Public awareness and perception of clinical trials: Quantitative study in Pune

Abstract

Context:Studies have reported that clinical research has experienced tremendous growth during past few decades with many multinational pharmaceutical companies recruiting millions of Indians in clinical trials (CTs). However, there is hardly any literature that talks about the participants, their knowledge, and awareness of CTs. It is important that the general public is aware about CTs so that they can take their own informed decision to participate in CTs.Aim:To assess public awareness, perceptions, and attitudes toward CTs and their views on various methods to create awareness about CTs.Materials and Methods:Cross sectional survey was conducted with 200 non trial participants (NTPs) and 40 trial participants (TPs).Results:TPs were significantly (P < 0.0001) older than NTPs. More than 80% of both TPs and NTPs mentioned participation in CT helps advance medical science and strongly felt that there is a need to create awareness about CTs. Nearly 70% of TPs could not remember the phase of the trial while 20% did not know which type of trial they had participated. The main reason for participation in the trial was physician's advice. About 80% of both TPs and NTPs felt that participation in CT will increase with free medications and advice from friends/relatives who had good experience with trial.Conclusion:Results of this pilot study revealed need to create CT awareness among the general public. However, considering ethno-cultural, regional, and literacy-level differences throughout the country, a nationwide study would be appropriate to provide reliable results about awareness of CTs among Indians.

Attitude of Asian Parkinson Patients towards Clinical Research and Tissue Donation

“…As researchers are faced with the problem of patient participation in research globally, understanding the barriers limiting patients' interests in research is important in designing future research projects that ensure participant satisfaction and recruitment. While extensive work has been done to evaluate Western patients' perspectives, there have been only few studies representing Asian patients' attitude towards research participation, which could be due to lack of patient or physician interest as well as limited funding and infrastructure to promote research [8,9], while various Asian studies have been performed to assess attitudes of healthy subjects or mixed group of patients towards research participation [2,6,[10][11][12][13][14]; to the best of our knowledge, this is the first Asian study on Parkinson patients to understand their attitudes towards clinical research and tissue donation.…”

“…Often cited reasons for not participating in research studies include (1) inconvenience and discomfort, (2) lack of trust on trial medicines, treating doctors, or hospital facilities, (3) lack of information about research, (4) family's refusal to allow participation, and (5) uncertainty or fear of the unknown [4,5]. Asian countries such as Oman, Saudi Arabia, and India showed interest rates of 59%, 30%, and 46%, respectively, for participation in clinical research [1,2,6]. A comprehensive review by Wai et al has summarized the findings of 18 different studies that evaluated experiences of patients regarding their prior research participation and the influence of that on consenting to reuse of leftover tissues for future research.…”

Clinical Trials Perception in Rheumatology Patients: Experience from a Single Rheumatology Tertiary Center

“…An Indian study published in 2013 revealed that physician advice and access to free medication along with family advice were the main reasons for taking part in a clinical trial, but otherwise the knowledge about clinical research lacked with 20% of patients unable to remember the study they took part in (20). A huge proportion of patients from Kenya relies on their clinician advice as well, and tend to not scrutinise trial details when agreeing to participate in clinical trials according to Naanyu et al, 2014 (21) .…”

Public awareness and perception of clinical trials in Montenegro

“…Th e importance of awareness of the general public about CTs is so that they can decide whether they want to participate in them or not [3]. Positive example of this awareness is that information obtained through clinical trials has helped raise the cure rate for pediatric cancers to more than 70% overall, with some childhood malignancies achieving more than 90% cure rates [4].…”