Putting Open Science into Action to meet global health challenges

Patient advocates, researchers, funders, and policy makers came together last November to advocate for the role of Open Science in research as a solution to finding new treatments where they are most needed.

Patient-centered research, social and artificial intelligence, and new incentives for collaboration were at the heart of the 3rd Neuro Open Science in Action Symposium. Organized by the Tanenbaum Open Science Institute at The Neuro (Montreal Neurological Institute-Hospital), the Symposium brought together researchers, funders, policy-makers, patient advocates, industry leaders, and the public for two days of lectures and discussions on Open Science in diverse biomedical fields, held virtually on November 23 and 24, 2021.

The Symposium focused on fields where Open Science could do the most good, and where traditional models of research and development have failed. The event included sessions on rare diseases, antivirals, tropical and infectious diseases, AI, and global health, as well as on neurological disorders.

“This year, we returned to the reason The Neuro committed to Open Science: helping patients,” said Guy Rouleau, director of The Neuro. Sessions explored how science “can be opened to meaningfully include the patient perspective,” and how Open Science and new technology are driving research collaborations around the world.

“It's important to recognize that what we do, and how we do it, matters in terms of the impact on patients’ lives,” said Hilal Lashuel, director of the Laboratory of Chemical Biology of Neurodegeneration at the Swiss Federal Institute of Technology Lausanne (EPFL). “If we do collaborative Open Science research, it helps accelerate discovery and it’s likely to ease the suffering of the people who are affected.”

Panelists across various sessions echoed the need for patient integration into the research process. Working with patients from the very beginning “really helps the richness of the design of the clinical trial,” said Karen Lee, CEO of Parkinson Canada, and ensures that the focus is on what matters most in patients’ daily lives.

Moving beyond IP and data secrecy

Open Science is particularly powerful in fields like neuroscience, where global collaboration and transparency are vital to unraveling the complexity of the brain. However, research institutions and industry suffer from delays to open collaboration because of intellectual property barriers and data secrecy.

Speakers called on institutions and policy-makers to adopt open practices, minimize redundancy, and maximize meaningful progress in treatment development. They discussed how a lack of standards and “technical debt” – bad decisions that were made in the past on how to collect, structure and share data – are impeding global dataset integration, and urged funding agencies to reconsider how they evaluate and incentivize researchers’ work.

We want the pace of discovery to be accelerated,” said Kirsten Taylor, biomarker and experimental medicine leader at Roche. “Let's compete on the molecules, but let's not compete on the basic science and the tools that we need to test the molecules in clinical development.

Creating a culture of change in data sharing

Open Science is about creating a culture of change in how we approach and share knowledge. “A real power of Open Science … is not just to capture the minds of people who think about this every day, but to capture that expertise from everybody who would like to contribute,” explained Nat Moorman, associate professor at the University of North Carolina at Chapel Hill.

Ensuring research breaks out of its field means modernizing scientific publishing and research databases. Attendees heard from the chairs of publication platforms NeuroLibre and Aperture – dynamic, community-driven initiatives that are fully interactive and allow users to integrate and run code, – and founders of growing Open Science initiatives like Foundation 29’s HealthData29, ESPEN, the Monarch Initiative, and Ersilia.

Speakers addressed concerns about incentives for academics to publish openly, and referred to the COVID Moonshot, an interdisciplinary, global effort to develop an accessible COVID-19 treatment, to show the willingness and success of the Open Science community pushing the traditional limits of intellectual property. Panelists also discussed how these projects are expanding through easy-to-use software tools and AI.

Open Science and AI

Artificial intelligence in research needs Open Science. Without the worldwide Protein Data Bank (PDB), Google DeepMind’s watershed AlphaFold project would not have been possible, said Sameer Velankar, leader of PDB Europe at the European Molecular Biology Laboratory (EMBL) European Bioinformatics Institute. “Without [Open Access], I don’t think we would be in this state [of advanced structural predictions]. … You need really good datasets to learn from.

However, panelists were careful to point out that artificial intelligence should never overshadow social intelligence. AI is limited by the dataset it is trained on, and diligent repository maintenance is difficult.

In an ideal world, we would get all registries to work in a decentralized manner, where the record is not only stored in the registry database, but stored with the patient [registry]. Governance, if you do that, and you have a simple, dynamic consent model, is … not difficult,” said Pablo Botas, CEO and CSO at Foundation 29. “You could get patients to participate actively in pretty much any project.

Building a global community

The mission for building communities of patients, clinicians and researchers resonated across all Symposium sessions. Speakers stressed the importance of giving a greater voice to scientists in lower income countries and of supporting the research community on the ground in the Global South.

Quite often, I find that the final analysis, end-stage components of the work are still heavily dominated by institutions in the Global North,” said Rachel Pullan, deputy director of the London Centre for NTD Research. “This is something I think, as a community, we really need to think about: not just increasing access … but also improving use.

Especially in an increasingly polarized world, getting the data in front of policy-makers requires collaboration and transparency.

You shouldn’t be working in silos,” said Janet Hemingway, chair of vector biology at the Liverpool School of Tropical Medicine. Instead, “try to make sure that we have communities that are working together, they work together openly, and they’re talking together, and we can pull together these relatively complex programs in ways that actually work for everybody.

The Open Science community is vast and varied, and it is growing. New researchers should embrace Open Science from the start, panelists said. Initiatives like appointing student champions and focusing on open research practices in their own neighbourhood foster awareness and community progress. Speakers urged researchers to take a step back and examine where the health disparities are in their field, and to collaborate with stakeholders across many disciplines.

The Symposium also included the awards ceremony for the Neuro-Irv and Helga Cooper Foundation Open Science Prizes, recognizing people, tools, and projects that are driving Open Science in neuroscience across the world, and the presentation of a new scholarship in memoriam, the Dale Hatrock Award for Open Methods Development.

The 2021 Neuro Open Science in Action Symposium was made possible by the generous support of the Gairdner Foundation, the Krembil Foundation, the McGill Faculty of Medicine and Health Sciences with the generous support of the Rose Wiselberg Foundation, and the Fonds de recherche du Québec – Santé.


If you missed the livestream, the session recordings are available here.

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The Neuro (Montreal Neurological Institute-Hospital) is a bilingual academic healthcare institution. We are a McGill research and teaching institute; delivering high-quality patient care, as part of the Neuroscience Mission of the McGill University Health Centre. We are proud to be a Killam Institution, supported by the Killam Trusts.




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