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  • Kriti Jain

Kokoro- Building Citizen Scientists

Kokoro is an initiative that is very close to my heart. One of the main reasons for this is because of the way the course has been envisioned and designed - with empathy, respect, and the willingness to make an impact.

One term we often use to describe Kokoro is “citizen science”. As you may have inferred from the name, this approach entails a close engagement between the citizen (the general public) and scientific research. The idea is to make the citizen an active participant, rather than a passive recipient, of the science that has a direct impact on their lives. Active participation can take on many different forms, from simply spreading awareness to direct involvement in research studies. Through Kokoro, we have taken on the challenge of transforming patients, caregivers, and allies of neuropsychiatric disorders into citizen scientists. Our approach can be categorized in three ways: psychoeducation, empowerment, and, as Ravneet wonderfully described it, reciprocal learning.

Through psychoeducation, we want Kokorians to develop the knowledge and skills required to improve their mental health. Three questions guide our curriculum design. First, what does the patient/caregiver need to know in order to have a better quality of life? We find that simply understanding the reasons behind one’s experiences can be very impactful. For instance, in our 1st iteration of Kokoro for Depression and Anxiety, we found that the cohort really benefited from knowing the biological mechanisms underlying the disorders. Our second guiding question is, what does the patient/caregiver need to do in order to have a better quality of life? While our program is not designed to replace psychotherapy or other psychological interventions, we aim to make these resources more accessible to those who would benefit from them. Finally, what does the patient/caregiver need to feel in order to have a better quality of life? This is arguably the most important question, pushing us to think of ways to tackle difficult issues such as mental health stigma.

But how does this psychoeducation promote citizen science? In addition to just being recipients of psychoeducation, we want Kokorians to become psychoeducators. This means that the chain of knowledge doesn’t end, but rather starts with Kokoro. Using a combination of didactic and dialectic pedagogy, we want our instructors to not only impart knowledge, but also help Kokorians think critically and independently.

This brings us to our second goal, empowerment. Given its technical nature, scientific research is not accessible to the main stakeholders of neuropsychiatric disorders- patients and caregivers. We want to change that. Through Kokoro, we want to make these stakeholders aware of the research being done in the relevant fields, what significance it has to our understanding of these disorders, and, lastly, how they can contribute to it. Gaining such information can empower patients and caregivers to make informed decisions about whether they would like to participate in scientific research, and if yes, how they can do so.

And finally, reciprocal learning. This is the idea that a Kokorian is both a student and a teacher. As a research-driven company in the (mental)healthcare space, it is important for us to know what the patients and caregivers need from both a scientific and product perspective. Through our citizen science initiative we are creating a space where Kokorians can effectively communicate and express their lived experiences, helping us learn and inform our product and research design.

If you are a caregiver to someone with Dementia sign-up for our upcoming Kokoro from Feb 21- Mar 20, 2021. Kokoro is a free 5 week program that requires participants to commit 2 hours per week.

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