The new responsibility in dealing with health data

How can we make health data a global public good?

Von Siddhartha Jha & Stefan Germann

New technologies are emerging and converging to create a new infrastructure that acts as a central nervous system of the global community, allowing data to be shared instantly across regions, borders, and oceans. The current and future convergence of big health data - from personal, clinical, and environmental - combined with artificial intelligence (AI) offers unprecedented opportunities for public health. Pooling and sharing this data has the potential to reduce the barriers to accessing diagnostics and care, making it available to all. If we act now, we have the opportunity to create a whole new health data ecosystem as part of the digital revolution, enabling it to become a global public good. If we don’t, we risk that self-interested groups take advantage and use this data for commercial gain, and in the worst case, for malicious purposes.

How can we make health data a global public good?

Data is being generated from sources such as wearable devices, clinical trial data, environmental and geospatial data, and mobile applications. Photo: Tansania © Fondation Botnar

 

Despite making significant progress in health services, there are still notable imbalances in terms of equitability and access to care. There is currently a worldwide shortage of 7.2 million health workers, a figure that is set to be approximately 18 million by 2030. (Global strategy on human resources for health: Workforce 2030. WHO 2016) At the same time, according to the World Bank and the International Telecommunications Union, more than 93% of the world’s population is covered by mobile phone networks, with more than 60% of people living in low- income countries having a mobile phone subscription. (International Bank for Reconstruction and Development / The World Bank. 2018)This has created an enormous opportunity to leverage these technologies - and their uptake - to rebalance equitable access to diagnostics and care, thus aiding in bridging the capacity gap. Where current debate focuses on the opportunities that technology and the Fourth Industrial Revolution bring, we have a responsibility to move from talk to action and harness the potential now.

As the adoption of mobile phones becomes more widespread in our everyday lives, costs are declining, leading to them becoming essential commodities within both high-income and low- and middle-income countries (LMICs). Nigeria is expected see an additional 50 million mobile phone users by 2025, with many young Nigerians - 60% of Nigerians are 24 or under – driving this growth. It is this demographic that can truly spearhead the transformation.

Adolescents as initiators and champions

Research shows that adolescents are open for adopting digital solutions for managing their health, representing a significant group that is easily excited by the opportunity to use any type of technological intervention to obtain health-related information. (Whittemore R. et al., 2013) Furthermore, a recent report by PWC also shows that younger generations are more open to proactively supporting the use and development of AI, with 55% of 18-24 years old’s being willing to use an intelligent healthcare assistant. (PwC 2017)

Digital technologies have profoundly changed childhood and adolescence, with the internet and access to it becoming integral to the lives on young people globally. UNICEF’s The State of the World’s Children — Children in a Digital World report showed that young people (aged 15-24) are the most connected age group with 71 percent being online worldwide. Children and adolescents under the age of 18 account for an estimated one in three internet users around the world. (pdf: UNICEF 2017) They are key drivers of a new radical sharing economy.

Both the global health community and national and regional key players should think of adolescents as more than just a mechanism through which this transformation of healthcare happens. They are also active participants in determining their own needs. While many NGOs and private foundations frequently focus programming and funding on the first thousand days of life, adolescents have often been neglected. This age group is critical when looking at health and wellbeing where unhealthy behaviours and lifestyle choices are often made that influence developing chronic conditions and mental health problems during adulthood. (The AstraZeneca. Young Health Programm) With a focus on adolescents as the initiators and champions, we can not only speed up the transformation of modern healthcare, turning health data and big data into a global public good, but also an opportunity to address the imbalance of adolescent health neglect.

Digital health today

This leap forward in technology over recent years presents a huge potential for AI and big data in adolescent health already today. For example, Fondation Botnar is working with UNICEF Romania to empower community workers in the Bacau region in Romania with a digital application called Aurora. The application can collect data, analyse it, and then prescribe services - thereby helping the local authorities to better understand the comprehensive needs of children. Furthermore, through Fondation Botnar’s collaboration with Ada, an AI-powered health platform that helps people around the world understand their health and access appropriate care, we are supporting the translation of the mobile digital AI solution into both Romanian and Swahili, and adapting to the Eastern African context - giving more than 100 million people in Sub-Saharan Africa access to quality, timely diagnostics that can contribute to better health outcomes.

