It was left to Nicola Bedlington from the European Patients’ Forum, Belgium, to reflect on the day’s discussion. Graham Love had talked about moving to a more systematic approach, with patient involvement becoming mandatory. “What I really liked about his presentation was the honesty. They’re not there yet but they are on a journey.”
Eibhlin Mulroe described medicines research and development around a moral imperative, and after her Niels Westergaard had talked about the wider perspective – it’s about better health, not just better medicines.
Russell Wheeler talked about the fact that health systems are broken. Yes, we need to be active. “We need to rock the boat, to be ‘disrupters’,” said Bedlington.
A highlight had been the session with contributions from the pioneers on the course. Niels Westergaard had stressed that EUPATI is not perfect. “We are learning a lot. There is much refining to do,” said Bedlington. There is also a sense of urgency, of a need to move faster. That came over particularly in discussion of the importance of the EUPATI toolbox. “One hundred expert patients are critical, but we shouldn’t underestimate the importance of the toolbox in seven languages,” she said. “We should accelerate that.”
Discussion in break-out groups around National Networks had yielded a great deal of information and general feedback – amounting, indeed, to a “cookbook” of how to go forward at a national level.
The “splendid” presentation by Denis Costello on social media – learning to work smart in the digital world – was followed by a fascinating debate on how the different players in our public-private partnership can use EUPATI. We are moving from being a niche topic to a mainstream one, building capacity so that our partners can meet patients halfway.
One big question was raised and needs to be fleshed out: “EUPATI 2”, or the future after 2017. “We need a robust sustainability structure,” said Bedlington. “How can we move forward collectively and resource it?”