Perceived protectiveness of research safeguards and influences on willingness to participate in research: A novel MTurk pilot study.
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SUBMITTER: Kim JP
PROVIDER: S-EPMC8513533 | biostudies-literature | 2021 Jun
REPOSITORIES: biostudies-literature
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Perceived protectiveness of research safeguards and influences on willingness to participate in research: A novel MTurk pilot study.
Kim Jane Paik JP Ryan Katie K Tsungmey Tenzin T Kasun Max M Roberts Willa A WA Dunn Laura B LB Roberts Laura Weiss LW
Journal of psychiatric research 20210406
Little is known about how individuals with mood disorders view the protectiveness of research safeguards, and whether their views affect their willingness to participate in psychiatric research. We conducted an online survey with 80 individuals (self-reported mood disorder [n = 25], self-reported good health [n = 55]) recruited via MTurk. We assessed respondents' perceptions of the protectiveness of five common research safeguards, as well as their willingness to participate in research that inc ...[more]
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Project description:ObjectivesTo investigate general practitioners' (GPs') willingness to participate in long-term medical research and in research networks (RNs).Design and settingCross-sectional survey among German GPs around Halle-Wittenberg and Leipzig in 2020.SubjectsRandom sample of 905 GPs.Main outcome measures and resultsResponse rate 37%, 69% female. Overall, 57% were interested in participating in medical research, 34% in an active role in a RN. Interest in RN participation was positively associated with male sex, younger age, previous experiences in medical research, being involved in teaching undergraduates, and having qualification in a further specialty. Main motivators were improving patient care, giving a more realistic picture of GP care, and carrying out research on topics within their own interest areas and a reliable contact person at the leading institution. Most GPs were not afraid of reduced earnings; however, time investment was the main barrier for participation. GPs were willing to dedicate twice as much time to research when remuneration was offered. High rated topics were polypharmacy, chronic diseases, drug safety and adverse drug reactions.ConclusionGPs are interested to participate in practice-based research. The study results providing useful and generalizable insights in barriers and motivators should be considered when building and running GP-RNs.KEY POINTSThere is a difference between general practitioners' (GPs') overall interest in clinical research and their job and socio-demographic related readiness to participate in research networks (RNs).GPs are interested in RNs when it is a resource of and leading to enhanced patient-oriented care.GPs are willing to dedicate twice as much time to research when remunerated.GPs need a reliable counterpart within the leading institution.
| S-EPMC9397419 | biostudies-literature
Project description:BackgroundHigh patient participation in clinical research reduces selection bias and ensures the generalizability of study findings. We explored study-related factors that may influence patients' willingness to participate in research.MethodsWe submitted by mail two vignettes that described clinical research studies - a drug trial and a diagnostic study - to patients recently discharged from hospital and assessed their willingness to participate. We used a factorial design to randomly allocate three study attributes per vignette: in the drug trial, presumed superiority of new drug versus equipoise, public versus industry funding, and random versus non-random treatment allocation; in the diagnostic study, common versus rare disease, genetic versus protein analysis, and automatic reporting of results versus reporting on request.ResultsOf 2600 patients contacted, 1140 (44%) participated. Globally, willingness to participate in a drug trial was lower than in a diagnostic study (44.8% vs. 76.2%; P < 0.001). In the drug trial, participation was significantly higher when the new drug was presented as presumably better than the old (vs. equipoise) and when the study was funded by public sources (vs. industry), but was not affected by the allocation method. None of the factors tested in the diagnostic study was associated with participation.ConclusionsPatients were more likely to participate in a hypothetical observational diagnostic study than in a hypothetical drug trial. Participation in the trial was lower when clinical equipoise was expressed and when the trial was funded by industry. These results suggest that some features of study design can influence participation.
