Accelerate the construction of a self controlled and trustworthy data space for life and health
2026-04-17
The outline of the 15th Five Year Plan points out the need to deepen the development and utilization of data resources, coordinate the promotion of public data openness and authorized operation, improve the responsibility system for the development and utilization of public data resources and the compliance mechanism for the use of personal data, and promote the development and openness of enterprise data and industry data. Life and health data is a core data resource that reflects human life activities, health influencing factors, and their interactions, covering multiple fields such as genomics, medical health, public health, lifestyle, environmental meteorology, scientific literature, and drug development. As an important fundamental strategic resource of the country, this type of data is the key to enhancing the global competitiveness of China's life and health research and biopharmaceutical industry. Its deep development and utilization can effectively promote scientific research and industrial innovation, cultivate new formats, new models, and new economic growth points, and inject strong impetus into the development of the biopharmaceutical industry and health care. European and American countries have been early in developing and utilizing high-value life and health data. By building integrated information systems, open multi-source data normalization exchange platforms, and dynamic authorization mechanisms for trusted and secure environments and data source units, a multi-dimensional and continuous high-value data resource pool has been formed. Significant achievements have been made in basic research, clinical diagnosis and treatment, new drug development, and other fields, laying a solid foundation for the rapid development and disruptive innovation of AI For Science and AI pharmaceuticals. Taking the UK Biobank as an example, it integrates large-scale clinical, multi omics, environmental, and lifestyle data with high standards through relevant facilities and mechanisms, supporting targeted collection and authorized use for cutting-edge research. It has discovered more than 100 drug targets and brought huge industrial returns, playing an important supporting role in epidemic response, life science basic research, and innovation in the biopharmaceutical industry. The United States has established multiple national and industry level life and health databases with global influence, covering multiple dimensions such as genetics, clinical practice, public health, and drug research and development. For example, the National Center for Biotechnology Information (NCBI) in the United States is the world's largest public bioinformatics resource platform, led by the National Institutes of Health (NIH). At the same time, European and American countries regard life and health data as a national strategic resource, and maintain their leading position in the global biopharmaceutical industry through data blockade, technological restrictions, and other means. In 2025, the National Institutes of Health (NIH) in the United States announced a ban on China's access to its core biomedical databases, including multiple gene and cancer research related database resources, in an attempt to limit China's life sciences and biopharmaceutical industries to the lower end of the value chain. This urgently requires us to accelerate the construction of a self controlled and trustworthy data space for life and health, in order to promote the development and utilization of life and health data. The Trusted Data Space for Life and Health is a specialized data circulation and utilization infrastructure and value co creation application ecosystem built based on the overall framework of the National Trusted Data Space, aimed at the field of life and health. It is also an important component of supporting the construction of national data infrastructure and implementing the Action Plan for the Development of Trusted Data Space. Currently, China is in a critical period of transitioning from a data power to a data powerhouse. The country has introduced multiple policies to accelerate the construction of data infrastructure and systems, activate the potential of data elements, and build new competitive advantages for the country. The National Data Administration has issued the "Action Plan for the Development of Trusted Data Space (2024-2028)", proposing to vigorously cultivate trustworthy data spaces for industries such as finance and insurance, commercial logistics, medical and health, meteorological services, spatiotemporal information, and carbon footprint management, and empower the integrated development of the primary, secondary, and tertiary industries. The Fourth Plenary Session of the 20th Central Committee of the Communist Party of China explicitly stated in discussing the deepening of digital China construction that it is necessary to "deepen the development and utilization of data resources" and "strengthen the efficient supply of computing power, algorithms, data, and other resources". The outline of the 15th Five Year Plan proposes to build high-quality datasets for fields such as energy, transportation, manufacturing, education, health, and finance. At the same time, the country advocates making full use of new technologies such as artificial intelligence and big data to accelerate the construction of life and health databases, improve the efficiency of pharmaceutical research and development, and enhance the level of medical care. These measures will promote the development and utilization of life and health data in China to a new stage, effectively enhance the overall efficiency of the national innovation system in the fields of life sciences and biomedicine, strengthen national security capabilities, and accelerate the construction of life science centers with global influence. However, life and health data have strong specificity and significant differences from industry data such as transportation and finance. The biopharmaceutical industry and life science research still face many unresolved challenges in the process of data development and utilization. Firstly, data resources are scattered and difficult to aggregate and integrate. Life and health data in our country are scattered among medical, scientific research, government, enterprises and other units, with inconsistent standards, uneven authenticity and completeness of data, resulting in difficulties in data acquisition and utilization, and high governance costs in the later stage. At the same time, due to the protection of residents' personal information and the asset income of data holding institutions, data holding institutions are afraid or unwilling to remit. The second issue is that the total amount of data is huge but the dimensions are insufficient, and the value of the data needs to be improved. Currently, China's life and health data resources are mainly concentrated in clinical medical data, mainly electronic medical records, with limited value. The research on major diseases and the development of innovative drugs cannot be separated from strong correlations and multidimensional personal life and health data such as genes, proteins, clinical, meteorological environment, and lifestyle, which often require continuous years or even decades. However, due