Fighting the stigma of mental disorders
Published 29 October 2014
"The treatment gap for epilepsy is huge and mainly due to ignorance and people’s embarrassment about going to the doctor with a mental disorder. If patients don’t go to the doctor all those resources we have remain untapped."
Neha Kinariwalla was working with an epilepsy research group in Oxford when she came up with what seemed like a simple idea for destigmatising the illness which affects 50 million people around the world, many of whom have no access to treatment due to embarrassment about mental disorders.
She decided to set up a website, called the Humanology Project, which would translate peer review research into something the general public would understand. Within a month of starting up the project she had 17 interns on board. Now she has developed a course which is part of the syllabus of three subjects at the US university she did her undergraduate degree at.
She has just arrived at Cambridge to do an MPhil with the support of a Gates Cambridge Scholarship, but she is continuing to work on the project which now includes a wide range of mental disorders and hopes to expand it across the US and to India.
From medicine to sociology
Neha’s background is in science, but she has long had an interest in the public perception of illness. Born on Long Island, she comes from a family of scientists - her mother is a microbiologist and her father a pharmacist - so she was fairly certain when she was at school that she would pursue a medical career. She was accepted onto Stony Brook College’s BSMD course straight from high school and majored in biomedical engineering.
However, she took a course in sociology as part of a requirement to broaden her education. It was to prove a turning point in her career. “I still remember learning about certain theories about how people’s circumstances affect their development. It changed my way of viewing the world. Previously I had had a very scientific outlook,” she says, although she admits that even at high school where she did scientific research, she was keen to find some part of science that “connected more with the real world”.
She decided she wanted to do something about perceptions of illnesses which were not heavily studied which could complement a medical approach. “I felt I could only help a more abstract group of people in the distant future through science whereas social science felt very connected with people and their personal narratives,” says Neha.
It was not until her final year that she switched to majoring in sociology. “I had been majoring in biology until then,” she says, “and then I suddenly had to load up with sociology. I went straight from organic chemistry to studying the historical development of social theory.”
During her four-year undergraduate degree, which she finished a year early, she did a lot of travelling. In her first summer through an internship with the Institute for the Conservation of Tropical Environments at Stony Brook, she spent five weeks in Madagascar on a biological anthropology project, studying the transmission of infectious disease in rural areas. “We looked at how things like not wearing proper footwear impacted the spread of disease,” she says. Neha wrote a paper on soil transmitted disease and sent it to other NGOs. Working with Soles4Souls she managed to get 253 pairs of shoes delivered to Madagascar.
The following winter and on two other occasions during her degree she went to India. Neha’s family is from Mumbai and she decided to volunteer at Gandhi’s Ashram in Gujarat. She ended up teaching a course on girls hygiene and health. She was in India in 2012 when the infamous gang rape incident occurred in Delhi. Because she had done martial arts she decided to teach girls self defence and describes this as a very rewarding experience as she felt so passionately about the issues affecting girls.
In her second year, Neha focused on epilepsy and particularly the public perception of it and in the summer vacation between her second and third year was invited to be the first undergraduate student to take part in the Oxford Epilepsy Research Group at the University of Oxford. There she studied the psychosocial effect of epilepsy and its impact on marriage. She had a lot of time to think and, since she was working on the public perception of epilepsy, it made sense to her that the public should know about all the research that was being done on the condition and that efforts should be made to destigmatise mental health issues.
Neha had been fascinated by epilepsy and neurological disorders from an early age after seeing people suffering from them. Some 80% of epilepsy sufferers are in developing countries. Two thirds of these get no proper treatment. “There was so much room for improvement and the medication is very cheap,” says Neha. “If it is dispensed correctly to the right people it could transform patients’ qualify of life. The treatment gap is huge and mainly due to ignorance and people’s embarrassment about going to the doctor with a mental disorder. If patients don’t go to the doctor all those resources we have remain untapped. It was an opportunity to do something practical with such a potential high impact was what drew me to this area.”
Neha came up with the idea for the Humanology Project in a week while she was at Oxford. It was a simple one - she would get her friends and others to write posts on a website translating peer review research on epilepsy and other mental disorders like depression and autism into something the public would understand. The posts would be sent to relevant professors to review and then put up on the website. The idea took off very quickly. The Women in Science and Engineering programme loved the idea and funded the website. They allowed their students to intern on the project in return for course credits.
The site was set up in July 2013 and by August Neha had 17 interns and was able to develop the project into a syllabus for Women in Science and Engineering, drawing on the expertise of the professors taking part. By the second semester both the writing department and sociology had come on board and were offering internships. The website also offers an opportunity for people who have the growing number of mental disorders it covers - from schizophrenia to eating disorders - to share their stories. “There’s an interdisciplinary and holistic aspect to it,” says Neha. “People are flattened in peer review articles. They are like numbers which further perpetuates their stigmatisation. We try to show the whole patient.”
Neha has plans to extend the project to India using interns who have a background in Indian culture. She hopes to translate it into Hindi and is collaboration with the All India Institute for Medical Sciences who she was in touch with during her three trips to India during her undergraduate years.
The rapidity with which the project has taken off - Neha has already done a TEDx talk on it and the site was getting around 7,000 hits a week from quite early on - has taken Neha by surprise. She had applied to Cambridge University in her third year as she wanted to work with an interdisciplinary team and get a more in-depth knowledge of sociology. She will do her MPhil in Modern Society and Global Transformations on the reproductive choices of people with epilepsy before returning to Stony Brook to do her medical training next year. Since she moved to Cambridge, she has had to hand over the day-to-day running of the Humanology Project to three other students, but is still very much working on the project while doing her MPhil.
She is writing a paper on the Project as a model for destimatising illness and is working on public health booklets with the Association for Improvements in the Maternity Services. She is also collaborating with Stony Brook journalism school’s Centre for Communicating Science and wants to get the programme included on the medical school syllabus. She would like to see medical students working on Wikipedia-style entries on the website to improve the quality of the posts. Neha hopes to have a framework soon that she can replicate at other universities.
“It has evolved organically a lot over a very short period,” she says. “I want to be sure of the framework we are offering so it has the most impact.”