity of research.
SUBMITTER: Neumann S
PROVIDER: S-EPMC8511885 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:ImportanceEffective, continuous improvement in patient engagement depends on an intimate understanding of public and patient perceptions and experiences in clinical research.ObjectivesTo identify the views of clinical trial participants and nonparticipants and characterize trends in these views over time.Design, setting, and participantsIn this survey study, a questionnaire was administered online from May 8 to July 24, 2017, by the Center for Information and Study on Clinical Research Participation (CISCRP), and findings were compared with previous studies conducted in 2013 and 2015. The 2017 sample included responses from 12 427 individuals from 68 countries and represents a 10% participation rate. Similar to international assessments conducted by the CISCRP and other organizations, this study drew responses from a convenience sample; any adult older than 18 years who received an email or had online access was eligible to participate.Main outcomes and measuresSignificant changes were observed in the perceptions and clinical trial experiences of the public and study volunteers compared with past CISCRP studies.ResultsA total of 12 427 individuals (mean [SD] age, 55 [15] years; 7355 [59.2%] female; 10 085 [81.2%] white), 2194 (17.7%) of whom had participated in previous clinical research studies, responded to the survey in 2017. Findings indicated a belief in the importance of clinical research, but limited understanding of the research process persists. In 2017, a total of 10 506 individuals (84.5%) perceived clinical research to be very important to the discovery and development of new medicines; however, 4079 of 6919 respondents (59.0%) were unable to name a place where studies were conducted. A total of 11 182 respondents (90.0%) believed that clinical research is generally safe; however, 5578 of 12 427 individuals (44.9%) reported that clinical trials are rarely considered as an option when discussing treatments or medications with their physician. Clinical trial participation was perceived as inconvenient and burdensome; in the latest survey, 1075 respondents (49.0%) expressed that their clinical trial participation disrupted their daily routine.Conclusions and relevanceThe results of this study may provide a foundation from which to build meaningful and effective engagement with the public and patients and revealed roadblocks, including knowledge gaps among the public, limited physician involvement in discussing clinical trials as treatment options, and the inconveniences that patients encounter after they volunteer to participate. These findings may inform patient engagement strategies and tactics and ultimately help accelerate the drug-development process.
| S-EPMC6324429 | biostudies-literature
Project description:We conducted an online experimental survey to evaluate attitudes toward an authorization for contact (AFC) program allowing researchers to contact patients about studies based on electronic record review. A total of 1070 participants were randomly assigned to 1 of 3 flyers varying in design and framing. Participants were asked to select concerns about and reasons for signing up for AFC. Logistic regression and latent class analysis were conducted. The most commonly selected concerns included needing more information (43%), privacy (40%), and needing more time to think (28%). A minority were not interested in participating in research (16%) and did not want to be bothered (15%). Latent class analysis identified clusters with specific concerns about privacy, lack of interest in research, and not wanting to be bothered. A novel flyer with simple and positive framing was associated with lower odds of both not wanting to be bothered (P = .01) and not being interested in research (P = .01). Many concerns about AFC programs appear nonspecific. Addressing privacy, lack of interest in research, and not wanting to be bothered warrant further study as ways to enhance recruitment.
| S-EPMC7883977 | biostudies-literature
Project description:BackgroundThe SARS-CoV-2 pandemic has highlighted once more the great need for comprehensive access to, and uncomplicated use of, pre-existing patient data for medical research. Enabling secondary research-use of patient-data is a prerequisite for the efficient and sustainable promotion of translation and personalisation in medicine, and for the advancement of public-health. However, balancing the legitimate interests of scientists in broad and unrestricted data-access and the demand for individual autonomy, privacy and social justice is a great challenge for patient-based medical research.MethodsWe therefore conducted two questionnaire-based surveys among North-German outpatients (n = 650) to determine their attitude towards data-donation for medical research, implemented as an opt-out-process.ResultsWe observed a high level of acceptance (75.0%), the most powerful predictor of a positive attitude towards data-donation was the conviction that every citizen has a duty to contribute to the improvement of medical research (> 80% of participants approving data-donation). Interestingly, patients distinguished sharply between research inside and outside the EU, despite a general awareness that universities and public research institutions cooperate with commercial companies, willingness to allow use of donated data by the latter was very low (7.1% to 29.1%, depending upon location of company). The most popular measures among interviewees to counteract reservations against commercial data-use were regulation by law (61.4%), stipulating in the process that data are not sold or resold (84.6%). A majority requested control of both the use (46.8%) and the protection (41.5%) of the data by independent bodies.ConclusionsIn conclusion, data-donation for medical research, implemented as a combination of legal entitlement and easy-to-exercise-right to opt-out, was found to be widely supported by German patients and therefore warrants further consideration for a transposition into national law.
