Patients’ perspectives on participation in clinical trials and subsequent ethical challenges in a hospital setting in Jordan

Gharaibeh, Lobna; Sartawi, Hanan; Alzoubi, Karem H.; Juma, Tareq; Ayyad, Diana; Sartawi, Samah

doi:10.1007/s11096-019-00959-4

Cited by 4 publications

(24 citation statements)

References 29 publications

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“…In our survey, vaccine trials appeared more appealing for participant enrollment than treatment-related trials (17.5% vs. 15%). The mentioned percentage is lower than the percentage reported from previous surveys conducted to assess people's agreement to participate in any clinical trial in the MENA region ( Al-Rawashdeh et al, 2019 , Altaf et al, 2019 , Gharaibeh et al, 2020 ; Lawati et al.,2018; Nasef et al.,2014 ). A public survey conducted in Saudi Arabia demonstrated that 26.9% of the participants were willing to participate in clinical trials ( Al-Rawashdeh et al,2019 ).…”

Section: Discussioncontrasting

confidence: 57%

“…To our knowledge, there is a scarcity of data pertaining to knowledge, attitude, and perception towards participation in clinical trials among the public from this region. A lot of published literature report data from the healthcare settings in the region ( Al-Dakhil et al, 2016 , Altaf et al, 2019 , Gharaibeh et al, 2020 ; Lawati et al,2018; Nasef et al.,2014 ). This study highlighted that only 15 to 17.5% of the surveyed people were willing to participate in COVID-19 clinical trials.…”

Section: Discussionmentioning

confidence: 99%

“…A public survey conducted in Saudi Arabia demonstrated that 26.9% of the participants were willing to participate in clinical trials ( Al-Rawashdeh et al,2019 ). In previous surveys conducted in healthcare settings, the willingness to participate in clinical trials ranged from 27.5 to 53.2 % between patients or their relatives ( Altaf et al, 2019 , Gharaibeh et al, 2020 ; Lawati et al.,2018; Nasef et al.,2014 ). An important aspect to consider when interpreting the low enrollment results from our study is the presence of rumors and smear campaigns surrounding the vaccines and treatment related to COVID-19 that would not have been in the case of previous studies.…”

Section: Discussionmentioning

confidence: 99%

“…As reported in the literature from the MENA region, the main reasons for participation in clinical trials are to offer help to others, providing access to medical care, religious beliefs, and altruism. The main objections to participation in clinical trials reported from the MENA region are fear of adverse effects of the new intervention, absence of financial compensation, and time constraints ( Al-Dakhil et al, 2016 , Gharaibeh et al, 2020 ; Tohid et al.,2017).…”

Section: Discussionmentioning

confidence: 99%

“…This study survey was designed after adopting published surveys on this topic from Jordan and Korea. (Choi YJ, et al,2016; Gharaibeh et al.,2020 ). The survey was composed of five sections written in Arabic and English language namely: Agreement to participate in the survey anonymously.…”

Section: Methodsmentioning

confidence: 99%

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Knowledge, attitude, and perception of public about participation in COVID-19 clinical trials: A study from Egypt and Saudi Arabia

Elshammaa

Hamza²,

Elkholy

et al. 2022

Saudi Pharmaceutical Journal

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Background Pharmaceutical firms are striving to find potential treatments to prevent and treat COVID-19. One of the gold standards to evaluate treatment is a clinical trial; however, the difficulty in patient recruitment could act as a determinant. It is evident from the registry data that very few studies have been conducted involving the population of the Middle East and North Africa (MENA) region. Aim To document knowledge, perception, and attitude of the public from Two large countries in the MENA region (Egypt and Saudi Arabia) towards participation in clinical trials focused on evaluating potential COVID-19 treatments. Method A cross-sectional study was conducted that used a snowball sampling strategy for recruitment. General population 18 years old or older, who lived in Saudi Arabia or Egypt were invited. The survey was adopted from literature and was approved by an ethics committee. Results Out of 800 participants in the survey, 407 participants were from Egypt, and 393 were from Saudi Arabia. Most participants (48%) had moderate knowledge, i.e., > 60% < 80%. The results revealed poor attitude (88.5%) and poor perceptions (45.8%) regarding participation in COVID-19 clinical trials. Education and residence were identified as determinants of participants’ knowledge, attitude, and perceptions. Participants' knowledge and understanding of COVID-19 trials did not impact their willingness to participate. This coupled with a poor attitude and perception among the masses drastically affects any potential for participation in future clinical trials. Conclusion: A relatively small proportion of participants were interested in enrolling in COVID-19 studies. Increased collective engagement through social media and healthcare professionals can help improve attitudes and perceptions toward trial participation.

