Data without borders
Authors: None The Lancet Digital Health
Journal: The Lancet Digital Health (2019)

On July 10, the House of Commons Science and Technology Committee released a report criticising the lack of political leadership in digitisation across all sectors of the UK Government. One of the reported shortcomings is the absence of a unified platform to improve data sharing across different public departments that could help improve the efficiency, cost-effectiveness, and transparency of government services. As a case study, the report highlights Estonia's single unique identifier system, which ensures that all data are shareable between departments through blockchain technology, leading to the establishment of the world's first nationwide electronic health-care record and e-prescription system. As every citizen can view their data held by the government, as well as which departments have accessed their data, and why, Estonia strives to establish trust between citizens and the state. Furthermore, Estonia has started exchanging digital prescription data with Finland, enabling the first cross-border flow of data in the EU. A cross-sector data sharing system is of particular benefit in low-income and middle-income countries. A promising example emerges from India's Aadhaar personal identification programme. Like Estonia, the Government of India has been offering unique biometric identification to all 1·2 billion of its citizens since 2010, generating and monitoring health and social data including electronic health records. However, critics of the Aadhaar programme argue that it has left sensitive data vulnerable and subject to data breaches; yet, in 2017 the Supreme Court ruled that the public health benefits of Aadhaar outweighed privacy concerns. The court has, however, reduced the scope of the programme, making the scheme non-mandatory for banking and mobile phone services and encouraging private companies to purge existing Aadhaar data. Other countries should consider these measures carefully before adopting a similar approach. The Indian Government has recently drafted its National Digital Health Blueprint, which is currently under public consultation. The document describes the need to establish infrastructure for the seamless exchange of data and advocates interoperability as a prerequisite for the development of integrated digital health services. This raises the possibility for more reliable and extensive collection of health data and accompanying social data, which has the potential to improve the planning and delivery of public health interventions. The recent Lancet Commission on tuberculosis also highlights the need for data sharing from the Ministry of Health reports, donor–agency operating plans, private health systems, social media, and other sectors of government, to increase the efficiency and scale of tuberculosis programmes in low-resource settings. The Commission anticipates that integrated data platforms will enable detailed real-time models of tuberculosis to predict changes in patient demand and improve resource management for diagnosis and patient care. However, the authors acknowledge that specialised equipment, interoperability standards, coherent data collection, and regulatory oversight are essential in implementing data sharing for public health. Linking datasets from different sectors, including private industry, has also helped address complex health system problems and improve health outcomes for populations. In 2013, the Government of Côte d'Ivoire consented to the release of anonymised mobile phone data to develop a model for monitoring disease outbreaks. The need to operationalise the health effect of digital information and invest in data sharing between private industry and health care was highlighted recently in The Lancet Digital Health. Becky Inkster and colleagues describe how linking financial data to electronic health records could be leveraged to support the physical and mental health of populations. Many barriers to cross-sector data sharing have been identified by policy makers and others, including privacy concerns, restrictions on the export of patient data, and lack of access to advanced technology in limited-resource settings. Despite the challenges, there is growing evidence that cross-sector data sharing, if done carefully and transparently, will lead to improved health outcomes for populations. As such, although this could be a daunting task for governments, data sharing across sectors should be made a priority. Genuine, long-lasting government support is necessary, both in terms of political and financial commitment, if quick progress towards bridging population health and clinical medicine for better health care is to be achieved. A first step would be open communication between governments, academics, and private industries to develop unified platforms for sharing and analysis of diverse data. For the UK House of Commons Science and Technology report see https://www.parliament.uk/business/committees/committees-a-z/commons-select/science-and-technology-committee/news-parliament-2017/digital-government-report-publication-17-19/For the press release on Estonia exchanging digital prescription data with Finland see http://europa.eu/rapid/press-release_IP-18-6808_en.htmFor more on the data vulnerability of the Aadhaar scheme see https://time.com/5388257/india-aadhaar-biometric-identification/For more on the Government of Côte d'Ivoire's consent to the release of anonymised mobile phone data see http://arxiv.org/pdf/1306.4534v1.pdf For the UK House of Commons Science and Technology report see https://www.parliament.uk/business/committees/committees-a-z/commons-select/science-and-technology-committee/news-parliament-2017/digital-government-report-publication-17-19/ For the press release on Estonia exchanging digital prescription data with Finland see http://europa.eu/rapid/press-release_IP-18-6808_en.htm For more on the data vulnerability of the Aadhaar scheme see https://time.com/5388257/india-aadhaar-biometric-identification/ For more on the Government of Côte d'Ivoire's consent to the release of anonymised mobile phone data see http://arxiv.org/pdf/1306.4534v1.pdf Building a tuberculosis-free world: The Lancet Commission on tuberculosisTuberculosis can be treated, prevented, and cured. Rapid, sustained declines in tuberculosis deaths in many countries during the past 50 years provide compelling evidence that ending the pandemic is feasible. Yet this disease—which has plagued humanity since before recorded history and has killed hundreds of millions of people over the past two centuries—remains a relentless scourge. In 2017, 1·6 million people died from tuberculosis, including 300 000 people with HIV, representing more deaths than any other infectious disease. Full-Text PDF Improving insights into health care with data linkage to financial technologyThis Comment is a call to action for financial technology providers, health-care professionals, and research scientists to work together to better represent the complementary nature of health care and finance in real world and research settings. We argue that a better understanding of individuals' financial data could help health-care professionals improve care, and that linkage to information about mental and physical health could create more holistic financial support systems. Full-Text PDF Open Access