In an open letter last month, Richard Bergström, EFPIA Director General, recently invited the EU Competitiveness Council to establish a working group on ‘big data in healthcare’ in order to help advance patient care and support the long-term sustainability of healthcare systems[i].
The letter followed a Presidency policy document entitled “Unlocking Europe’s digital potential: faster and wider innovation through open, networked and data-intensive research” which asked the Council members to consider ways in which to boost innovation using big data[ii].
Demographic changes toward aging societies and rising costs in healthcare mean that more efficient, ‘patient-centric’ services are required for the future and the use of big data in healthcare promises to generate real benefits for patients and citizens in the EU. According to Mr Bergström, the use of big data in healthcare “…can help us understand how to better support patients right across the patient journey and deliver truly-personalised care. It can increase efficiency and effectiveness by showing us which interventions work and why, ultimately leading to more sustainable models of healthcare delivery, based on better patient outcomes.”
So what is big data in healthcare?
The 2014 Organisation for Economic Co-operation and Development (OECD) interim report ‘Data-driven Innovation for Growth and Well-being’ explains how health-related data is created from “Personalised medicine, genomics, new diagnostics and medical imaging techniques and the banking of biological samples”[iii]. Europe itself has a huge resource of relevant data in biobanks, registries and healthcare records and the potential of these to advance healthcare and research is only just being uncovered.
How can healthcare data be used?
Worldwide, health data is growing at a tremendous pace and new ways to measure and store this data will help it to multiply. We also need better ways to use the data for it to be meaningful. The OECD report explains “The better use of large and diverse data sets can contribute to improving population health, prevention of disease, quality and safety of health care, and to generating greater systems efficiencies in healthcare research and innovation.”
A good example of how the analysis of patient data has allowed patients to make more informed choices about their healthcare is in Finland. Here, the analysis of data across the whole cycle of care, from hospital admissions to the prescription of medications, has led to an improvement in the quality of hospitals.
What does the future hold for big data in healthcare?
There are still many questions surrounding big data in healthcare. Two questions due to be addressed in the OECD final report on data-driven innovation to be published later this year are: how can the potential of data and analytics be unleashed to make health care smarter and thus more efficient and patient-centric? And what are specific data governance issues in health care?
Bergström addressed some of the challenges in his letter and demonstrates that industry is keen to work with stakeholders to address these: “One significant challenge is privacy regulation, particularly in the context of the re-use of data in research. We support the need to revise the European legislation and believe that the right balance of individual rights and support for the societal interest in research can be found, but we are not there yet.”
The OECD have also recognised that privacy is a central issue and involving patients and public in a discussion about the benefits and risks of data use and the safeguards in place to mitigate those risks is crucial. The Council’s presidential policy document also highlights the importance of addressing societal challenges such as the “potential long-term impacts on the core values of democratic market economies and the well-being of all citizens.” According to the document, such negative impacts can be addressed by focusing on improving transparency, increasing the empowerment of individuals, by making sure organisations use personal data responsibly and by improving the technology used in privacy protection.
The management of data is also crucial as the presidential paper points out: “Demand-side challenges are related to the capacity of taking advantage of big data. Some of the problems include insufficient skills and competences in data management and analytics. Recent surveys confirm that lack of data management and analytic skills is an important barrier to data driven innovation in areas including science, health care and in the public sector.”