SA117 - ATTITUDE OF INDIAN RESEARCH PARTICIPANTS TOWARDS PRIVACY AND CONFIDENTIALITY.

The right to privacy—and the related professional duty of confidentiality—allows participants to limit others' access to information about themselves while still benefiting from healthcare or benefiting others in research. Like the right to give informed consent, the right to privacy and the confidentiality of health information promote well-being and protect autonomy or self-determination. This paper reports the first empirical study in India of the beliefs and expectations of patients/participants, their relatives, and IEC members regarding privacy/confidentiality. The first goal of this qualitative study was to evaluate how IEC/IRB members understand privacy-related obligations, how their institutions protect patient/participant privacy, as well as what IEC/IRB members believe patients/participants think. The second goal was to use thematic analysis to learn about the privacy-related views and values patients/participants hold. After informed consent, members of IEC/IRB (n=19) in New Delhi, patients or research participants (n=29) in a psychiatric clinical setting, and relatives accompanying those patients/participants (n=30) were interviewed based on interview guides. Interviews were transcribed, translated and thematic analyses were carried out. Data collection and analysis were integrated, with the interview guides being continually revised to explore newly emerging concepts and themes. Four themes were extracted: IEC/IRB members' understanding of privacy-related obligations, regulations, and guidelines; measures to protect patient and research participant privacy and barriers to their implementation; differences between IEC/IRB members' estimation of the value people placed on privacy protection and people's actual views. Analysis of semi-structured interviews revealed that IEC/IRB members sometimes underestimate the value patients/participants and relatives place on privacy protection. The recurrent themes identified in the study data indicate that it is mistaken to think that Indian patients and the public do not value privacy. Themes demonstrate that they make strategic choices about what sort of health information to share and with whom. [ABSTRACT FROM AUTHOR]