Dataset Information

PARTAKE survey of public knowledge and perceptions of clinical research in India.

ABSTRACT: A public that is an informed partner in clinical research is important for ethical, methodological, and operational reasons. There are indications that the public is unaware or misinformed, and not sufficiently engaged in clinical research but studies on the topic are lacking. PARTAKE - Public Awareness of Research for Therapeutic Advancements through Knowledge and Empowerment is a program aimed at increasing public awareness and partnership in clinical research. The PARTAKE Survey is a component of the program.To study public knowledge and perceptions of clinical research.A 40-item questionnaire combining multiple-choice and open-ended questions was administered to 175 English- or Hindi-speaking individuals in 8 public locations representing various socioeconomic strata in New Delhi, India.Interviewees were 18-84 old (mean: 39.6, SD ± 16.6), 23.6% female, 68.6% employed, 7.3% illiterate, 26.3% had heard of research, 2.9% had participated and 58.9% expressed willingness to participate in clinical research. The following perceptions were reported (% true/% false/% not aware): 'research benefits society' (94.1%/3.5%/2.3%), 'the government protects against unethical clinical research' (56.7%/26.3%/16.9%), 'research hospitals provide better care' (67.2%/8.7%/23.9%), 'confidentiality is adequately protected' (54.1%/12.3%/33.5%), 'participation in research is voluntary' (85.3%/5.8%/8.7%); 'participants treated like 'guinea pigs'' (20.7%/53.2%/26.0%), and 'compensation for participation is adequate' (24.7%/12.9%/62.3%).Results suggest the Indian public is aware of some key features of clinical research (e.g., purpose, value, voluntary nature of participation), and supports clinical research in general but is unaware of other key features (e.g., compensation, confidentiality, protection of human participants) and exhibits some distrust in the conduct and reporting of clinical trials. Larger, cross-cultural surveys are required to inform educational programs addressing these issues.

SUBMITTER: Burt T

PROVIDER: S-EPMC3713007 | biostudies-literature | 2013

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

PARTAKE survey of public knowledge and perceptions of clinical research in India.

Burt Tal T Dhillon Savita S Sharma Pooja P Khan Danish D Mv Deepa D Alam Sazid S Jain Sarika S Alapati Bhavana B Mittal Sanjay S Singh Padam P

PloS one 20130716 7

<h4>Background</h4>A public that is an informed partner in clinical research is important for ethical, methodological, and operational reasons. There are indications that the public is unaware or misinformed, and not sufficiently engaged in clinical research but studies on the topic are lacking. PARTAKE - Public Awareness of Research for Therapeutic Advancements through Knowledge and Empowerment is a program aimed at increasing public awareness and partnership in clinical research. The PARTAKE S ...[more]

PMID: 23874712

Similar Datasets

Project description:BACKGROUND:Addressing Citizen's perspectives on homelessness is crucial for the design of effective and durable policy responses, and available research in Europe is not yet substantive. We aim to explore citizens' opinions about homelessness and to explain the differences in attitudes within the general population of eight European countries: France, Ireland, Italy, the Netherlands, Poland, Portugal, Spain, and Sweden. METHODS:A nationally representative telephone survey of European citizens was conducted in 2017. Three domains were investigated: Knowledge, Attitudes, and Practices about homelessness. Based on a multiple correspondence analysis (MCA), a generalized linear model for clustered and weighted samples was used to probe the associations between groups with opposing attitudes. RESULTS:Response rates ranged from 30.4% to 33.5% (N = 5,295). Most respondents (57%) had poor knowledge about homelessness. Respondents who thought the government spent too much on homelessness, people who are homeless should be responsible for housing, people remain homeless by choice, or homelessness keeps capabilities/empowerment intact (regarding meals, family contact, and access to work) clustered together (negative attitudes, 30%). Respondents who were willing to pay taxes, welcomed a shelter, or acknowledged people who are homeless may lack some capabilities (i.e. agreed on discrimination in hiring) made another cluster (positive attitudes, 58%). Respondents living in semi-urban or urban areas (ORs 1.33 and 1.34) and those engaged in practices to support people who are homeless (ORs > 1.4; p<0.005) were more likely to report positive attitudes, whereas those from France and Poland (p<0.001) were less likely to report positive attitudes. CONCLUSION:The majority of European citizens hold positive attitudes towards people who are homeless, however there remain significant differences between and within countries. Although it is clear that there is strong support for increased government action and more effective solutions for Europe's growing homelessness crisis, there also remain public opinion barriers rooted in enduring negative perceptions.

