Foundation S uses data sharing to fight childhood cancer

Data is central to showing the results of the projects supported by My Child Matters, as is creating a global community around child cancer. These aims are being achieved through a data marketplace shares best practices and project results.

Since launching My Child Matters, we have collected large volumes of data that show the impact of individual projects. We wanted to share these more broadly by creating a data portal that would:

• Facilitate and increase networking between project staff
• Share project and scientific data more widely
• Build a collaborative community that includes parents, global health organizations and policymakers

To achieve this we created our open data marketplace in April 2022, showcasing historic data on all projects funded across 88 countries since My Child Matters began in 2005.

Through an interactive map, users can easily view the location of every one of our program’s 184 to date on both a national/regional level, the number of children impacted, healthcare professionals trained, location, and any academic publications. Drilling down further provides details on individual projects, including their exact focus, the organization behind each one, key personnel and year of funding. A separate map, built on a subset of data, shows all projects led by nurses, selected by program partner the International Society of Paediatric Oncology (SIOP).

By showing the impact of projects in a clear, visual way the interactive map was the first stage in creating greater awareness for the program, both internally at Sanofi and with the global childhood cancer community. As it is normally harder to generate and collect data in low and middle-income countries this information is particularly valuable to improving survival rates across the entire globe.

Driving networking with on-going projects

Initially the portal focused on historic data, showing completed projects across the globe. Moving into 2023 we built on this by adding information and data on current and future projects, with the aim of increasing engagement with partners and beneficiaries.

To achieve this our team now creates more detailed individual profile pages for every project, telling each one’s story. We leverage these profile pages to empower project leaders from developing countries, supporting them to communicate on their projects. This approach aims to increase networking between different project teams and with the entire global community. As new projects receive funding they are automatically added to the portal, delivering a growing resource around tackling childhood cancer.

Knowledge sharing through a publications library

Some of the program’s projects have been used as the basis of research studies and scientific papers. To make it easier to access these publications, which range from peer-reviewed journal articles to shorter conference ‘poster’ papers, the portal now includes a publications library that collects and consolidates all of this information in one place, allowing easy research for end users.

Readers can drill down by country, type of publication, or organization, with the library providing transparent access from the portal. This further demonstrates the impact of projects and builds a stronger community. The aim is also to encourage all projects to publish more systematically.

We selected Huwise to provide its data product marketplace solution, based on a combination of its advanced, but easy to use data marketplace technology, experience and comprehensive support. We are benefiting from three features in particular:

Through our My Child Matters open data platform, Foundation S is able to increase usage and access to our data, delivering results in three key areas:

• Demonstrating its impact: Through the interactive map, project pages and publications library, the entire childhood cancer community can easily see the impact of My Child Matters at a global and local level. This drives greater awareness and engagement, helping to build lasting networks. Over 500 users from 14 countries have accessed the portal, making over 719,000 data requests via API calls. Average time spent on the site is increasing, showing the growth in engagement.

• Increased efficiency and autonomy: My Child Matters projects are focused on improving childhood cancer survival rates in low and middle-income countries. As the portal is easy to administer and develop, there is no requirement to employ expensive data specialists, ensuring that the maximum funding is available where it matters: for projects across the world.

• A future proof solution: We have a roadmap to continually improve its portal, sharing data as widely as possible. Thanks to the flexibility of the Huwise solution it is easy to extend our marketplace, such as by adding new types of data (videos, photos and written testimonials) to project pages in the future to make them more engaging and to encourage networking.