What could be wrong with improving patient outcomes, public health and R&D efficiency? And, if you could do these things, why wouldn’t you? These were the questions that led EFPIA to commission a report from RAND EUROPE, which has been published today.
We asked RAND to look at the literature on health data, as it is widely-accepted that better use of health data will certainly yield the benefits described above. They confirmed the prevailing view, but also went further in describing how some of these benefits could be realized, for example by using healthcare data to identify previously undetected disease patterns in the population. The report makes a compelling case for the benefits of health data and underlines the need to think in terms of a health data ecosystem, where data from many different sources can be connected and used by a range of different stakeholders committed to advancing healthcare.
There are many successful projects which highlight the potential of using health data and this report lists many of them. In addition, it highlights the reasons why, all too often, we fail to move beyond the project stage. It is an interesting assessment that includes familiar problems such as data access, interoperability and the lack of a digitally-skilled workforce for large-scale implementation of digital programmes. These are problems that can only really be remedied by investment over the long-term in infrastructure and digital training of healthcare professionals. Making these investments requires health systems to think strategically and some are doing so, including the EU’s next President, Estonia.
The report’s reflection on the workforce highlights a distinction between solutions which require money and patience, and those where the resources needed are trust, dialogue and transparency. It points in particular to the interests of the different people and organisations that hold, analyse and generate data and how these interests lead them to sometimes oppose the data-sharing that is essential to a viable health data ecosystem. The evidence suggests that many support better use of health data, but they need to be confident about the uses and benefits of this data and have an underlying sense of the fairness of the transactions involved. The report makes it clear that “public awareness acceptability and engagement” are key. The word “engagement” is particularly interesting. Citizens should be actively engaged in an enterprise which requires their support but will also enhance their lives. After all, it is their data.
The report’s message to policymakers is best captured in the section dealing with data protection. With new legislation coming into force in 2018, the EU has a great opportunity to put in place a harmonized legal framework which will support the further development of the health data ecosystem and to provide the right balance of flexibilities and safeguards to enable stakeholders to build collective solutions.
The RAND report confirms the value of health data and provides a precise but comprehensive analysis of the next steps.1