A rising star in the RWD/RWE domain, Prof Liesbet Peeters, her journey in addressing frustrations in working with data, and answering key questions in Multiple Sclerosis

In the second episode of season 3 we meet with Assistant Professor Liesbet Peeters, leading a research group at the Biomedical Research Institute & Data Science Institute, Hasselt University, Belgium, and the lead for the Multiple Sclerosis Data Alliance (MSDA). Liesbet has been described as a 'rising star' in the domain of real world data/evidence, and she had a very interesting path to her current position with a background in bioengineering, gene and cell technology, animal production, and veterinary science and focus on data.

We explore Liesbet's trajectory and work in the field of multiple sclerosis, the challenge with working with relevant and representative data, and in particular an 'accidental' interaction with the European Medicines Agency through a workshop, with key recommendations on enhancing the FAIR-ness of MS data. What has frustrated Liesbet is the inability to answer questions we readily ought to be able to, whether in MS or more widely. In working with colleagues, for instance the European MS Platform (EMSP), European Charcot Foundation. and others, Liesbet took the lead in creating the MSDA to respond to these frustrations over the last five years. Alongside this, Liesbet has been collaborating with e.g., EBRAINs, ELIXIR Belgium, DataSavesLives, et al, internationally and locally to address wider aspects of working with RWD/RWE. Liesbet outlines the details of collaborating and building and the complexity involved in the episode.

While Liesbet provides a fascinating insight into building a startup in working with data, she goes on to explore the recent work on COVID-19 and MS, answering critical questions quickly to address patient and clinician concerns as the pandemic emerged internationally. Beyond this Liesbet outlines her vision for the future, the collaboration with multiple stakeholders, initiatives and networks, but most importantly working with, 'amazing people'.

A future meeting, led by Liesbet and colleagues on 16th November in Baveno, Italy, on the, 'Use of Artificial Intelligence and Great Data to reveal progression in MS' is still open for registrations.

The views expressed by the participants are personal and not necessarily reflective of their organisations.

Listen to the episode here or via your preferred podcast app.

A personal perspective from Prof Dipak Kalra, President, Institute for Innovation through Health Data: a forty year view on systems, policies, technology and incentives

Welcome to this first episode of season 3, and a great way to start, with a conversation with Prof Dipak Kalra, formerly a Primary Care Practitioner in London, UK, academic at University College London, and Ghent University, and President of the Institute for Innovation through Health Data (i~HD). Dipak is internationally known and renowned with a reputation for cogent and clear thinking around health data, data interoperability and quality, and policy development, with i~HD being a leading European-based organisation dedicated to advancing the field.

In this episode, Dipak reverts back to his experiences in general practice in the 1980s, and the advent of electronic health records systems being introduced also to support use of data for research, albeit with underlying challenges around ethics and privacy governance, which of course still pervade to today. We discuss some of the challenges around ethics of data use, and privacy preserving aspects, as well as some of the more recent innovations, while focusing on the balance between risks of harms, versus benefits for patients themselves.

Dipak outlines the vision and direction of i~HD, from its origin in the IMI EHR4CR project, today and in the future, particularly regarding collaboration and safer use of health data, data quality, best practice, and policy development in this domain at a European level. Ultimately, i~HD acts as a neutral catalyst in addressing development and innovation. Lastly, Dipak describes the vision he has for health data use, RWD/RWE and a 21st century frameworks to meet the explosive need for evidence, avoiding 'bureaucratic processes' and ensuring enhanced efficiency in generating RWE.

The views expressed by the participants are personal and not necessarily reflective of their organisations.

Listen to the episode here or via your preferred podcast app.

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