| S-EPMC8672332 | biostudies-literature
Project description:Remote data collection procedures can strengthen developmental science by addressing current limitations to in-person data collection and helping recruit more diverse and larger samples of participants. Thus, remote data collection opens an opportunity for more equitable and more replicable developmental science. However, it remains an open question whether remote data collection procedures with children participants produce results comparable to those obtained using in-person data collection. This knowledge is critical to integrate results across studies using different data collection procedures. We developed novel web-based versions of two tasks that have been used in prior work with 4-6-year-old children and recruited children who were participating in a virtual enrichment program. We report the first successful remote replication of two key experimental effects that speak to the emergence of structured semantic representations (N = 52) and their role in inferential reasoning (N = 40). We discuss the implications of these findings for using remote data collection with children participants, for maintaining research collaborations with community settings, and for strengthening methodological practices in developmental science.
| S-EPMC8377201 | biostudies-literature
Project description:Internet-based crowdsourcing is increasingly used for social and behavioral research in public health, however the potential generalizability of crowdsourced data remains unclear. This study assessed the population representativeness of Internet-based crowdsourced data.A total of 3999 U.S. young adults ages 18 to 30years were recruited in 2016 through Internet-based crowdsourcing to complete measures taken from the 2012-2013 National Adult Tobacco Survey (NATS). Post-hoc sampling weights were created using procedures similar to the NATS. Weighted analyses were conducted in 2016 to compare crowdsourced and publicly-available 2012-2013 NATS data on demographics, tobacco use, and measures of tobacco perceptions and product warning label exposure.Those in the crowdsourced sample were less likely to report an annual household income of $50,000 or greater, and e-cigarette, waterpipe, and cigar use were more prevalent in the crowdsourced sample. High proportions of both samples indicated cigarette smoking is very harmful and very addictive. Comparable proportions of non-smokers and smokers reported cigarette warning label exposure, however the likelihood of reporting that smoking is very harmful by frequency of warning label exposure was lower among smokers in the crowdsourced sample.Our findings indicate that crowdsourced samples may differ demographically and may not produce generalizable estimates of tobacco use prevalence relative to population data after post-hoc sample weighting. However, correlational analyses in crowdsourced samples may reasonably approximate population data. Future studies can build from this work by testing additional methodological strategies to improve crowdsourced sampling strategies.
| S-EPMC5557015 | biostudies-literature
Project description:The COVID-19 pandemic put clinical research in the media spotlight globally. This article proposes a first measure of familiarity with and attitude toward clinical research in France. Drawing from the "Health Literacy Survey 2019" (HLS19) conducted online between 27 May and 5 June 2020 on a sample of the French adult population (N = 1003), we show that a significant proportion of the French population claimed some familiarity with clinical trials (64.8%) and had positive attitudes (72%) toward them. One of the important findings of this study is that positive attitudes toward clinical research exist side by side with a strong distancing from the pharmaceutical industry. While respondents acknowledged that the pharmaceutical industry plays an important role in clinical research (68.3%), only one-quarter indicated that they trust the industry (25.7%). Positive attitudes toward clinical trials were associated with familiarity with clinical trials (Odds Ratio, OR 2.97 [1.90-4.63]), financial difficulties (OR 0.63 [0.46-0.85]), as well as mistrust of doctors (0.48 [0.27-0.85]) and of scientists (OR 0.62 [0.38-0.99]). Although the French media provided a great deal of information on how clinical research works during the first months of the pandemic, there remains profound mistrust of the pharmaceutical industry in France. This suspicion can undermine crisis management, especially in the areas of vaccine development and preparation for future pandemics.
| S-EPMC7967331 | biostudies-literature
Project description:Cryo-electron tomography (cryo-ET) has been gaining momentum in recent years, especially since the introduction of direct electron detectors, improved automated acquisition strategies, preparative techniques that expand the possibilities of what the electron microscope can image at high-resolution using cryo-ET and new subtomogram averaging software. Additionally, data acquisition has become increasingly streamlined, making it more accessible to many users. The SARS-CoV-2 pandemic has further accelerated remote cryo-electron microscopy (cryo-EM) data collection, especially for single-particle cryo-EM, in many facilities globally, providing uninterrupted user access to state-of-the-art instruments during the pandemic. With the recent advances in Tomo5 (software for 3D electron tomography), remote cryo-ET data collection has become robust and easy to handle from anywhere in the world. This article aims to provide a detailed walk-through, starting from the data collection setup in the tomography software for the process of a (remote) cryo-ET data collection session with detailed troubleshooting. The (remote) data collection protocol is further complemented with the workflow for structure determination at near-atomic resolution by subtomogram averaging with emClarity, using apoferritin as an example.