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Project description:BackgroundFrench community pharmacists are facing an increasing demand to provide a wider range of services to meet the needs of the population. These new missions must be evaluated by primary care research studies. This study aims to explore the factors that influence French community pharmacists' willingness to participate in research projects.MethodsA mixed-method design was adopted for this study, comprising an initial quantitative online survey followed by semi-directed interviews. The investigation was conducted at two French faculties of pharmacy, Angers and Nantes, involving students in their 6th and final year of pharmacy education, and their community pharmacist tutors. The survey items were based on a study by Saini et al. and participants responded using five-point Likert scales. The semi-directed interviews were conducted after the quantitative analysis, only with volunteer and already graduated community pharmacists.ResultsA total of 131 people participated in the quantitative analysis, comprising 75 students and 56 pharmacists. Pharmacists and students agreed on the significance of two key aspects: the research must possess a clear and meaningful purpose, and researchers must keep the pharmacists informed about the study's results. Among the 27 proposed items, only three showed significantly different results between students and pharmacists. Moreover, 11 semi-structured interviews were conducted. Research in the community pharmacy domain is relatively new for many pharmacists. Despite limited training, their willingness to participate is contingent on being actively involved from the outset, receiving appropriate support and training. However, the research should be seamlessly integrated into their daily practice, without being too time-consuming and administratively burdensome. Time constraints emerged as the main obstacle, along with concerns about the availability of human resources. Pharmacists expressed strong motivation driven by the research topic's relevance, and its potential impact on patients or the profession. While financial compensation is desirable, it did not appear to be the main criterion for participation in a study.ConclusionsFrench pharmacists are willing to participate in research projects to improve patient care and develop the profession. Research teams must guide and involve from the project's inception.
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Project description:BackgroundThis paper explores the feasibility of establishing a large-scale population-based cohort and biobank in Switzerland by assessing potential participants' needs, expectations, and concerns about such an infrastructure providing information on health, lifestyle, and exposure trajectories, the development of disease, and risk factors over time.MethodsWe utilized a scenario-based questionnaire in the Swiss Health Study pilot phase (2020-2021), involving 1349 adults aged 20-69 from the cantons Vaud and Bern. We conducted descriptive statistics supported by R and qualitative content analysis of n = 374 open responses related to attitudes towards research.ResultsWe highlight the benefits and challenges of the scenario-based approach, discuss the sample represented in the pilot phase, and present implications for building a full cohort. We also report on participants' attitudes towards and previous experience with health research. We analyze references regarding informed consent and feedback, attitudes towards the Swiss Health Study, and recommendations on improving its scope, design, and instruments. Results indicate a high interest (90%) in participating in a national health study, with 85% of a random population sample willing to join a long-term cohort. Only 43% were familiar with biobanks, and 44% preferred general consent. Trust was high for Swiss-based public research but lower for researchers from other countries or private sector. Over 95% expressed willingness to complete online questionnaires, undergo physical examination, and donate biosamples. Almost all participants wanted to know the outcomes of the medical tests (99.5%) and the exposure to environmental stressors (95%) from their study center visit. Preferred tools for monitoring sleep, physical activity, and diet were known smartphone apps with automatic data management.ConclusionOverall, the study reveals a positive attitude towards personalized health research, with a strong willingness to share data and samples. Key insights focus the meaning of informed consent for participation, the relevance of sampling and representativeness, as well as the significance and challenges of personalized feedback, especially regarding environmental health concerns. Findings emphasize participants' supportive yet reflexive stances, underscoring the importance of aligning research values with individual values in personalized health research. These insights contribute valuable considerations for refining the scope, design, and instruments of future cohort studies.
| S-EPMC11305038 | biostudies-literature
Project description:It is difficult to enlist the participation of medical general practitioners (GPs) in research studies. We aimed to determine the willingness of GPs in central Switzerland to participate in research, and to identify factors that facilitate or hinder research participation by GPs. To that end, we conducted a postal questionnaire survey of all 268 active GPs in the canton of Lucerne. The survey explored their interest in participating in research projects (yes/no) and factors that potentially influence their participation (5-point Likert scale from "very important" to "not at all important"). We contacted all non-responders by phone. Background information of the GPs was retrieved from the database of the cantonal association of physicians. Associations between willingness to participate in research and GP's age, gender, type and location of practice, and the perceived relevance of facilitators were investigated via multiple logistic regression. Out of 268 GPs, 115 (43%) agreed to be contacted for future research projects. Willingness was associated with age (willing: 55% ≤ 40 y vs. 33% > 60 y) and gender (44% male vs. 38% female), and to some degree with the type of practice (50% group vs. 31% single), and location (46% urban vs. 38% rural), independently from each other. Scientists should develop methods to motivate and support GPs in single and rural practices to participate so research is representative of primary care as a whole.
