EU must prioritise patient engagement in health research 

by | 26 Jun 2019

The European Commission, health industry organisations, and patient groups are busily crafting a bold new public-private partnership. Citizen and patient involvement will be a key focus. With plenty of existing tools to help make patient engagement (PE) happen, now is the time to prioritise patients in all projects. 
The Innovative Medicines Initiative has been a major success. For more than 10 years, it has served as a bridge between EU funding and the medicines sector. Together, public and private organisations have worked together – with the backing of the world’s largest health PPP – to unblock bottlenecks in medicines development. 
IMI 2, which ends in 2020, has a budget of more than €3 billion. The Synergist is an active participant in the IMI Paradigm project co-led by the European Patients’ Forum and EFPIA. Paradigm’s mission is to provide a framework for patient engagement and demonstrate the ‘return on investment’ for all players. 
Now health stakeholders in Brussels are looking beyond 2020 to IMI’s successor. While it’s still in gestation, early reports suggest the new PPP will cast the net wider than IMI and IMI 2. More than focusing on medicines development, it will extend its remit to include medical technologies – devices, diagnostics and digital tools.  
With a working title of ‘PPP Health’, it has tentatively narrowed its focus to five key priority areas: precision medicine, integrated care, digital health, value-based healthcare, and citizen and patient empowerment. 
This is hugely encouraging. It reflects the growing consensus that it is essential to involve people in improving their own health and wellbeing, and in finding new solutions to their health challenges. 
There are two key points to remember. First, patient engagement does not belong in a silo. PE must permeate all aspects of health research and innovation. It should be the default setting that forms part of each and every priority for the future of healthcare. 
Second, it is fantastic to see citizens and patients featured in the talks on the EU’s next Health PPP but it will be important not to reinvent the wheel. When IMI was launched more than a decade ago, the idea of including PE in all health projects would have been a tall order. PE was still a fledgling idea for which there were few practical examples or guidance on how it could work in practice. 
That’s why PFMD exists. Now, after several years of working with others – notably through the IMI Paradigm project – there has been significant progress on how to deliver patient involvement. 
At PFMD, we have been developing guidance on patient engagement, mapping patient engagement initiatives, training organisations, and working with broad consortiums of stakeholders on practical ‘How to’ modules that help make PE happen. And, by the summer of 2020, Paradigm will have pushed things even further forward, providing a sound basis from which to work. 
We are delighted to see PE on the cusp of going mainstream. This is an idea whose time has come – the next EU Health PPP could be a big moment for patients and the future of healthcare.

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