Data sharing is key to innovation in health care

Health is a highly precious state of life, which enables individuals to fulfill themselves, unlimited by anything but their will and environment. Maintenance of health is a costly pursuit, as health-care spending is projected to reach over $10 trillion, nearly 10% of global GDP, by 2022. A swift upward trajectory in global health spending is particularly noticeable in low- and middle-income countries, where health spending is currently growing, on average, 6% annually, compared with 4% in high-income countries.

A series of innovations have driven better health for people, including hygiene, infectious disease prevention, precision diagnostics, therapeutic devices, biological pharmaceutical compounds, and minimally invasive surgical procedures.

However, chronic diseases have never been so common. Globally, the number of people living with diabetes has risen from 108 million in 1980 to 422 million in 2014 and is now rising even more rapidly in low- to middle-income countries. Vascular diseases are the number-one cause of death: 17.9 million people die annually from cardiovascular diseases, representing 31% of all deaths globally, and over three-quarters of these deaths occur in low- to middle-income countries.

In high-income countries, nearly 50% of citizens suffer from chronic disease while the other half are diagnosed with cancer during their lifetimes. The current rise of non-communicable diseases (NCDs) is associated with lifestyle choices—tobacco use, unhealthy diet, obesity, physical inactivity, and harmful use of alcohol—and environmental factors, yet NCDs could be largely prevented by early detection and appropriate counseling and management.

To face this challenge, health-care stakeholders—individuals, physicians, payers, policymakers, and health technology companies—must converge on digital platforms to connect, combine and share data, which will allow for global innovation of care that includes social and environmental determinants of health. Such platforms will allow stakeholders to capitalize on knowledge about health factors both at the individual and population level.

These data-based approaches will lead to a new human-centered view of health care that includes personalized prevention and support. “Knowledge is the only good that multiplies, when you share it,” as Austrian writer Marie von Ebner-Eschenbach put it, and sharing among patients, caregivers, payers, and regulators will not only provide information to support better decision-making and service, but will also expand global knowledge of health and life science—leading to sustainable and accelerated progress. By 2030, the life sciences industry will increasingly shift from reactive to proactive medicine, enabled by personalized health. This new era will encompass a holistic view of the citizen, where health will become a core value of daily life and cities. Digital platforms will play a key role in this transformation.

Quality of life is the most important benefit citizens expect from health-care technology breakthroughs. In a recent Frost & Sullivan report, it is acknowledged as the top priority for 29% of survey respondents and in the top three priorities for 62% of respondents. Prevention is among the top-ranking expectations as well, identified as a top-three priority for 56% of respondents. Preventive health plans are perceived as having the highest direct impact on people’s health. Patients also expect higher autonomy through better information and the ability to dispense treatments at home.

This builds a strong link between health and cities. More and more cities in the world are moving toward a new “city experience,” where the interactions between citizens and city services are transformed. These cities will enter into the platform era by leveraging data and technology to create more efficient living environments, improve sustainability, connect citizens to decisions by sharing information with the public, and improving the quality of government services. Achieving this goal requires a harmonious development in all dimensions of city experience: governance, education, housing, mobility, infrastructure, connectivity, innovation, energy, and health care— a core part of this holistic city experience.

The quality, reliability, and completeness of health-care infrastructure will be a fundamental factor for the global development of cities. As smart cities create a more valuable citizen experience, “cities of health” will become more attractive. In the project Virtual Singapore, intelligent 3D models were set up to improve the experience of residents, businesses, and environment by capturing all aspects of the city. By connecting the dots across citizens, thinking about experiences and connecting the virtual and real world, smart cities reveal sustainable urban solutions to maintain the health of their growing and aging populations.

A new approach will be required to the design of cities with a new mindset for operating them. Mobility and transportation will be planned to preserve the health of the residents, social services will be sized based on neighborhood health indicators, and environmental exposure and air quality will be crossed with patient health to generate new insights into emerging risk factors and to trigger personalized prevention recommendations. Emerging diseases are monitored continuously to detect clusters of cases and their link with infectious agents or pollutants.

Security and privacy of health information are a top priority. Regulations on personal health data will be progressively harmonized worldwide. As the patient is positioned at the core of their own health journey, the right to access and control personal data becomes more crucial than ever. At the same time, health-care stakeholders require increased sharing of health data to build collaborative intelligence and expand their understanding of health-care activities. The future of health care is shifting from the care of an individual to the care of a population and new data continuity offers opportunities for service and quality improvements. A data-enhanced platform of care enables siloed data sources to be integrated and contextualized within the health environment. Platforms, therefore, catalyze collaboration among diverse stakeholders and allow the setup of human patrimony in every country.

Different approaches have been undertaken to collect patient data at the scale of a population. In Denmark, the entire country is a cohort scrutinized by integration of health information sources from claims, electronic health records, or genomic analysis. In the US, the largest-ever cohort—called “All of Us”—has been launched to gather data about more than one million people, in order to explore the potential of precision medicine while taking into account individual differences in lifestyle, environment, and biology. Anonymization of data has been a key enabler for data sharing and will contribute to opening the data economy.

There are no commonly accepted data sharing standards at this stage, although these will be required to build the needed trust at a societal level. A first meaningful step in this direction has been made in Europe with the European General Data Protection Regulation, which frames the definition of anonymization to reduce the risk of reidentification. Technological solutions to the problem, such as blockchain, exist but they are not sufficient by themselves to build trust. New processes and institutional approaches are needed to allow sharing of highly sensitive data. While models of data sharing have yet to be developed, collective data intelligence will become a cornerstone for continuous learning and an improving health-care system.

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