A ‘sustainable and effective health data ecosystem’ is needed in Europe if the region is to make the most of data for patients and healthcare systems alike.
A new report from RAND Europe concludes that if social and technical challenges to value capture are addressed, health data could provide a variety of social and economic benefits.
Among these the research organisation highlights prospects for data-enabled public health prevention and promotion, and better quality and more efficient healthcare.
From an industry standpoint RAND points to benefits such as new types of research and innovation, enhanced research quality and improvements to pharmacovigilance.
The research project, which was commissioned by EFPIA, aimed to identify and explain health data’s potential and existing benefits and examine the required elements of a supportive health-data ecosystem.
In order to unlock the full value of health data EFPIA said a receptive ecosystem should be established, based on:
* Closer collaboration and coordination between stakeholders
* Stronger data quality initiatives
* Aligning national and EU efforts to maximise the positive impact of recent legislation
* Building of workforce capacity
* Improving public awareness and engagement with health data.
Meanwhile, speaking at the ABPI’s annual conference in London last month, NHS Digital’s director of data science Professor Daniel Ray said there had been “an explosion of clinical data over the last decade, the scale of which we’ve not seen before”.
He told the UK pharma audience: “Data is electronically captured in hospitals in new ways and there’s been a proliferation of this data and that’s set to get bigger.
“We’ve got new types of data, being generated in new ways from apps and wearables and new different types of clinical data being generated on a whole new scale.”
But he acknowledged: “It’s not an easy thing to communicate the benefits of big data use to the man on the street.”
Data protection legislation
New European rules to address data privacy concerns are set to come into force in 2018, but it remains to be seen how the General Data Protection Regulation will be implemented.
EFPIA has already voiced its concerns that the regulation’s flexibility could lead to a fragmented use and exchange of health data and that it may not facilitate responsible use of data.
The trade association said: “Robust and harmonised European rules on the processing and use of patient data are essential to unlock the full value of health data at scale and at pace.”