Project description:Few studies have attempted to determine the proportion of Canadian hospital pharmacists involved in clinical research, despite a general consensus that research should be an essential component of a pharmacist's professional role.The primary objective was to characterize the involvement in clinical pharmacy research of hospital pharmacists in the 4 health authorities of the Lower Mainland of British Columbia (collectively known as the Lower Mainland Pharmacy Services). The secondary objective was to identify perceived barriers to conducting research.Pharmacists employed within Lower Mainland Pharmacy Services were invited to participate in an online cross-sectional survey, for completion in August and September 2015. Descriptive statistics were used to analyze the results. Groups of survey participants were compared to examine differences in measured outcomes.A total of 534 pharmacists were surveyed, with a response rate of 16% (85/534). Overall, 77% (55/71) of the respondents reported having participated in research, and 87% (62/71) expressed interest in conducting future research. Chart reviews (78%, 36/46) and surveys (41%, 19/46) were the most common study designs used in prior research. Participants self-identified their research-related strengths as literature evaluation (46%, 27/59) and hypothesis generation (44%, 26/59). Conversely, 81% (48/59) of respondents self-identified statistical analysis as a weakness. Most respondents stated that personal satisfaction (82%, 49/60) and the opportunity to learn about disease states (78%, 47/60) were the driving factors for conducting research. The most commonly cited barrier to conducting research was lack of time (92%, 55/60). Opportunities to join existing teams (73%, 44/60) and mentorship programs (70%, 42/60) were identified as the most popular arrangements for encouraging future research.Most of the pharmacists who responded to this survey reported having participated in clinical pharmacy research, but a lack of dedicated time appears to be a major hurdle to greater research participation. A targeted program increasing exposure to existing research teams and mentorship opportunities is recommended for promoting future research.

Project description:ObjectivesThis study explored self-reported knowledge and interest to learn more about medicines research, development and health technology assessment among Finnish general public. It also aimed to define possible knowledge gaps and needs for public education regarding these topics.DesignOnline survey with 503 participants. The questionnaire was originally developed as a part of the Needs Assessment Work Package of the European Patients' Academy on Therapeutic Innovation Project. The survey was carried out in Finland in 2019.MethodsThe survey was conducted as an online survey by Kantar TNS Gallup Forum online panel. The data were analysed by using the freely available programming language R. Relationships between the demographic characteristics (such as age, gender and education level) of respondents and their knowledge or interest in medicines research and development were determined using Pearson's χ2 tests. Statistically significant responses of demographic characteristics in the respondents' knowledge or interest in medicines research were determined by logistic regression.ResultsOf the 503 respondents (age 16-64) only 12% reported having good or very good knowledge of medicines research and development in general. Regarding health technology assessment, pharmacoeconomics and regulation, the percentage of respondents reporting good or very good knowledge was as low as 8%. Respondents were most interested in learning more about predictive and personalised medicine (47%) and least interested in medicines regulation (30%) and pharmacoeconomics (31%).ConclusionsSelf-reported knowledge about medicines research and development and health technology assessment appears to be very low in Finland. Patient and public participation is recognised as an important and essential element in up-to-date medical research and assessment of new treatments. In order to participate as an active and equal partner in these processes, the public needs more information and education in these topics.

Project description:BackgroundCore outcome sets (COS) are standardised sets of outcomes, which represent the minimum outcomes that should be measured and reported in clinical trials. COS can enhance comparability across health trials by reducing heterogeneity of outcome measurement and reporting and potentially minimising selective outcome reporting. Examining what researchers involved in trials know and think about COS is essential to increase awareness and promote COS uptake. The aim of this study is therefore to examine clinical trialists' knowledge, perceptions and experiences of COS.MethodsAn online survey design was used. Participants were clinical trialists, operationalised for the current study as researchers named as the contact person on a trial registered on the International Standard Randomised Controlled Trial Number (ISRCTN) Trial repository between 1 January 2019 and 21 July 2020. Survey items assessed clinical trialists' familiarity with and understanding of COS, along with experiences of COS use and development.ResultsOf 1913 clinical trialists contacted to participate, 62 (3%) completed the survey. Forty (65%) participants were familiar with COS and, of those familiar with COS, 21 (55%) had been involved in a trial that used a COS. Of clinical trialists who used COS in a trial(s), less than half (n = 9, 41%) reported that all COS outcomes were used. The main barriers to using COS are poor knowledge about COS (n = 43, 69%) and difficulties identifying relevant COS (n = 42, 68%). Clinical trialists also reported perceptions of COS as restrictive and often containing too many outcomes. The main enablers to using COS are clear understanding (n = 51, 82%) and perceived importance of COS (n = 44, 71%).ConclusionsEnhancing clinical trialists' use of all COS outcomes is needed to reduce outcome heterogeneity and enhance comparability across trial findings. Enhancing awareness of COS importance among researchers and funders is needed to ensure that COS are developed and used by clinical trialists. Education and training may further promote awareness and understanding of COS.

Dataset Information

PARTAKE survey of public knowledge and perceptions of clinical research in India.

Publications

PARTAKE survey of public knowledge and perceptions of clinical research in India.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets