We know that data has the power to persuade hearts and minds. Accurate information about MS can highlight key areas of need, inform policy, and change lives. But what happens when you don’t have the right data? MSIF organised a webinar to find out how organisations are filling MS data-gaps and advocating for national MS registries. You can watch all presentations from the ‘Atlas of MS – the power of data’ webinar below. Get inspired by MS organisations in India and Spain, who are harnessing the power of data for people with MS.
Advocacy and the Atlas of MS
The webinar began with an overview of the Atlas of MS, and how it can be used to support advocacy work. Watch the video below to hear how the Atlas of MS can be used for change in this presentation by Rachel King and Abdelfatah Ibrahim. Rachel is MSIF’s Senior International Evidence Manager and Atlas of MS project lead. Abdelfatah Ibrahim is the Head of Communications, Campaigns and Advocacy at MSIF.
MS organisations harnessing the power of data
The next part of the webinar featured presentations from MS organisations working to fill data-gaps in the absence of national MS registries. The Multiple Sclerosis Society of India (MSSI) and Esclerosis Múltiple España (EME) both launched MS data projects to improve the lives of people with MS in their countries.
MSSI presentation – The ‘Numbers Matter Campaign’
MSSI presented the ‘Numbers Matter Campaign’, advocating the Indian government for the establishment of a national MS registry. The campaign highlighted the need for accurate MS data across the country. It showed that an absence of MS data causes barriers to affordable treatment, better MS policy and MS research, affecting the day-to day lives of people with MS. The campaign included an online petition and a crowd-sourced MS prevalence map for India. The presentation is delivered by Sandeep Chitins, Honorary National Secretary of MSSI, and Javed Hasan, National Project Director of MSSI. Watch the video to hear more from MSSI’s representatives, including the campaign successes and learnings.
EME presentation – ‘EMDATA’
Pedro Carrascal, CEO of EME, the Biscay MS Society and the MS Basque Foundation, followed with an exciting initiative known as ‘EMDATA’. EMDATA is a centralised data repository bringing information about MS in Spain together in one place. It uses cloud storage and dynamic graphs to show the realities of life with MS across the country. EME will use the platform for future surveys, investigations, and data collection. Watch the video below to learn more about the project and its benefits.
Webinar participants engaged actively in the discussion, sharing questions with the speakers. You can click here to see a write-up of the additional questions and answers from the webinar.
Webcast videos are also available in English, Arabic and Spanish on the MS Resource Hub.
External speaker profiles
Sandeep Chitnis is a Fellow of the Institute of Chartered Accountants of India., (FCA) and a certificate holder in Business Valuation from the Institute of Chartered Accountants of India. He is a Director for the Innovision Corporate Consultants Pvt. Ltd, the Innovision People Development Consultants and SICOM Reality Ltd.
He is one of the Chartered Members of Rotary Club of Mumbai Shivaji Park and its Past President (2005-06), has served as a Director in all avenues of services, he has also served at Rotary District 3141 on various committees.
He is actively helping in many social causes and is involved with the management of Multiple Sclerosis Society of India (MSSI). He was the National Vice President (Hon.) of MSSI from 2015 until October 2021 and currently stands as the National Secretary (Hon.) of MSSI and a member of CEO Advisory Group of MSIF (Since October 2021).
Javed Hasan is a Post Graduate in Health Management from Indian Institute of Health Management Research Jaipur. He is a Public Health professional with 18 years of experience in strategic program planning, program development, and implementation of public health programs. He has extensive work experience in programs related to HIV/AIDS, Cancer, Emergency relief, Child Protection, and Disability with various national and international organizations.
Currently, he is working as a National Project Director with MSSI since June 2020 under the multi-year National advocacy project funded by MSIF. In the last two years, MSSI witnessed two Campaigns called “ReassessMS” and “Numbers matter” under his leadership.
Pedro Carrascal is the CEO of EME (Multiple Sclerosis Spain), the Biscay MS Society and the MS Basque Foundation. He graduated with a Bachelor degree in Law from the University of Deusto in 1996, Masters in Business Administration (MBA) from the University of Basque Country in 2004.
Since 2007 Pedro has been a board member of the MSIF (Multiple Sclerosis International Federation). In September 2012 he became part of the Executive Committee of the EMSP (European MS Platform), being its president from June 2018 to April 2022. He currently remains on its Executive Committee as a Past President. Pedro is fully committed to the Spanish patient movement and one of the promoters of the Spanish “Neuroalianza” ( Spanish alliance of neurodegenerative diseases) created in 2012 and “Plataforma de Pacientes” (umbrella organization for the main patients NGOS in Spain) in 2014.