The framework-building work stream produced Patient Engagement Quality Guidance that has been shared within and beyond organisations, referred to in conferences and used as a tool to plan patient engagement projects and assess the quality of ongoing and completed projects.

The co-developed Patient Engagement Quality Guidance has been embraced by the patient engagement community which has shared it internally and beyond and utilised it for patient engagement projects. These initiatives spanned the full medicines-development continuum, the lifecycle of medicines, and care continuum in both health and social research. Member organisations have adopted it for various purposes, on a project basis or as a tool to design, assess and manage all their patient engagement activities. Other non-member companies have simply downloaded the document and worked through it step by step.

Currently, the Patient Engagement Quality Guidance Quality Guidance is in the piloting phase with 5 projects in Europe and the United States by 2 organisations with diverse expertise including patient advocacy, medical affairs, pharmaceuticals, research and charity, healthcare services and consultancy. The outcomes of these projects will help us understand and explore the impact Patient Engagement Quality Guidance can bring to users. It can also improve its usability and help us incorporate it into Synapse, allowing you to manage all your PE projects in one place.

The SYNaPsE platform has evolved from mapping Patient Engagement initiatives to also connecting the whole Patient Engagement ecosystem of experts and their organisations to initiatives and related resources. The platform has grown 18% from 2017 in initiatives and 30% in organisations, further adding to the diversity of the tool. This kind of growth tells us the impact Synapse has for those working in patient engagement - it can bring efficiency and productivity to companies and organisations by enabling users to share their patient engagement projects, knowledge and reports in one coordinated place, available 24/7. A new relationship management function is piloted to allow any user to map, connect and now operate patient engagement. This allows them to shape, plan and assess patient engagement projects with partners, to keep tracks of relationship with partners and who they have been in touch with within your organization, and finally to aggregate the bigger picture of your organization’s activities and its performance.

In terms of reach and impact, PFMD Communication in 2018 has focused on reaching not only the patient engagement enthusiasts, but also the early majority that might not yet have fully embraced patient engagement. In order to advance a more systematic, high quality and meaningful patient engagement, we need to create a mindset shift on a larger scale and not talk only to the “converted”. PFMD’s relevance and reputation continues to grow with a milestone publication on understanding stakeholders’ expectations of patient engagement across the medicines lifecycle. PFMD also published 45 insightful blogs, of which 22 were guest posts from members and collaborators receiving over 7,000 views by the PE community. Constant communication with members and other interested groups has always been one of the focal points for PFMD and this continued in 2018 with 7 internal and external newsletters sent out reaching more than 4,000 patient engagement enthusiasts. Moreover, PFMD participated in 18 external conferences all over the globe, of which 12 included speaking opportunities.

2018 was a pivotal year for our collaborative initiative, preparing the way for a new phase in our shared history - where patient engagement goes mainstream. Various initiatives within the patient engagement landscape have begun aligning with PFMD, joining efforts to maximise the global impact. This collective approach will be both a cause and a consequence of patient engagement going mainstream.

To ensure adoption and viable partnership between pharmaceutical companies and patient advocates, WECAN with the support of PFMD, initiated the multi-stakeholder project “reasonable agreements between patient advocates and pharmaceutical companies” (RAPP). The project aims to improve legal agreements between both parties while providing adequate protection and rules for all sides. Collaboration between PFMD and WECAN on RAPP has produced the very first deliverable - “The Guiding Principles” - that aims to help companies working with patients and patient organisations to formulate agreements that are reasonable for both parties. The work continues with drafting contract templates that can be adopted by all stakeholders, starting with contract templates for Patient Advisory Boards and then collaboration, consulting and speaking agreement.