Faced with ageing populations, a rising incidence of chronic diseases and intense budgetary pressures, the challenges to the sustainability of European Member State health systems have never been greater. Moreover, a wide variation in outcomes across the continent is evidence of the inefficiency in healthcare provision. At the same time this offers a significant opportunity for improvement.
It is abundantly clear that there is no single silver bullet for Europe’s complex range of health system problems, but the idea of using big and deep data sources to support the evolution towards outcomes-focused, sustainable health systems, may go a long way towards alleviating much of the pain. A more efficient use of deep level data would doubtless lead to a reduction of “inefficiencies” within health systems, thereby freeing up resources that can then be invested in real innovation and/or solutions that can deliver improved outcomes.
This ground-breaking concept has been taken up within the framework of the Innovative Medicines Initiative, the world’s largest public-private partnership in the healthcare sector. The Big Data for Better Outcomes (BD4BO) programme is focused on catalyzing and supporting the evolution towards outcomes-focused and sustainable healthcare systems in Europe. It seeks to exploit the opportunities offered by big and deep data sources through the generation of a body of evidence designed to inform policy debates.
The BD4BO programme offers a unifying platform and resources for defining and developing enablers of the outcomes transparency evolution. It will provide strategic guidance, project management and expert support (legal, ethical, regulatory) across the various projects under its scope.
Ultimately this will design sets of standard outcomes and demonstrate usefulness, increase access to high quality outcomes data, use data to improve the efficiency of healthcare delivery and help develop digital and other solutions that increase patient engagement.
But beyond the scientific and technical jargon, the BD4BO can explain itself through a couple of practical, understandable examples.
The objective of the BD4BO project on Alzheimer’s disease (AD) is to offer us a clear picture of what outcomes are possible for this disease area and to then ensure that healthcare systems across Europe – and the stakeholders that contribute to them – are reading from the same page when it comes to understanding their relevance.
What it will also achieve is the creation of a strategy that will allow us to gather together real world data sources – that is, information gained from clinical settings, past and present. With this, a clearer picture of the AD environment as it exists can be obtained and this will enable us to identify knowledge gaps. Based on all the data gathered, we will furthermore be able to develop analytical tools that should help us to analyse and thereby improve the value to society of the data on offer.
In the area of haematologic malignancies, an IMI project aims to improve the quantity and quality of data that we can use to assess the value of the various therapies that are on offer to treat these conditions. These will include innovative and advanced therapies, so that each patient can be given the most appropriate treatment.
Ultimately we should be able to set up an outcomes-focused data platform for hematologic malignancies. It will also lead us to establish a pan-EU framework that will offer us the capability to evaluate health outcomes achieved with cell and gene therapies and assess their societal worth.
So BD4BO is an ambitious platform that will revolutionise health systems if we can realise its full potential. To do that effectively, though, we need to exploit the very real opportunity offered through IMI’s public-private partnership framework that allows an effective partnership between payers, patients, physicians, regulators, academic researchers, healthcare decision makers, among others. Working in silos is no longer a viable option if innovation is to be progressed.
In a sense the BD4BO project will require us to go beyond the usual suspects, those fantastic partners who already contribute in a major and commendable fashion to IMI projects. We would like BD4BO to include not only these valuable partners, but also to send out a clear message to other interested parties from health(care) and social security ecosystems that their input would not only be welcomed, it would also be invaluable.0