6 ways data sharing can shape a better future

This article is brought to you thanks to the collaboration of The European Sting with the World Economic Forum.

Author: Cathy Mulligan, Co-Director, Imperial College Centre for Cryptocurrency Research & Nadia Hewett, Project Lead, Blockchain and Distributed Ledger Technology, World Economic Forum & Kimberly Bella, Project Fellow, Centre for the Fourth Industrial Revolution, World Economic Forum LLC

• The COVID-19 pandemic has highlighted a global reluctance to share data, despite its potential to solve societal problems.
• A new report from the World Economic Forum, Data-driven economies: Foundations for our common future, outlines how improved governance can help unlock the value of data.
• The following six examples outline how we might solve critical problems using these proposed data governance models.

The COVID-19 pandemic surfaced the shortcomings of the world’s collective approach to data. Inability – and sometimes unwillingness – to share and use data to combat COVID-19 or to protect against predatory uses of data have negatively impacted society. A lack of trust combined with asymmetric economic interests are slowing progress. The importance of finding solutions to improve outcomes in times of crisis is undeniable, but enormous opportunities also exist across a myriad of ordinary use cases and for normal day-to-day life outcomes.

There are 2.5 quintillion bytes of data created each day at our current pace, but that pace is only accelerating with the growth of the Internet of Things (IoT). Most of this data is siloed – it is trapped in walled-off databases – even within a specific jurisdiction. The inaccessibility exists due to a variety of complexities, cutting across policy, regulatory, commercial and technological barriers.

How can we create opportunities to unlock data to solve critical challenges? Whether those purposes are for climate, health, mobility or others. What can better outcomes look like? Importantly, how do we ensure that any governance models developed are grounded in responsible, ethical and fair use?

Today’s technology advances allow us to enable responsible data sharing in ways that were previously impossible. Coupled with ethical and innovative commercial and policy enablers, better outcomes are possible with best efforts among collaborative entities. Data

What is the Data for Common Purpose Initiative (DCPI)?

The Data for Common Purpose Initiative (DCPI) is a first-of-its-kind global initiative formed to design a governance framework to responsibly enhance the societal benefit from data.

The framework, launched December 2020, was created to refocus data policy and models towards common purposes that will enable differentiated permissioning of the same data, depending on context. Such flexible data governance models could enable government-led data exchanges that can promote a transition to a data-driven economy.

Historically, institutions and existing policy and regulatory models have attempted to balance data protection with business incentives. The DCPI will reorient governance to the realities of data sharing, developing a framework to enable access to data for intended and agreed upon purposes, without compromising individual privacy rights.

A recent report, Data-driven economies: Foundations for a common future, explores some of these themes further, looking into the key enablers businesses, civil society and government must get right in order to lay the foundation for a better future through data sharing.

A new report from the World Economic Forum, Data-driven economies: Foundations for our common future, outlines five requirements which systems and governance models need to meet to leverage data for better outcomes. It explores how new systems and governance models can create a commercial, technical and policy environment to unlock the full value of data for society.

With responsible and new data governance models, we can design for a better future. The following six examples imagine how we can solve critical problems through new data governance models that responsibly combines data from personal, commercial and/or government sources, while removing some unintended policy barriers.

1. Solving rare diseases

The challenge: Approximately 10% of the global population or 475 million people are affected by a rare condition, with an estimated 15.2 million individuals expected to have clinical genomic testing for a rare condition within the next five years.

What is the future we want to create together: We have built a world where we provide researchers and clinicians with access to global rare-disease data sets. Genomic data, coupled with phenotypic and clinical data, is a critical resource that can shorten the diagnostic odyssey faced by rare-disease patients. It can also power research and innovation in diagnostics and therapeutics. A federated data system is one method that allows local institutions to protect sensitive personal health data while still providing remote access to datasets for diagnostic capacity.

“The solutions to many rare diseases are available, but they are trapped in an isolated clinical record that’s often in another country. With new solutions to remotely aggregate and access sensitive health data while still adhering to local data privacy and security laws, there is an opportunity to finally provide answers to the 300 million+ people living without a treatment for their rare disease.” Lynsey Chediak, Project Lead, Shaping the Future of Health and Healthcare, World Economic Forum. Data

What is Authorized Public Purpose Access (APPA)?

Authorized Public Purpose Access (APPA) is a governance model designed to maximize the socially beneficial potential of data while protecting individual rights such as privacy and the legitimate interests of data holders.

A recent whitepaper released January 2020 explains this in detail, proposing an approach to data governance that prioritizes value creation that benefits a broad range of stakeholders including society as a whole. Using healthcare data, the authors examine existing data-governance models, finding that most models are biased toward the interests of one of three major stakeholder groups—individual data subjects, technology companies, and other data holders, or governments (whose interests may or may not align with those of their citizens).

Read more here

2. Shaping healthier lives

The challenge: 71% of all deaths globally are caused by non-communicable diseases (NCDs). Accelerated by unhealthy, uninformed or inaccessible consumer choices, individual health has now risen to be one of the greatest societal challenges faced today. Worse yet, crises like COVID-19 demonstrate the massive threat that an unhealthy population poses to modern societies.