| S-EPMC10006545 | biostudies-literature
Project description:BackgroundFor biomedical data-driven research purposes, secondary use of clinical data carries great but largely untapped potential. Physicians' attitudes and their needs towards secondary data use are essential to inform its practical and ethically sound implementation but are currently understudied.ObjectiveTherefore, the objectives of the study are to assess physicians' (i) general attitudes and concerns, (ii) willingness to adapt workflows and to make data available for secondary use, (iii) group-specific conditions toward implementation of secondary use and associated concerns of physician-scientists and purely clinical physicians.MethodsWe developed an online survey based on a literature review and an expert interview study. Physicians in private practice and at two large German university hospitals were surveyed from May 2021 until January 2022.ResultsIn total, 446 physicians participated in the survey. 96% [380/397] of all physicians reported a positive attitude towards secondary use; 87% [31/397] are in-principle willing to support secondary use of clinical data along with a small proportion of physicians with fundamental reservations. Secondly, the most important conditions for adapting workflows were funding of additional time and effort for research-adequate documentation (71% [286/390]) and the most important condition for providing patients' clinical data was reliable protection of patients' privacy (67% [254/382]). Thirdly, physician-scientists were more likely than purely clinical physicians to request additional funding for research-adequate documentation as a precondition for support (83% vs 69%, P = .002) and the privilege to conduct research with their own patients' clinical data before other researchers are allowed to (43% vs 11%, P < .001); while purely clinical physicians more frequently require reliable protection of patient privacy (76% vs 62%, P = .007) and monetary compensation (45% vs 25%, P < .001).ConclusionSince this study presents high in-principle willingness of physicians to support secondary use along with little general concerns, it seems essential to address physicians' group-specific conditions toward secondary use in order to gain their support.
| S-EPMC10863899 | biostudies-literature
Project description:Investigating the influence of perception on the control of visually guided action typically involves controlled experimentation within the laboratory setting. When appropriate, however, behavioral research of this nature may benefit from the use of methods that allow for remote data collection outside of the lab. This study tested the feasibility of using remote data collection methods to explore the influence of perceived target size on visually guided cursor movements using the Ebbinghaus illusion. Participants completed the experiment remotely, using the trackpad of their personal laptop computers. The task required participants to click on a single circular target presented at either the left or right side of their screen as quickly and accurately as possible (Experiment 1), or to emphasize speed (Experiment 2) or accuracy (Experiment 3). On each trial the target was either surrounded by small or large context circles, or no context circles. Participants' judgments of the targets' perceived size were influenced by the illusion, however, the illusion failed to produce differences in click-point accuracy or movement time. Interestingly, the illusion appeared to affect participants' movement of the cursor toward the target; more directional changes were made when clicking the Perceived Large version of the illusion compared to the Perceived Small version. These results suggest the planning of the cursor movement may have been influenced by the illusion, while later stages of the movement were not, and cursor movements directed toward targets perceived as smaller required less correction compared to targets perceived as larger.
| S-EPMC9478591 | biostudies-literature
Project description:ObjectiveTreatment of OA by stratifying for commonly used and novel therapies will likely improve the range of effective therapy options and their rational deployment in this undertreated, chronic disease. In order to develop appropriate datasets for conducting post hoc analyses to inform approaches to stratification for OA, our aim was to develop recommendations on the minimum data that should be recorded at baseline in all future OA interventional and observational studies.MethodsAn Arthritis Research UK study group comprised of 32 experts used a Delphi-style approach supported by a literature review of systematic reviews to come to a consensus on core data collection for OA studies.ResultsThirty-five systematic reviews were used as the basis for the consensus group discussion. For studies with a primary structural endpoint, core domains for collection were defined as BMI, age, gender, racial origin, comorbidities, baseline OA pain, pain in other joints and occupation. In addition to the items generalizable to all anatomical sites, joint-specific domains included radiographic measures, surgical history and anatomical factors, including alignment. To demonstrate clinical relevance for symptom studies, the collection of mental health score, self-efficacy and depression scales were advised in addition to the above.ConclusionsCurrently it is not possible to stratify patients with OA into therapeutic groups. A list of core and optional data to be collected in all OA interventional and observational studies was developed, providing a basis for future analyses to identify predictors of progression or response to treatment.
| S-EPMC4957675 | biostudies-literature