to the lack of benefits and incentives based on personal data, residents have low participation and high dropout rates, making it difficult to sustain multidimensional data collection and integration. Thirdly, it is difficult to authorize industrial utilization data. Life and health data belong to sensitive personal privacy data, which also involves the income of data source institutions. The same set of data will involve the privacy and rights protection of multiple subjects. When applied in the industry, separate or combined authorization and consent from individual residents, enterprises, public institutions and other data source institutions are required. Due to the lack of unified facilities and mechanisms to support it, these data are enclosed in the information systems of various health service institutions, making it difficult for authorized residents to carry out authorization due to their lack of knowledge of the data. The difficulty of multi-party collaborative authorization is also high, and the organization and coordination costs, long cycles, and low efficiency of industrial compliance data use hinder the empowerment of high-value life and health data for the development of biomedicine and emerging industries. To solve the above problems and promote the development and utilization of life and health data in China, it is necessary to establish a trustworthy data space for life and health under government guidance and management, and build an integrated infrastructure for life and health big data. According to unified standards, rules, and interfaces, the fragmented data generated by various levels and types of medical and health service institutions such as hospitals, physical examination centers, public health institutions, third-party inspection centers, medical insurance settlement institutions, scientific research units, and health service enterprises will be integrated into a unified platform to form a multi-dimensional, continuous, and standardized high-value data resource. High level security technologies or facilities such as privacy computing, secure sandboxes, and confidential data rooms will be used to enhance the credibility and control capabilities of highly sensitive data; By relying on a trusted data space, the operating agency categorizes and organizes data according to individual residents and data source institutions, allowing relevant entities to authorize medical institutions, research institutions, and biopharmaceutical and health service enterprises to develop and utilize data under legal and compliant conditions, and to solve data exchange compliance problems through innovative pathways; Support individual residents and data source institutions to query and apply their own data and continuously obtain benefits, ensuring the formation of sustainable data value co creation effects. This measure complies with the requirements of national laws and policies. The Personal Information Protection Law clarifies the right of individuals to know, decide, access, copy, and transfer their information. The "Opinions of the Central Committee of the Communist Party of China and the State Council on Building a Data Infrastructure System to Better Play the Role of Data Elements" and the "Action Plan for the Development of Trusted Data Space (2024-2028)" both propose the establishment and improvement of mechanisms for personal data ownership authorization and compliance utilization. It can be seen that creating a trustworthy data space for life and health not only meets the requirements of national laws and policies, but also is an important breakthrough point in solving the difficulties of developing and utilizing life and health data. Among them, 'counting to the people' is an important component of the trustworthy data space for life and health. It refers to opening a personal data account for each resident in the trustworthy data space of life and health, integrating the medical and health data generated by various institutions connected to the space into the personal data account, allowing residents to independently control the authorization, use, and circulation of data, and synchronously transferring the ownership, use, and revenue rights of data to residents while balancing the interests of all parties. The significance of "returning data to the people" is significant: firstly, it ensures compliant applications, and conducting data authorization through "returning data to the people" is a necessary path to ensure privacy protection and achieve compliant utilization; The second is to enhance the value of data by organically connecting the data that was originally aggregated by type, industry, and other dimensions with individual residents as the dimension, forming higher value data that reflects the process of residents' health changes and the underlying mechanisms of health and disease occurrence and development; The third is to stimulate participation vitality, help residents grasp their own health status through health data, obtain accurate health services, and obtain data asset benefits, thereby mobilizing residents' enthusiasm to maintain continuous connection with research institutions and providing effective support for dynamic collection of personalized data. The trustworthy data space for life and health is not only a technological innovation, but also an innovation in the people-centered governance concept, marking a paradigm upgrade from "institutional data" to "national data" and from "data resources" to "data assets". This measure will promote the life sciences to move towards a new paradigm of AI for Science, which is conducive to integrating existing clinical medical data and personalized collection of multidimensional life and health data from residents and data source institutions according to research needs, achieving large-scale supply of high-value data, solving the data shortage problem faced by AI research, and promoting the transformation of life and health research from a "passive research mode" that relies on existing data to an "innovative research mode" that actively designs solutions and generates data on demand, greatly expanding the breadth, depth, and accuracy of research. Helps drive the digital transformation and upgrading of the biopharmaceutical and health industries, activating the trillion level industrial ecosystem. In cutting-edge fields such as rare disease research, innovative drug development, and precision medical services, industries can use this space to achieve compliant data collection and application, significantly reducing the threshold for data acquisition and utilization; At the same time, new business models such as life and health digital brokers, data merchants, and data trading are emerging, strengthening traditional business models such as precision health management and smart elderly care, and promoting high-quality development of the life and health digital economy. It will help China break through the bottleneck of data development and utilization, accelerate the construction of a database of life and health data resources, improve people's health level, and break the data blockade of European and American countries, helping China occupy the international high ground in the field of life and health. Author: Jing Ruifeng (Deputy Director of the Greater Bay Area Bioinformatics Center at Guangzhou National Laboratory)