With the launch and uptake of these new technologies, we are experiencing a ‘data explosion’. This data is being generated from sources such as wearable devices, clinical trial data, environmental and geospatial data, and mobile applications. 90% of the data in the world today was generated over the last two years. (IBM Consumer Products Industry Blog. 2013) From this data, we can see what is happening on a granular level to enable precision public health and medicine. (Precision Public HealthAdditionally, we can aggregate data to see the trends and patterns amongst populations. For example, the World Health Organisation’s (WHO) recent epidemic intelligence software gathers huge amounts of data in the form of rumours of suspected outbreaks from a wide range of formal and informal sources. When combined with AI algorithms, machine learning, and predictive analysis this enables faster and more efficient responses to disease outbreaks. (WHO. Epidemic intelligence - systematic event detection)

While use of AI has evolved at an exceptional pace in high-income country contexts, it’s realisation in resource-poor settings remains considerably limited. (Wahl B, Cossy-Gantner A, Germann S, et al, 2018) As stated at the UN’s Secretary-General’s recent High-Level panel of Digital Cooperation, digital technologies will help speed up progress toward achieving the Sustainable Development Goals (SDGs), only when we have full cooperation across domains and borders. (United Nations 2018) The panel’s contributions to the broader public debate on the role of technology in international development, demonstrate a positive stride in right directions toward securing an inclusive digital future.

The time for action

In 2018, the Seventy-First World Health Assembly, passed a digital health resolution that recognises the potential of digital technologies to advance the 2030 agenda toward achieving the Sustainable Development Goals (SDGs). (WHA 71.1, 2018) The resolution stressed the potential of health data, acknowledging the experience of countries and organisations who are already beginning to use the evaluation of health data as a public good. At the same time, it also raised several issues around data security, ethical and legal issues, quality data, and data protection as core points that need to be addressed.

As noted, we are generating huge amounts of data, and organisations and individuals are already beginning to use this for good. However, we now have a situation where dispersed data sources are in silos that are unable to talk to each other. This makes the data unusable and worthless in a global way of thinking. One of the biggest challenges we face is not solely collecting data but using partnerships to ensure that people can share their information with confidence. The importance of cooperation is paramount to truly making data collaborative. We also need to ensure that policy makers, especially in LMICs, work toward creating a healthy data ecosystem, which on the one hand guarantees security and privacy, and on the other makes this data available to local innovators to create value for society using AI applications for health and education.

At Fondation Botnar, we see our role as being an informed convener. We understand the potential, and we also understand the need for global cooperation. One of our core values is partnerships with purpose. We want to bring partners together, sharing the same mindset of harnessing this data for the public good to help create a whole new data ecosystem.

Currently in the sphere of health data there are three emerging models (Figure 1). The first, is private commercialisation, whereby self-interested parties work on furthering health data for profit, which risks increasing inequality. The second, is individual citizens-owned and selected health data use via cooperative models. MIDATA.coop is a good example of this where it allows users to gather all their different health-relevant and personal data in one secure place, allowing them to provide access to their data across cooperatives with friends or physicians. It is citizen-owned, user-centric, not for profit, and ultimately transparent. The third possibility is one that is not necessarily mutually exclusive to the second model but could actually be an overarching model. This is the case for depersonalised health data acting as a global public good, whereby we can aggregate data gathered from this ecosystem to gain a clearer insight into global health, equipping us with the knowledge to both tackle some of the biggest health issues of our time, and aiding in shifting away to a more proactive system of health.

 

Figure 1. Three emerging models of health data governance


At Fondation Botnar, we also want to use the benefit of our geographical placement. From its direct democracy, to security and humanitarian traditions that are trusted, to widely appreciated institutions such as the Red Cross and Red Crescent Movement, Switzerland has a strong tradition of creating global public goods. This history has led to a convergence of NGOs and international organisations being clustered through the country, creating a hub of international thinking and planning. Switzerland’s neutrality has also allowed it to breakthrough where others have failed and is therefore well-positioned to function as a broker for the collaborative revolution in making health data a global public good.

Ultimately, while there is a significant opportunity to leverage AI and health data for global health, especially in LMICs, nothing is guaranteed unless we create the needed global regulatory environment for health data to become a global public good.

 

Fondation Botnar:
Fondation Botnar is a Swiss foundation established in 2003 with the core purpose of improving the health and wellbeing of children and young people in growing secondary cities around the world. The foundation works to achieve this by investing in solutions that leverage artificial intelligence (AI) and digital innovation. www.fondationbotnar.org

 

Ressources

 

Siddhartha Jha & Stefan Germann

Stefan Germann is the CEO of Fondation Botnar, a Swiss foundation established in 2003 with the core purpose of improving the health and wellbeing of children and young people in growing secondary cities around the world by investing in solutions that leverage artificial intelligence (AI) and digital innovation. @FondationBotnar, @GermannStefan

 Siddhartha Jha is the Artificial Intelligence (AI) /Digital Program Manager for Fondation Botnar, a Swiss foundation established in 2003 with the core purpose of improving the health and wellbeing of children and young people in growing secondary cities around the world by investing in solutions that leverage artificial intelligence (AI) and digital innovation. @FondationBotnar, @Jsidloc

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