In this post, we hear from Max Yaghchi, Writer. Max is a PharmD candidate volunteering with the Innovation Hub.
In September and early October, the Innovation Hub team was trained in participant interviewing, interview transcription, and participant de-identification. We want to generate data that will help us improve the student experience, while protecting participants from potential repercussions due to their involvement. This can be challenging when participants belong to small and unique groups on campus, or when individual de-identification still exposes the group as a whole to exploitation from third parties. For example, information on student experience and student needs may be used by private institutions for tailored product and service marketing. To prevent this, we must ensure that we conduct our interviews with empathy and remain vigilant for ulterior uses of our findings.
As a healthcare student, I was introduced very early on to this tension between information being used to benefit people and being exploited as a tool. To handle this tension, I was trained to treat patient information as if it were my own and to take every precaution necessary to protect it. In the healthcare setting, unauthorized access to health information by private drug providers and employers can detrimentally affect vulnerable people. By developing an empathetic connection with my patients, I became more aware of their vulnerabilities and more diligent in protecting their privacy. Empathy is also one of the cornerstones of the Innovation Hub, and by committing to empathy, we can better understand the vulnerabilities of our participants. This awareness allows us to improve student experience while ensuring participant confidentiality. Furthermore, by establishing this empathy-based rapport with our participants, coupled with an informed consent process, interviewers invite participants to share more intimate details of their experience, to the extent that they feel comfortable.
To ensure that we use our findings in collaborative and beneficial ways, we need to reflect on the groups we work with. What can the organizations who know about our work do with the data we generate? Because many of us on the Innovation Hub belong to the same groups as our participants, we can bring a personal perspective to this reflection and thus improve awareness of vulnerabilities. In a further step, we can also use community-based research to understand institutional exploitation that groups outside of our own have faced historically. By learning from these lessons, we can fully commit ourselves to protecting our participants while enhancing their experience.
As we agreed during our sessions, de-identification is both an art and a science. We want to present contextualized information while protecting both individuals and groups. The Innovation Hub is dedicated to undertaking this challenge and ensuring that the information we generate is handled responsibly and with the intent of directly benefiting our participants.