April 25, 2018 | Written by: Betul Selcen Ozer
Categorized: IBM Impact Grants
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Autism, currently known as Autism Spectrum Disorder (ASD), is a lifelong neuropsychiatric disorder that starts before three years of age. ASD can be detected in children when they are about 18 months old. Early intervention on children identified before age 2 notably improves prognosis. The participation of the health system in order to early diagnose is highly important and leads to significant improvements in the quality of life of children with autism and their families.
IBM conducted a Design Thinking workshop to help Tohum develop its new autism screening model
Since 2003, the Tohum Autism Foundation has reached out to more than 250,000 autism diagnosed children and families with various activities such as training materials and advocacy programs. One current foundation project is a “Developing Screening, Diagnosis and Education Model” which aims to affect early diagnosis of children at autism risks, and increase the quality of special education for children with special needs. The program targets three main stakeholders: healthcare professionals, education professionals and families.
The project has been delivered with the partnership of Istanbul Provincial Directorate of National Education, Istanbul Public Health Directorate and Istanbul Metropolitan Municipality and financial support by Istanbul Development Agency. The goal is to develop an autism risk screening model for the Ministry of Health for integration into existing patient tracking systems used by family practitioners. This model will be the basis for early detection of autism risk, and offers a complete tracking system from family practitioners to use in reporting to the health board.
Ten thousand children between 18-36 months who come to family health centers have been screened. An IBM “Leading with Data” Impact Grant enabled the creation of the roadmap to develop this model. The Impact Grant supported gathering current data about screening phase of the project, analysis of the data and developing a road map.
Support from IBM enabled us to reach significant results, particularly about the first and second phases of screening. We also got an opportunity to identify specific problems that family practitioners experienced. For example, data analysis revealed that family practitioners spend more time completing patient demographic information than completing the Modified Checklist for Autism in Toddlers (M CHAT). In addition, we learned that having the ability to retrieve demographic information from the existing patient tracking system would enable family practitioners to concentrate on identifying autism symptoms. We also discovered that families have an urgent need to assess their child’s autism risk early. In response, we designed (with IBM’s assistance) a mobile application that families can use to assess whether a child may have a developmental disability.
IBM’s support has been essential to our efforts to gain insights into community needs and develop tools for the screening and early diagnosis of children at autism risk. The IBM Impact Grant helped us increase our institutional capacity to offer these vital services.
Betül Selcen Özer is General Manager of TOHUM Autism Foundation.