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Section: Discussioncontrasting

confidence: 57%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

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Knowledge, attitude, and perception of public about participation in COVID-19 clinical trials: A study from Egypt and Saudi Arabia

Elshammaa

Hamza²,

Elkholy

et al. 2022

Saudi Pharmaceutical Journal

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Perceptions and attitudes toward participation in clinical research in the Eastern Mediterranean Region: A systematic review

et al. 2022

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Introduction: Successful recruitment of participants into clinical research has always been challenging and is affected by many factors. This systematic review aimed to explore the perceptions and attitudes as well as identify the factors affecting the participation in clinical research among the Eastern Mediterranean Regional Office countries’ population. Methods: A systematic search of the literature was conducted to explore attitudes or perceptions of the general public or patients towards participation in clinical research. PubMed, Pro-Quest Central, World Health Organizations Index Medicus for the Eastern Mediterranean Region, and Google Scholar were searched. Studies were considered eligible for inclusion if they presented primary data and were conducted in one of the Eastern Mediterranean Regional Office countries. A data extraction sheet was used to record the following: year, country, aim, population, sample size, study design, data collection, and setting. The identified factors from the included studies were categorized into motivators and barriers. Results: In total, 23 original research articles were identified that addressed perceptions or attitudes towards clinical research participation. Six main motivators and barriers of research participation among patients, the general public, and patient family members were identified. The most common cited motivators included personal benefits to the individual, altruism and the desire to help others, the research process, the influence of the physician, family encouragement, and religion. Concerns regarding safety, confidentiality, and other factors in addition to the research process, lack of trust in healthcare providers or healthcare system, lack of interest in research and no perceived personal benefit, religious concerns, and family/cultural concerns were the most cited barriers to participation. Conclusion: The identified motivators and barriers are essential to tackle during clinical research planning among the population of Eastern Mediterranean Regional Office countries. Further research is needed to assess the attitudes and perceptions of individuals approached to participate in trials.

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Biobanks in the low- and middle-income countries of the Arab Middle East region: challenges, ethical issues, and governance arrangements—a qualitative study involving biobank managers

et al. 2022

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Background Biobanks have recently been established in several low- and middle-income countries (LMICs) in the Arab region of the Middle East. We aimed to explore the views of biobank managers regarding the challenges, ethical issues, and governance arrangements of their biobanks. Methods In-depth semi-structured qualitative interviews were conducted with a purposive sample of eight biobank managers from Egypt (6), Jordan (1), and Sudan (1). Interviews were performed either face-to-face, by phone, or via Zoom and lasted approximately 45–75 min. After verbal consent, interviews were recorded and then transcribed. The authors performed a thematic analysis of the transcripts independently and then integrated the themes via a consensus process. Results Biobank managers discussed the main challenges in establishing their biobanks. These included the staff’s lack of experience and training, limited funds, deficit awareness of biobanks, obtaining funding from different sources. Only four reported they were active in distributing biospecimens and health data to researchers. Six biobanks used a broad consent model, one used tiered consent, and another allowed participants to opt-out of being recontacted. Five managers avoided partnerships with pharmaceutical companies due to concerns with unfavorable reactions from the community. Five managers did not have clear policies for returning research results to the donors. Five expressed challenges with sample and data sharing with international collaborators; all five used material transfer agreements. The biobank managers revealed variable governance arrangements and activities with community involving awareness and educational efforts rather than active engagement. Several expressed the importance of transparency with the operations of their biobanks and gaining the trust of their stakeholders. Conclusion Managers of biobanks in LMICs in the Arab Middle East encounter financial, operational, and social challenges toward their sustainability efforts. Discussions with key stakeholders are warranted to manage ethical issues involving informed consent, privacy, data sharing, and the return of results. We recommend that biobank managers in the Arab Middle East form collaborative networks within the region and internationally, develop trusting governance relationships with their stakeholders, and pursue engagement activities with their communities to enhance trust.

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Patients’ perspectives on participation in clinical trials and subsequent ethical challenges in a hospital setting in Jordan

Cited by 4 publications

References 29 publications

Knowledge, attitude, and perception of public about participation in COVID-19 clinical trials: A study from Egypt and Saudi Arabia

Knowledge, attitude, and perception of public about participation in COVID-19 clinical trials: A study from Egypt and Saudi Arabia

Perceptions and attitudes toward participation in clinical research in the Eastern Mediterranean Region: A systematic review

Biobanks in the low- and middle-income countries of the Arab Middle East region: challenges, ethical issues, and governance arrangements—a qualitative study involving biobank managers

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