“It takes a village to raise a child”
26.09.19
We all agree that patient engagement needs to happen in a meaningful way throughout the life cycle of a medicine and we know that none of us can achieve this alone.
But how do you get from a disparate group of people to a real community? What enables that community to build a village and raise a child?
The foundations are a sense of trust, a sense of understanding and shared values.
The opening sentence of the Patient Engagement Open Forum (and title of this blog) became the mantra of the event, organized by three collaborative initiatives, PARADIGM, PFMD and EUPATI.
The value of such collaborations is often seen as the cumulative worth of the expertise and knowledge that’s brought together to create something new, let that be recommendations, templates or proposals to advance the field of patient engagement.
PARADIGM aims to deliver tools and processes to foster patient engagement under the umbrella of an unprecedented collaboration called the Innovative Medicines Initiative, PFMD is a global coalition of health stakeholders striving to deliver a standardized meta-framework for patient engagement and EUPATI is the training program that equips patient organisations with the necessary knowledge to be meaningfully involved and to be an equal partner in the healthcare equation.
All these initiatives bring people together from various organisations and indeed, the wealth of expertise drives excellent work. We meet, we coordinate, we face challenges, we seek consensus and strive to understand each other to reach a common goal. This is what builds trust and what really makes a community.
The Open Forum was the first of its kind. It has connected people from across these initiatives and beyond. The biggest gathering in Europe for people who work on patient engagement. We have finally put faces to the names we may only have seen in emails but more importantly we have worked together intensely over two days towards a shared vision: to make patient engagement a reality.
We have exchanged experiences about current practices, mapped out the necessary elements of a toolbox to improve them, discussed how we make the legal framework of collaboration easier to navigate, how we get to a common value proposition on what “fair” means in the context of compensation of patients and patient experts, and maybe most importantly we have talked about evidencing the value of patient engagement, what the benefits are for the different stakeholders and how we can demonstrate them to the wider healthcare community.
Finally, we have realized that we all need to become ambassadors for patient engagement in our own organisations, in our own team and in our own micro-environment because we need change, fundamental organizational, cultural change. And that is no easy task. It may start with setting KPIs and objectives, but we need to win hearts and minds to really transform the way we think and do.
All the concrete outputs from the Open Forum and these three initiatives will play an important role in making patient engagement the norm, but we should not forget about the value of a community with a shared vision.
