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

Abstract

Background: 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.

Objective: To study public knowledge and perceptions of clinical research.

Methods: 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.

Results: 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%).

Conclusions: 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.

Figure 1. India clinical trials (all types) registered in Clinicaltrials.gov (2002–2012); Compound Annual Growth Rate (CAGR).

Compound Annual Growth Rate (CAGR) was used for the periods 2005–2010 and 2010–2012 as follows: V(t₀) – start value; V(t_n) – end value; t_n – t₀ : number of years.

Figure 2. Industry and academic collaborations with non-Indian partners.

Figure 2a) Impact. Question: What is the impact on clinical research for collaborations with non-Indian INDUSTRY/ACADEMIA partners? Answers: Good – Bad – None – Not aware Figure 2b) Magnitude. Question: What is the impact on clinical research for collaborations with non-Indian INDUSTRY/ACADEMIA partners? The extent of the impact: large, moderate or minimal.