It is now just 2 years since we had the PFMD kick-off meeting in Brussels and 2 years of collaborative efforts to co-create a more systematic approach to patient engagement. It’s exciting that we are beginning to see the fruits of these efforts and the valuable outputs that can be achieved through multi-stakeholder partnership. The strategic focus of our work remains centred around 3 core objectives:
- to visualise and understand the PE landscape, to foster potential synergies, avoid duplication and focus our activities on what is missing and where PFMD can act as a catalyst to drive change
- to build a global PE ecosystem, an open and collaborative community of all stakeholders working together to deliver new solutions, better and faster
- to accelerate cultural change and foster an environment where meaningful PE is the accepted norm, overcoming what is still at the root of many of PE challenges
We continue to make valuable progress across each of these objectives and have established strong connections in this maturing PE environment. We’ve shared the PFMD approach and rationale through peer-reviewed publications. We’ve created SYNaPsE – a rich and actionable PE landscape and community tool, that maps and connects global PE efforts and leaders that is already receiving unprompted citation and endorsement from the wider PE community. We’ve been active participants at key events (such as the NHC sponsor-patient interaction meeting, DIA, Patients as Partners, the Spanish HTA Network 10th Anniversary) as a multi-stakeholder group building awareness and support. In addition, the collective framework co-creation continues to yield tangible outputs including, a new publication exploring expectations from the perspective of each stakeholder group (which will be presented at ISPOR next month), guidance on PE quality with actionable DOs and DON’Ts and illustrative examples of good practices.
Importantly, in the last 3 months, these achievements have allowed us to start a dialogue with all major initiatives to align and shape the PE future together, exploring potential collective projects, sharing expertise and putting concrete ventures on the table. The collaboration with WECAN (Workgroup of European Cancer Patient Advocacy Networks) and MPE (Myeloma Patients Europe) to develop the reasonable contract templates is the first concrete result to address one of the most pressing barriers to proactive and meaningful PE.
Founders will remember that PFMD was designed to be an non-competitive catalyst, not just another initiative. This unconventional and challenging vision is now showing results and it is only a start.
I’d like to acknowledge the active participation of all members and non-members who have been active in driving the work and ‘living’ the shared purpose that makes PFMD what it is today and underpin what it will achieve tomorrow.
From the field I can see many other opportunities to collectively address and solve PE issues and I am proud to share this ambitious target with you.
PFMD welcomes membership from institutions, organisations and enterprises that support a better future for patients. Join us and help shape the patient engagement landscape.