Patients' attitudes and preceptions regrding research and their rights: a pilot survey study from the Middle East

Abstract

Attitudes et perceptions des patients à l'égard de la recherche et de leurs droits : étude pilote au Moyen-Orient RESUME La surveillance éthique et réglementaire de la recherche peut ne pas être optimale dans les pays à revenu faible et intermédiaire. Afin de déterminer les attitudes et les perceptions des patients à l'égard de la participation à la recherche et des perceptions de leurs droits, nous avons recruté 202 participants dans des hôpitaux en Arabie saoudite, en Égypte, au Liban et au Soudan, et leur avons demandé de compléter un questionnaire évaluant leurs attitudes et perceptions à ce sujet. Environ 20 % croyaient qu'il arrivait que des médecins mènent des recherches sur des patients sans leur consentement, et 35 % pensaient que si les participants se retiraient du processus de recherche, ils ne bénéficieraient pas de soins médicaux de qualité. Plus de 85 % pensaient qu'ils devaient avoir droit à la confidentialité de leurs données, à des soins médicaux gratuits en cas d'incident durant la recherche et qu'ils devaient pouvoir poser des questions. Près de la moitié étaient d'avis qu'ils avaient le droit de se retirer de la recherche sans être pénalisés, et environ 75 % pensaient qu'ils pouvaient adresser des plaintes sans craindre de subir des préjudices. Les participants illettrés ou sans emploi étaient moins susceptibles d'évaluer leurs droits que les autres participants. To determine patients' attitudes and perceptions toward research participation and perceptions of their rights, we recruited 202 participants from hospitals in Egypt, Lebanon, Saudi Arabia and Sudan and asked them to complete a questionnaire assessing attitudes and perceptions. Around 20% believed that doctors sometimes perform research on patients without their knowledge and 35% believed that if participants withdrew from the research they would not receive good medical care. Over 85% believed that they should have rights regarding confidentiality of data, free medical care if injured during the research and asking questions. Almost half believed they have a right to withdraw without penalty and around 75% believed they could make complaints without fear of harm. Those who were illiterate or unemployed were less likely to appreciate their rights compared with their counterparts. ‫األوسط‬ ‫الرشق‬ ‫من‬ ‫جتريبية‬

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

“…[11,16,24] They were mainly resistant to participating in drug trials, including invasive procedures such as tissue biopsy. [11,14,23,24,31,32] This was opposed by study findings that reported a high proportion of patients considered participation in trials involving repeat biopsies. However, the study included patients with gastrointestinal malignancies or lymphoma only, and their views on biopsies may differ from other patients.…”

“…This might come in the shape of accessing hospital care or costly drugs that are more effective than the available treatments, drugs of fewer side effects or otherwise unavailable, as well as receiving better treatment or more attention from healthcare providers. [ 15 , 17 , 21 – 23 , 27 , 28 , 31 , 33 ] In addition to that, participation was motivated by having financial gains, expressing their opinions, sharing their complaints, or getting to learn about the scientific topic being researched. [ 14 , 20 , 21 , 23 , 25 , 28 , 30 , 31 , 33 ] Moreover, few of these studies showed that patients are often motivated to participate in research if they knew in advance that they would have access or receive feedback on their test results.…”

“…[ 15 , 17 , 21 – 23 , 27 , 28 , 31 , 33 ] In addition to that, participation was motivated by having financial gains, expressing their opinions, sharing their complaints, or getting to learn about the scientific topic being researched. [ 14 , 20 , 21 , 23 , 25 , 28 , 30 , 31 , 33 ] Moreover, few of these studies showed that patients are often motivated to participate in research if they knew in advance that they would have access or receive feedback on their test results. [ 12 , 16 , 27 ] One study that aimed to assess participation in HIV/HCV cohort studies among people who inject drugs, few participants expressed that among the motivators to be enrolled in the protection from drug-related police interventions during the study period.…”

“…This is driven by a sense of duty and commitment to the country, community, and volunteerism. [14,20,21,23–28,33] Furthermore, the desire to contribute to knowledge and scientific advancement was another driving factor. [14,15,19,21,24,26–28,30]…”

“…[ 11 , 16 , 24 ] They were mainly resistant to participating in drug trials, including invasive procedures such as tissue biopsy. [ 11 , 14 , 23 , 24 , 31 , 32 ]…”