Kokoro - One Part Science, One Part Heart
One of my favourite bookshops, Wayward & Wise in Mumbai was falling prey to the pandemic with drastically reduced footfall last year. I made a trip to the shop last week because it is the one place I discover all the old fringe books that never make it to any bestseller lists but are still fantastic reads. One such book that I picked up was “Madness & Civilization” by 20th century French philosopher Michel Foucault, a tiresome but illuminating read. The blurb begins with the question, “What does it mean to be mad?” It questions the arbitrariness of boundaries between what is considered sane, and what is insane, what is normal and what not so? Herein lie historically the roots of the stigmatization of mental illness.
In one of those conversations which would have happened over a late night smoke break (if either Laina or I were smokers but we are not), we began discussing what success would look like for BrainSightAI. I asked her what she would consider a fair outcome for all these nights of toil toward building AI enabled products that advance the field of neuroscience, this journey that can sometimes feel overwhelming. Her answer was stunning and simple, she said “I would have succeeded if I positively impacted 100,000 lives”. I asked her then what she thought was the challenge to new product adoption in the field of mental wellness? She strongly held that de-stigmatization of the illness itself was the gravest challenge before us. All the technological excellence built into our products would amount to nought unless we could talk about mental illness without “othering” patients. Toward this, we both agreed, society lacked courage and conversation to bring forth the lived experiences of patients, caregivers and medical health practitioners, people who engage with mental illness on a daily basis.
Kokoro started out as Project Kokoro, a dipping of toes in the vast unknown of bringing together the scientific approach with the social experience of navigating psychiatric conditions. Our premise was simple - how can we create a space of reciprocal learning, where we empower patients and caregivers with information and knowledge about the condition. At the same time we listen, share and understand the very real challenges and experiences of managing medication, routines and society as a patient and as a caregiver.
The Kokoro program is pedagogically designed as a series of sessions spread over a few weeks. Each edition of Kokoro has, at its heart, a set of carefully designed learning outcomes which guide the curriculum content creation. We are fanatic about the sensitivity required to design, produce and disseminate this content. Each module is discussed and reviewed with subject matter experts, doctors and with patients where possible to ensure relevancy and sufficiency of the content. Designed as a set of alternating information and discussion sessions, the program ensures all participants find more than a fistful of knowledge every week, with time to reflect, discuss and share what they are learning. There are also opportunities to co-create content with the BrainSightAI team. Vaijeyanthi, a participant in Kokoro 1.0 shared her article about the importance of sleep with our team that we were thrilled to feature on our blog. Participants also become engaged advisors as we iterate over our products and applications.
As an outcome from the program, we expect the participants would emerge with knowledge about the prognosis and latest research around neuro-psychiatric conditions that help them have more informed conversations with their medical practitioners. We also expect participants to find a shared sense of community with the other participants which must bring them relief in what can sometimes feel like an uphill and lonely journey. For the BrainSightAI team, first and foremost these sessions help us find a common platform with the very constituencies we seek to serve through our products. It is an immensely grounding experience and it reminds us of why the work we do is important. The renewed commitment to product development aside, Kokoro for us collapses the walls between science and society. Kokoro is an ongoing effort, one that exists for and because of mental health patients and evangelists. It has the potential to debias our conversations, lift the fog around mental illness and make it easier for patients to seek and get the help they need.
If you are a caregiver to someone with Dementia, our next Kokoro course is for you. You can sign up here. Please feel free to share this link with someone you think can benefit from it.