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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.
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