| S-EPMC6396922 | biostudies-literature
Project description:ImportanceUsing social media to recruit participants is a common and cost-effective practice. Willingness to participate (WTP) in biomedical research is a function of trust in the scientific team, which is closely tied to the source of funding and institutional connections.ObjectiveTo determine whether WTP and willingness to share social media data are associated with the type of research team and online recruitment platform.Design, setting, and participantsThis mixed-methods longitudinal survey and qualitative study was conducted over 2 points (T1 and T2) using Amazon's Mechanical Turk (MTurk) platform. Participants were US adults aged 18 years or older who use at least 1 social media platform. Recruitment was stratified to match race/ethnicity proportions of the 2010 US Census. The volunteer sample consisted of 914 participants at T1, and 655 participants completed the follow-up survey 5 months later (T2).Main outcomes and measuresOutcomes were (1) past experience with online research and sharing social media data for research; (2) WTP in research advertised online; (3) WTP in a study sponsored by a pharmaceutical company, a university, or a federal agency; and (4) willingness to share social media data. Opinions were solicited regarding the European Union's General Data Protection Regulation statute, which came into effect between T1 and T2.ResultsOf 914 participants completing the first survey (T1), 604 (66.1%) were aged 18 to 39 years and 494 (54.0%) were female. Of these, 655 participants (71.7%) responded at T2. While 680 participants (74.4%) indicated WTP in biomedical research, only 454 (49.3%) were willing to share their social media data. Participants were significantly less likely to participate in federally sponsored (odds ratio [OR], 0.58; 95% CI, 0.51-0.64; P < .001) or pharmaceutical company (OR, 0.59; 95% CI, 0.53-0.66; P < .001) research than university-led studies. They were also less likely to share their social medial data for federal (OR, 0.65; 95% CI, 0.58-0.72; P < .001) or pharmaceutical company (OR, 0.50; 95% CI, 0.44-0.56; P < .001) research compared with academic studies. Willingness to participate in pharmaceutical company-led research decreased 11.89% from T1 to T2 (OR for T2, 0.62; 95% CI, 0.54-0.77; P < .001). Reasons for WTP were interest in furthering science, financial incentives, trust in the organization, and data security. While 63.0% of respondents reported seeing new privacy policy emails related to the General Data Protection Regulation law, only 27.1% indicated this positively influenced their WTP. Thematic analysis of responses indicated that WTP may improve with stronger data security measures.Conclusions and relevanceThis study suggests that researchers may see reduced online research participation and data sharing, particularly for research conducted outside academia.
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Project description:ObjectiveLittle is known about willingness among people living with HIV (PLHIV) to participate in HIV cure research in the Netherlands. We compared results of a cross-sectional questionnaire assessing hypothetical willingness to actual willingness among PLHIV to take part in a clinical HIV cure trial.MethodsBetween March and June 2018, PLHIV visiting the outpatient clinic of a university hospital in the Netherlands were asked to complete a questionnaire about HIV cure research. Results were compared to the number of PLHIV willing to take part in an actual HIV cure study at the same center during an overlapping time period.ResultsIn total, 165 participants, predominantly male (80%) from Western European countries (61%) completed the questionnaire. The majority would participate in cure research (n = 111, 67%). Separately, actual willingness among PLHIV to participate in an HIV cure study was addressed in 312 cases. Apart from gender (96% male), baseline characteristics were comparable. Less than half expressed actual willingness to participate in the study (n = 135, 43%).ConclusionsHypothetical willingness to participate in cure-related research was high among PLHIV who completed the questionnaire. Actual willingness among eligible PLHIV to take part in an HIV cure study was much lower. Our findings show that questionnaires may overestimate willingness to participate in HIV cure trials and indicate that reasons for refusal in actual research should be further explored.
