Published on May 4th, 2016 | by Elaine Ding and Daniel Castro0
European Policymakers Should Do More to Pursue Data-Driven Medicine
Data-driven innovation is rapidly transforming the medical field by helping researchers make important advances in science, enabling physicians to develop and use innovative diagnostics and treatments, and allowing policymakers to improve health care quality and costs for millions of individuals. The Center for Data Innovation recently hosted a panel discussion that brought together leaders in medical research, medical regulation, and pharmaceutical development to discuss the future of data-driven medicine and how European policymakers can support health data research initiatives. At this event, panelists noted that although European policymakers have taken some initial steps towards facilitating data-driven medicine, more should be done to unlock innovative uses of data in health care and harmonize data practices across Europe.
One of the biggest challenges in medicine is determining how a diverse set of factors, such as genetic background, lifestyle, environment, and eating habits, can affect an individual’s health. As information technology has become more pervasive, researchers can now collect and analyze a wide variety of data that can deliver insights into how different factors affect health. Researchers can now study data from a variety of sources, including electronic health records, mobile health apps, wearable devices, and even social media, to better understand the causes and correlations among between different factors and diseases. Even data not directly health-related can be useful to researchers. Information on use of sports clubs, what types of groceries people buy, and use of public transportation can help researchers gain a better understanding of overall health. In the long term, all of this data can help researchers create better predictive models to diagnose and treat patients more effectively.
In the short-term, this increased flow of valuable data is creating immediate opportunities to improve patient care. Data allows health care professionals to assess health care quality, safety, and effectiveness of providers and hospitals. In addition, better data can be used to better assess insurance providers, coordinate care, and identify potential cost-saving. Health care providers can also use patient data to diagnose and treat patients faster, more accurately, and with more convenience. Utilizing data can help identify new medical needs, track outcomes in patients, and gauge the effectiveness of treatments provided.
Despite the indisputable benefits of data-driven innovation in medicine, it is still in its early stages. The big question for the policymakers who are shaping health data research initiatives is how to enable beneficial uses of the data. Data needs to be made available to the right people at the right time in the right format. Some of Europe’s most notable examples of medical data sharing, such as the European Commission sponsored Human Brain Project which is using big data to study neuroscience and brain-related medicine, are the exception, rather than the norm. Too often, the conversation on health data focuses disproportionately on privacy and overshadows other important issues. Dr. Terje Peetso, a programme officer in the health and well-being unit of the European Commission DG Connect, noted that while data privacy is an important issue for health data, data integrity and completeness, is equally as important.
And when regulators have focused on privacy, they have often gotten it wrong. For example, while the General Data Protection Regulation (GDPR) recognizes that health research data has an intrinsic value to society that sets it apart from commercial data, it fails to specify how the data should be shared. Dr. Jacqueline Whyte, an expert with Science Europe, says that EU policymakers will need to address this issue in order for Europeans to reap the full benefits of data-driven innovation in health care. As EU member states implement the GDPR, they should work closely with the medical research community to ensure that data protection rules do not impair legitimate medical research.
Medical research is multidisciplinary and cross-border, and more reforms are needed to ensure that data protections regulations across Europe encourage, and do not impede, health care innovations. Policymakers should work to ensure that medical researchers, practitioners, and patients have timely and affordable access to the data and technical resources they need. Working together, Europe’s public health systems, independent medical research centers, and pharmaceutical companies can use data-driven innovation to reduce health care costs, improve diagnosis and treatment, and deliver personalized health care.
Image credit: Ivan Dimkovic