Health and Healthcare

12 ways a human-centric approach to data can improve the world

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How can we put the 25 quintillion bytes of data generated every day to best use?

How can we put the 25 quintillion bytes of data generated every day to best use? Image: Robynne Hu / Unsplash

Kimmy Bettinger
Expert & Knowledge Communities Lead, C4IR

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Twenty-five quintillion bytes of data are generated every day. That’s 25,000,000,000,000,000,000.

In this era of data abundance, it’s easy to think of these bytes as a panacea – informing policies and spurring activities to address the pandemic, climate change or gender inequality – but without the right systems in place, we cannot realize the full potential of data to advance a sustainable, equitable and inclusive future.

As our global challenges grow increasingly urgent, it is clear we need to approach data in a new way. On 8 September, the World Economic Forum and the City of Helsinki are bringing together innovators around the world for a virtual webinar - A Human-centric Approach to Data for Progress, People and the Planet – to discuss a new way, one that is centred around the values, needs and expectation of people.

We invited a few of these leaders, practitioners and experts to share their ideas on sparking positive change through a human-centric approach to data.

Where do you see a human-centric approach to data having the greatest impact? And what is your best piece of advice for making this happen?

Closing the digital divide in cities

Carlos Santiso, Director, Governance Practice, Digital Innovation in Government, Development Bank of Latin America

Bogotá, Colombia
Bogotá, Colombia Image: Delaney Turner / Unsplash

"In developing countries, closing the growing digital divide in megacities is central to building back better. Cities in poor countries are scarred by exclusion, informality and inequality. To be a genuine tool for people-centered solutions, data must be inclusive and representative of the many realities of cities, not just of the data-rich.

"In Colombia, we have witnessed the importance of public data - government statistics, administrative data and public registries – to better target and transfer social emergency assistance during the pandemic. Ingreso Solidario, for example, is leveraging multiple datasets to better identify beneficiaries.

"We must not let data exclusion become another face of inequality and informality in poor countries’ large cities.”

Rearranging power dynamics

Viivi Lähteenoja, Project Fellow and Special Adviser, City of Helsinki

"Data is power. One of the greatest opportunities – and most pressing needs – I see for impact with human-centric approaches to data is rearranging power relations to be fairer and more equitable.

"To correct the asymmetries in power that currently define both the digital and non-digital realms, there are two routes we can take: we can tear down the already powerful, or we can lift up the currently disempowered. If we choose the route of empowerment, human-centric approaches and making data centre around people, and not the other way around, are essential in realising more fairness and equity in our societies."

Enabling a safe and successful Olympics

Eric Pol, Chairman, aNewGovernance

Image: / Unsplash

Recently, the Caisse de Depots – a French public sector financial institution serving the public interest, social cohesion and economic development of France since 1816 – announced they will create a data space for the Paris 2024 Olympics, where actors will share data with participants to enhance the accommodation and transport experience.

“By sharing information in a fair and controlled way, this project – called THEMIS – can empower individuals, improve their travel experience (more focused and varied), and relaunch a sector that suffered so much from the COVID-19 pandemic.

“However, for Themis to become a reality, the key component won't be technology. It will be governance that ensures all stakeholders have trust in the network in terms of permission management, liability issues, contextualisation and payment. Trust has to be regained on all fronts, and only a human-centric approach will bring this, while creating a more level-playing field and reintroducing healthy competition.”

Redefining the patient experience

Chrissa McFarlane, Founder and CEO, Patientory

Image: National Cancer Institute

"A human-centric approach, which can be categorized as inclusion, is the crucial tool for distributing medical advances to more communities, not just to the most privileged. Healthcare organizations can use a human-centric approach to improve how providers and patients feel by first understanding the challenges faced by them, as understanding your users is critical to improving overall care quality. Population health data management and analytics empowers users and governments with real-time actionable insights from health data.

“To bring changes in the existing healthcare system, we need to see people not as patients defined by illness or impairment, but as individuals on the journey of life.”

Designing public policy

Ewa Luger, Chancellor's Fellow in Digital Arts and Humanities, The University of Edinburgh

"Human-centric approaches to data are critical in helping shape the systems we design, particularly when it comes to public policy. Understanding human motivations, capabilities and practice, and then using that knowledge as a tool to inform data-policy interfaces and engagement practices could transform the way we think about human civic-data interaction.

“Move away from one-size fits all approaches to policy, which favour those already privileged within society, and employ co-produced, human-centric strategies that include marginal views. If you design for the margins then you create systems that speak to a wider set of publics and lead us towards a more inclusive data-driven society.”

Supporting the financial well-being of all

Paul Wallis, Chief Technology Officer, Obashi

"Algorithms increasingly pervade our individual lives and they feed off data. Only through taking a human-centric approach to data can we build solutions which engender trust. This can have a huge positive impact on the financial well-being of citizens, such as credit ratings and banking decisions, where algorithms are used that have a real and lasting effect on people's day-to-day lives.

“There are rich seams of data available to be mined, but when used in isolation the results are rarely in a citizen’s best interests. Having a holistic understanding of a citizen’s life via a socio-technical approach is critical. Understanding the flow of data through the myriad of applications and algorithms, how it is used and altered on its journey, is essential when building a citizen’s profile. But without good governance to ensure this accurate picture is not abused, trust will never be won.”

