title: 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.
authors.affiliation: Duke Global Proof-of-Concept Research Network, Duke Clinical Research Unit & Duke Clinical Research Institute, Duke University, Durham, North Carolina, United States of America. tal.burt@duke.edu
authors.forename: Tal
authors.initials: T
authors.lastname: Burt
authors.forename: Savita
authors.initials: S
authors.lastname: Dhillon
authors.forename: Pooja
authors.initials: P
authors.lastname: Sharma
authors.forename: Danish
authors.initials: D
authors.lastname: Khan
authors.forename: Deepa
authors.initials: D
authors.lastname: Mv
authors.forename: Sazid
authors.initials: S
authors.lastname: Alam
authors.forename: Sarika
authors.initials: S
authors.lastname: Jain
authors.forename: Bhavana
authors.initials: B
authors.lastname: Alapati
authors.forename: Sanjay
authors.initials: S
authors.lastname: Mittal
authors.forename: Padam
authors.initials: P
authors.lastname: Singh
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D035843:Biomedical Research; D005260:Female; D006801:Humans; D007194:India; D008297:Male; D008875:Middle Aged; D011639:Public Opinion; D011795:Surveys and Questionnaires; D055815:Young Adult