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Project description:BackgroundMotor impairment and travel time have been shown to be important barriers to recruitment for Parkinson's disease (PD) clinical trials. This study determined whether use of Internet-based video communication for study visits would improve likelihood of participating in PD clinical trials.Subjects and methodsUniversity of Utah PD clinic patients were invited to complete a survey asking if they would be willing to participate in a hypothetical research study under four different scenarios. McNemar's test was used to test the hypothesis that remote assessments would improve willingness to participate.ResultsWillingness to participate was 101/113 (87%) in the standard scenario. Willingness to participate was highest (93%; p=0.046) with most visits occurring via telemedicine at a local clinic, followed by some visits occurring via telemedicine at a local clinic (91%; p=0.157). Willingness to participate was lower with some (80%; p=0.008) or most (82%; p=0.071) visits occurring by home telemonitoring.ConclusionsUse of telemedicine may be an acceptable means to improve participation in clinical trials. This would need to be confirmed with the use of a larger-scale inquiry involving rural populations. Future research should assess subject or caregiver comfort and trainability with respect to computer-based technology in the home and systems barriers for wider implementation of telemedicine in neurology.
| S-EPMC3491628 | biostudies-literature
Project description:Although it has been well documented that poor health literacy is associated with limited participation in cancer clinical trials, studies assessing the relationships between cancer health literacy (CHL) and participation in research among diverse populations are lacking. In this study, we examined the relationship between CHL and willingness to participate in cancer research and/or donate bio-specimens (WPRDB) among African Americans, Latinos, and Whites. Participants completed the Cancer Health Literacy Test and the Multidimensional Cancer Literacy Questionnaire. Total-scale and subscale scores, frequencies, means, and distributions were computed. Analyses of variance, the Bonferroni procedure, and the Holm method were used to examine significant differences among groups. Cronbach's alphas estimated scales' internal consistency reliability. Significant interactions were found between race/ethnicity, gender, and CHL on WPRDB scales and subscale scores, even after education and age were taken into account. Our study confirms that CHL plays an important role that should be considered and researched further. The majority of participants were more willing to participate in non-invasive research studies (surveys, interviews, and training) or collection of bio-specimens (saliva, check cells, urine, and blood) and in studies led by their own healthcare providers, and local hospitals and universities. However, participants were less willing to participate in more-invasive studies requiring them to take medications, undergo medical procedures or donate skin/tissues. We conclude that addressing low levels of CHL and using community-based participatory approaches to address the lack of knowledge and trust about cancer research among diverse populations may increase not only their willingness to participate in research and donate bio-specimens, but may also have a positive effect on actual participation rates.
| S-EPMC6211072 | biostudies-literature
Project description:BackgroundParticipation rate is one of the main challenges medical researchers face. We examined how demographic background and trust in medical research affect the willingness of people to participate in medical research in Taiwan.MethodsData from the 2011 Taiwan Genomic Survey (a nationwide representative face-to-face survey) were analyzed. The survey included a vignette of a researcher conducting a clinical trial of an investigative medicinal product, and questions for interviewees regarding their willingness to participate in research after they were informed of the scenario description. A total of 3,159 people, aged 18 to 70 years, were sampled, and 1,538 of them completed the survey. With missing data excluded, a total of 1,389 respondents were included in the final analysis.ResultsAbout 12 percent of the respondents answered that they would be willing to participate in medical research. Respondents who had college degrees or above and were married or lived with significant others were less likely to participate in medical research. By contrast, male respondents, and respondents whose household family members had biomedicine-related degrees or had one themselves were more likely to participate in medical research. After adjustment for demographic factors, respondents were more likely to participate in medical research if: (1) they expressed trust in doctors conducting medical research; (2) they agreed that doctors would never ask them to join medical research studies that might harm them; (3) they thought that participating in a medical research study would be safe; and (4) they agreed that researchers had no selfish reasons for doing the medical research.DiscussionSome of our findings, such as the effects of education level and marital status on participation in medical research, are different from most findings of previous studies conducted in other countries. This study is useful for developing strategies to improve participant recruitment. Relevant discussions on research ethics and policies, such as the importance of public trust in medical researchers, could also be based on this study.
| S-EPMC5987748 | biostudies-literature