What is the future we want to create together: Imagine a world where every nutrition, exercise, beauty or health product or service for consumers is tailored to their unique biology, lifestyle and behaviors. A world where individuals receive personalized and trusted insights that empower them to live the heathiest lives possible through responsible, science-backed lifestyle and consumption recommendations that are tailored to their unique mental and physical health needs. A world where consumers own and control their own data and use it to inform their personal decisions to improve their overall wellbeing.

“The Precision Consumer 2030 initiative aspires to establish the first ever precision consumer ecosystem and public-private data collaborative that will gain learnings to inform and advance innovation, research, governance and consumer adoption of precision solutions in a way that is equitable, trusted and consumer-centric.” Andrew Moose, Head of Retail, Consumer and Lifestyle Industries, World Economic Forum.

3. Solving humanitarian need for food and essential goods

The challenge: World hunger is on the rise. Globally, about 8.9% of the world’s population – 690 million people – go to bed on an empty stomach each night. Since 2014, the number of people affected by hunger has been slowly on the rise. If it continues at this rate, it will exceed 840 million by 2030. In 2020, Oxfam projected that up to 12,000 lives per day could be lost due to starvation.

What is the future we want to create together: The objective is to provide humanitarian, industry and public stakeholders with a system-wide view that can only be achieved through harnessing the power of combined private and public sector data elements, to allow near real time visibility of the flow of food and essential goods at a global and local level. Identifying and relieving bottlenecks is crucial to getting humanitarian supplies where they need to be, and aggregated data insights are key to creating future supply system resilience that leads to protection and preservation of lives at risk, especially during crisis.

“Harnessing data and existing technology platforms to create open-source visibility tools, aggregating ‘least granular level’, anonymised transport, commodity and disruption data, to deliver global system-wide visibility can enable prompt, even pre-emptive action. Through conceptual development of a ‘Global Supply System Dashboard, the Forum is engaging international bodies, industry partners, and broader ecosystem stakeholders together to inform the development of such ‘meta-layer’ visibility solutions, providing a unique opportunity to build systemic resilience that can lead to multiple benefits, not least protecting livelihoods and lives vulnerable to crisis.”Margi van Gogh, Head of Supply Chain and Transport, Shaping the Future of Mobility, World Economic Forum.

4. Shaping the future of urbanization

The challenge: By 2050, nearly 70% of people will live in a city. The world is urbanizing at unprecedented speed and scale. From public health, infrastructure assets, mobility to transport, the most valuable data for building new services and improving social outcomes resides at the local level, fragmented across multiple agencies and stakeholders.

What is the future we want to create together: Help cities to harness data to grow inclusively and sustainably. Data helps through citizen participation, better targeting of government support and universal access to services, tailoring services for the community and democratizing access to city policymakers.

“We know that digital and data infrastructure in our cities is crucial to their resilience and sustainability over the long term. The Forum is already helping cities to build that infrastructure through the G20 Global Smart Cities Alliance. To get the most value from smart city technologies, we can go further to unlock data that sits across multiple sectors and stakeholders, in service of the public interest.” Rushi Rama, Smart Cities Lead, World Economic Forum.

5. Shaping sustainable oceans

The challenge:There is an abundance of oceans data available, more than 200 open sources have been mapped, but at the same time thousands of data sets are still siloed, limiting our ability to increased insight and knowledge about the ocean.

What is the future we want to create together: Greater access to data sets and technology across industries, governments, science and citizens to ensure balance of a productive and healthy ocean.

“Through the Ocean Data Platform, we aim to be the largest and most inclusive hub for ocean data sharing. It is an advanced data integration platform utilizing new technologies that enhances the flow of ocean data from sensors and data sources all around the world, in all different types and volumes. By uploading the worlds largest open ocean data set, containing data from more than 220,000 research cruises, 1.95 billion temperature profiles and 1.13 billion sailinity profiles dating back to the 1890s, the time to access these data has been reduced from days and hours to seconds.” Bjørn Tore Markussen, CEO C4IR Ocean, Ocean Data Platform

6. Shaping the long-term sustainability of tourism

The challenge: The travel and tourism industry accounts for 10% of global GDP and employment, but its long-term resilience and role in economic development and connectivity is challenged by issues such as overcrowding, cultural and environmental degradation and overall destination capacity constraints.

What is the future we want to create together: Public and private stakeholders can integrate their data sets and leverage big data and digital platforms to allow real-time tracking of the supply and demand for destination tourism resources, leading to interventions that enable the sustainable, inclusive and resilient development of the tourism industry.

“Sustainable tourism is about the efficient use of destinations’ limited resources and capacity to maximise benefits for locals and visitors alike. Unlocking the potential of big data and other digital tools is vital for achieving this and making sustainability an opportunity and not a cost for the sector.” Maksim Soshkin, Data for Destinations Lead, Shaping the Future of Mobility, World Economic Forum.

Future of data requires a balanced approach

These scenarios are entirely plausible today. However, without proper protocols and governance, society risks creating a world in which access to data is overly restricted, impeding significant human progress and innovation, or in which authorities require data sharing without striking a balance that respects the rights of the individual parties involved, including businesses. The Data for Common Purpose Initiative (DCPI), launched by the World Economic Forum in 2020,is one such initiative that aims to collaboratively articulate parameters for responsible, equitable and ethical use of data to solve these challenges.