By Bishakha Mona
“Above all else show the data.” – Edward R. Tufte
Philanthropies recognize that scientists working together, who are not hampered by research silos, distance, technology or language, can create breakthroughs. Moreover, scientists and funders can continue to learn as technology and science evolve. For example, advances in machine learning and artificial intelligence have the potential to change the amount of useful information that can be extracted from existing data. Therefore, supporting data platforms offer significant long-term outcomes. Nonetheless, there are still numerous challenges that must be addressed, and philanthropy’s role is to examine and support the evolving data landscape for the benefit of all.
Privacy and Open Data
A unique challenge faced by the open data movement is dealing with human data where protecting sensitive information and obtaining appropriate consent is crucial. A legitimate concern involves ensuring that identifying information is removed and inaccessible to others. Individual health data and sensitive information on vulnerable populations or children are just two examples.
“Some data contributors need an intermediary place where they can put potentially sensitive data to process it — not only to anonymize record level data but also to make it easier for the research community to work with,” explained Niranjan Bose, interim Executive Director of the Alzheimer’s Disease Data Initiative. “The AD Data Initiative created the AD Curation Studio to provide a solution. Curation Studio is a HITRUST-certified environment offering workspaces with carefully controlled access where contributors can prepare data for submission to the AD Workbench.” The AD Data Initiative’s AD Workbench is a secure, cloud-based data-sharing and analytics environment that also brings together a wide range of datasets/platforms on Alzheimer’s Disease and related dementias, alongside tools to help researchers collaborate and conduct analyses.
Unlocking the full potential of the information collected by researchers about Alzheimer’s and related dementias requires making data and tools accessible to members of the research community. “Enabling users to easily find datasets that would help them answer the questions they want to; facilitating the permission process with the data contributors and providing alternatives to copying and moving the data around all the time would be a win-win for everyone” observed Bose. “With AD Workbench we want to make more data platforms interoperable, so researchers can request, access (or share), and analyze data across multiple platforms, all with the aim of fostering more efficient research collaboration.”
With tools like AD Workbench and AD Curation Studio, the AD Data Initiative coalition and its partners help remove silos while protecting privacy. By enabling secure but seamless access to interoperable data sharing platforms, unlocking important datasets, and empowering researchers, the AD Data Initiative hopes to accelerate the discovery of new diagnostics, treatments, and cures. “When the world’s best data is made available and usable by talented researchers, we enable novel insights and new breakthroughs in Alzheimer’s and related dementias research,” noted Bose.
Opening the Door for Everyone
Advocating for philanthropic support for open data platforms and open science also increases diversity, equity, inclusion, and belonging in science. Increasing the diversity of datasets from populations throughout the field and allowing researchers access is one of the most important things philanthropists can do to advance research. Cloud-based platforms bring existing datasets to more researchers who previously may not have had access. Consequently, many philanthropists are funding data solutions that allow global researchers to identify meaningful and actionable insights.
One example is the ongoing efforts to increase the diversity of the datasets available to researchers. “With the Global Parkinson’s Genetics Program (GP2), one of the goals is to increase ancestral diversity for genetics research for Parkinson’s,” said Sonya Dumanis, Deputy Director of Aligning Science Across Parkinson’s (ASAP), an initiative launched by the Sergey Brin Family Foundation. “Before officially launching, we focused on operational components that would benefit all involved, such as standardized consent language as well as other value-adds that we can provide to researchers (e.g. bioinformatics support to analyze their own data) so that when they are sharing data with us, they are also getting something back in return.”
Investment is Crucial
While several philanthropists have already begun to fund open science, further investment in data science and open data platforms are necessary to support all research areas. There is a need for more investment in platform technology and tools for researchers, as advances in machine learning and AI evolve. The potential to change the amount of useful information to be extracted from existing data will increase exponentially.
In addition to tools and technologies, bringing in data scientists and/or providing resources for personnel to train in computational technology are also crucial investment points for philanthropists.
“I encourage funders to think about the project manager position. [On] Every collaborative team that we fund, there is a project manager, who is devoted to ensuring that the project moves forward and can be involved in the data curation component,” said Dumanis of ASAP. “Not everyone in the lab knows what to do and some are focused on the research. We have budgeted for a person to be the [data] champion for that project.”
Philanthropic support for open data platforms helps build capacity and encourages use and interaction. “Philanthropists can fund discrete aspects of an existing platform. Talking broadly, helping infrastructure, creating a longer footprint, and providing resources for workshops for those campuses or researchers who don’t know how to leverage them [data platforms] are huge in creating a ripple effect for the data to be used and taken up.” Said Kathryn Richmond.
Making Discovery Science More Discoverable
Open data platforms are not a panacea for curing diseases, but they are an incomparable mechanism for collecting, curating and deciphering data that may one day lead to a cure for one or several diseases. Just like the repositories that enable scientists to study the effects of COVID-19 in real time across varied demographics and geographies, the technologies exist but must be optimized for scientists to leverage the data in more effective ways. The Alliance believes this represents an opportunity for philanthropies and funders to merge resources, knowledge, and skills to take open data platforms to the next level—truly making discovery science more discoverable.
The Alliance continues to work with like-minded organizations to educate philanthropists about the potential of funding open data platforms. The Alliance organized a virtual workshop in June of 2023, Funding Infrastructure to Advance Scientific Discovery, to discuss how philanthropic support for open data can r equip investigators with better tools to improve scientific discovery. The Alliance also continues to advise philanthropists interested in scientific projects to invest in infrastructure for data and AI applications.
To learn more about the opportunities to fund open data platforms, please reach out to Bishakha Mona at bmona@sciphil.org.
Other Resources for Further Reading
From Open Data to Open Science
Data platforms for open life sciences–A systematic analysis of management instruments