Enabling local services

Davide Calvi, Founder and Lead Data Scientist, WeAreData

A Civil Society Townhall, Washington DC
A Civil Society Townhall, Washington DC Image: World Bank

I see the greatest impact being in local governments, as they are the closest point to the individuals and are public interest-oriented. Implementing a human-centric approach to data in local governments will allow them to provide services that are needed by their respective communities, build a sense of trust in the system and educate citizens on data privacy matters. All this will then have a snowball effect at a national level both for the public and private sectors.

“The best way to make this happen is by creating (or rebuilding) the trust between citizens and their local authorities. We can build this trust by improving citizens’ data literacy, involving them in the co-creation of new services and being transparent about how their data will be used. Once the trust is there, citizens will then feel empowered to make their own decisions on how to share their data in respect of any organisation.”

Building brand loyalty

Yannis Kotziagkiaouridis, Global Chief Data and Analytics Officer, Edelman Data & Intelligence
“A human-centric approach to data has the greatest potential for impact when we go beyond gathering data for the purpose of creating personalized shopping experiences and begin using it to understand the values and needs of people in the larger context of their lives. The insights gained can then be used by brands to help effect societal changes that people want to see, but cannot accomplish as individuals. In this scenario, significant benefits accrue to the brand (stronger, harder to replicate relationships), to the customer (greater empowerment, especially among marginalized populations) and to society as a whole (positive change).

"Data shouldn’t be characterized as the new oil or gold because it is not best acquired through extraction. Nor should it be considered a currency because it must confer value to others beyond those who hold it. Data should be treated as a mutually beneficial gift. One best given and received from a place of empathy.

"To succeed in this, brands must move beyond transactional data and instead consider people’s hopes and fears. Thus, data initiatives must go beyond trying to understand customers qua their category engagement and instead attempt to view and understand them as fully fleshed out people."

Achieving public health outcomes

Sushant Kumar, Director, Responsible Tech, Omidyar Network

“The greatest impact from a human-centric approach to data will be seen in healthcare – by improving people’s health outcomes and in managing public health. People will be empowered when they are in control of data about their health and can trust the system to provide privacy and agency. These data sets, if interoperable, will be effective at the individual level – across devices, apps and service providers and at the institutional level for hospitals and research organizations. Moreover, public institutions can utilise health data responsibly to inform cutting-edge healthcare research and conduct long-range planning. Together, these interventions will lead to unlocking of societal benefits like never seen before.

“Unlocking societal impact at scale will need a three-layered approach – governance, infrastructure and service layers. Firstly, for the governance layer, a shift in mindsets is necessary – societal benefits from data and privacy can co-exist with the embedded collective governance structures and regulatory guard rails. Secondly, a public-good approach is required to build necessary infrastructure layer of data intermediaries. These data intermediaries will act as trusted fiduciaries for data exchange and stewardship. Thirdly, an innovative service layer will comprise of innovative apps and products. This will disrupt the status quo through entrepreneur-driven interoperable products for individuals and institutions, supported by sustainable business models.”

Ensuring the quality and safety of technology

Lisa LeVasseur, Founder and Executive Director, Me2B Alliance

Image: August de Richelieu / Pexels

“We are already seeing the impact of having a human-centric ‘yardstick’ with which to measure the safe and respectful behaviour of connected tech. Human-centric industry safety standards (that align with or transcend regional regulation) will have a tremendous positive impact on the quality and safety of technology, whether it's commercially or publicly provided.

"Both technology and industry standards development must be recognized as and transformed into multi-disciplinary, radically inclusive and diverse endeavours. Human-centric technology requires a wide swathe of unique, human points of view. We must move toward co-development practices that engage everyday people throughout the process. (Interestingly, connected technology is the very thing that can facilitate such co-development. We can respectfully foster crucial engagement through carefully curated human-centric technology and practices.)"

Maximizing impact in the Global South

João Arthur da Silva Reis, Data Policy Lead, Centre for the Fourth Industrial Revolution Brazil

"A human-centric approach to data use must be adopted as a wide principle, but as any concept under development, it needs to be tested through concrete applications. Use cases must be undertaken and measured thoroughly in order to provide evidence of how this approach can benefit individuals and societies.

“In order to allow the necessary representativity for the concept to be truly global, it is important to experiment it in diverse contexts. In this sense, it is imperative to develop use cases in developing countries across different parts of the Global South.”

Building trust in institutions and relationships

Justine Cassell, Professor and Researcher, Carnegie Mellon University & Inria Paris

Image: Cytonn Photography / Unsplash

"My definition of data is ‘information that passes through the hands of people’ and so a human-centered approach to the generation, management, and interpretation of data is – very simply – what gives data value. There is therefore no industry, region, nor context, in which we can allow data to be treated without keeping in mind the people it came from, and those who will benefit from it.

"Because data comes from people and is destined for people, a relationship of trust is primordial between those that extract and collect data, those who manage and interpret it, and those who use it for ends that are either glorious or nefarious. This trust – like any other kind of relationship – can be strengthened by transparency, predictability, and slow and steady building up of bonds. The more sensitive the data, the more it is essential to move slowly, to reveal not just one's activities but also one's goals, and to invite participation and feedback from the various stakeholders.”

Closing the digital divide in citiesRearranging power dynamicsEnabling a safe and successful OlympicsRedefining the patient experienceDesigning public policySupporting the financial well-being of allEnabling local servicesBuilding brand loyaltyAchieving public health outcomesEnsuring the quality and safety of technologyMaximizing impact in the Global SouthBuilding trust in institutions and relationships

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