Interview with Project Leader: Jyaysi Desai

“Clear communication to avoid misunderstandings is essential in a consortium with diverse expertise”

Work package 7 is about ‘Ethics and legal’ and is led by Dr. Jyaysi Desai, PHD. She works as a project manager in the rheumatology department at the Leiden University Medical Centre (LUMC) with Prof. Rachel Knevel. Originally from India, she completed her master's from King’s College London and did her PhD in immunology from LMU Munich. Desai: “Six years ago, I moved to the Netherlands for postdoctoral research, where I held two positions: the first three years at LUMC working on autoimmune diseases, and then at Erasmus Medical Centre in Rotterdam on cancer immunology. Since September last year, I've been a project manager in the rheumatology department at LUMC. 

I was looking for a role with a broader scope, and this opportunity to be part of large consortium projects and engage in management and student supervision has been very interesting so far”.

Ensuring ethical compliance and data security

The aim of work package 7 is to ensure compliance with the laws and regulations of member states regarding all ethical aspects of this proposal. This work package focuses on harmonized rules for digital tools, particularly the supervision of patient data use within the European Union, and in the design and development of the clinical trial. The ethics framework will guide other work packages to achieve the highest quality results. As the leader of work package 7, Desai takes care of coordinating all legal paperwork. This involves managing privacy issues related to primary and secondary care data, including clinical data. Desai: “My role is to create a system that allows safe data sharing between countries, ensuring patient safety, security, and privacy, especially with the use of machine learning and artificial AI. I bridge the legal, ethical, and privacy aspects, working with legal teams across different institutions and coordinating documentation. Additionally, I handle general project and scientific management”.

Facilitating collaboration

Desai highlights one of the main challenges in the SPIDeRR project, which is ensuring data sharing among partners while complying with privacy laws. This involves extensive paperwork and developing tailored solutions for each partner. She notes that the upcoming AI Act further complicates matters, as legislation for big data and machine learning research is still evolving. Her function is to find solutions that facilitate research while establishing a legal and policy framework, addressing a challenge faced by many multi-country projects in Europe.

Transitioning from discussing the challenges of data sharing to her role in facilitating collaboration, Desai acknowledges that although her background in research helps her understand and support the motivations behind the research, she lacks a legal background. The key is to bridge the gap between researchers and legal teams to facilitate collaboration. “I hope to contribute to this process, and I see a value in my work, especially as privacy-related challenges are likely to increase with advancements in AI.” Desai sees her role as facilitating communication and connection between individuals with diverse backgrounds within the consortium. She believes clear communication is essential to avoid misunderstandings and ensure smooth collaboration, particularly as privacy-related challenges are expected to increase with advancements in AI. “You often assume others know what you do, but they don't. Clear communication to avoid misunderstandings is essential in a consortium with diverse expertise. My function involves facilitating this communication, helping people connect despite different backgrounds and expertise.”

Forging collaborative innovation

Desai highlights the diversity within the consortium, which encompasses not only various countries but also a wide range of backgrounds. “We have rheumatologists, clinicians, geneticists, bioinformaticians, data scientists, project managers, patient organizations and industry partners. Being part of such a dynamic team where everyone brings unique perspectives to address significant research questions is exciting”, she notes. Meetings like the one in Budapest are particularly motivating, especially for junior researchers, as they facilitate human connections and personal relationships among colleagues, ultimately enhancing collaboration.
Looking ahead, Desai envisions herself continuing to make impactful contributions to science and innovation, whether within academia or industry. “I value my position as a project manager and find fulfilment in bringing partners together and would like to remain in a leadership position and contribute to meaningful projects.”