People with Parkinson’s and European experts from a range of fields including research, IT, physiotherapy and data science are coming together to form Parkinson’s Europe’s new Data and Innovation Steering Group.
The Data and Innovation Steering Group has been established to guide and support Parkinson’s Europe’s new strategy, focusing on the first of its three strategic pillars.
Members will use their personal and professional insights to agree on activities that meet the needs of all relevant audiences, in line with the Data and Innovation pillar.
The group held its first bimonthly meeting this month, co-ordinated by Parkinson’s Europe’s Advocacy and Campaigns Manager Hildur Kristjana Önnudóttir, Outreach and Engagement Manager Jessie Duncan and Strategic Director Amelia Hursey. The first stage will include “trying to collate as much information from already existing data sets that might be useful in helping us to understand the social impact of Parkinson’s in Europe”, according to Amelia.
She adds: “We will also be gathering knowledge about current innovations linked to Parkinson’s to make sure we have a full picture of the work happening in the area. From this work, the plan is to create a list of activities linked to the two other strategic pillars, making sure that the insights we gather strengthen our strategic direction.”
Meet Parkinson’s Europe’s new Data and Innovation Steering Group members:
Anastasia Markidi is a pharmacist and researcher with a PhD focused on Parkinson’s disease
“I have always been curious to understand the mechanisms behind this disease and contribute to finding new treatments. I want to help make research and data more useful and accessible for the Parkinson’s community.
“During my PhD, besides studying the biological mechanisms of Parkinson’s, I had the opportunity to connect with people living with the condition. Hearing about their challenges inspired me to help in improving their daily lives.”
Isabelle Wilputte has worked in the pharmaceutical industry for more than 25 years, doing project management across various departments
In the past few years she has worked as Patient Engagement & Advocacy lead, mostly in the Parkinson’s space.
“I would like to contribute to, and also learn from, this initiative aiming to create a better understanding of Parkinson’s in Europe, as there are still so many data gaps to fill.”
Jean-Alain Jachiet has held various IT roles in the media sector over the past 35 years, including positions at Warner Music, Havas and RTL Group
Following his Parkinson’s diagnosis, he founded a company focused specifically on applying Artificial Intelligence (AI) for monitoring neurodegenerative diseases.
“I believe that by collaborating with others in the group, we can relay research information about Parkinson’s disease across Europe, a condition still poorly understood by the public.”
Josefa Domingos is a specialist physiotherapist, researcher, and educator with more than 20 years of experience dedicated exclusively to Parkinson’s
“My work encompasses various areas in Parkinson’s, with a special emphasis on improving mobility, promoting exercise habits, and providing accurate information for all individuals living with Parkinson’s.
“I want to help advance research and improve care for people with Parkinson’s.”
Kieran Breen is Head of Research at St Andrew’s Healthcare, a mental health charity in the UK working to deliver specialist inpatient and community mental healthcare services
He has represented Parkinson’s Europe at the Committee for Advanced Therapies at the European Medicines Agency since 2013. Here, he gained a great insight into the processes underlying the registration of new medications.
“I have worked in medical research for over 30 years, and understand the importance of the use of clinical data to understand conditions such as Parkinson’s, especially in these days of artificial intelligence and machine learning.”
Mark Gibson is a polyglot research methodologist, and has a company that conducts patient-centred studies globally
“A lot of our work takes into account the cultural aspects of people living with Parkinson’s around the world. I am interested in being part of this group because I want to offer the learnings and experience I have gained in this area to a non-commercial activity in order to be of benefit to the association.”
Nicole Thorpe has a background in tech and innovation, and is living with young-onset Parkinson’s
“I am full of ideas and always up for reimagining how things could be. I am passionate about shaking up innovation for Parkinson’s to better reflect real life.
“Therefore I am excited to join this group to explore how data and innovation can help make Parkinson’s less of a challenge. More inclusive, and truly shaped by lived experience.”
Svetlana Gogolin lives in the UK and has more than 25 years of experience in healthcare market research, analytics, and data science
She has worked for several leading healthcare research institutions, and led a large data science and advanced analytics team. She has also been responsible for developing and supporting new methodologies in her role as Chief Research Officer.
“After being diagnosed with Parkinson’s in 2024, I am eager to contribute my professional knowledge and expertise to Parkinson’s Europe, helping people with Parkinson’s. I am driven by the hope of inspiring better healthcare and potentially achieving better patient outcomes through my work in healthcare market research and analytics.”
Read more about Parkinson’s Europe’s 2025-2028 strategy
