Framework for Patient Engagement
That’s why, since 2016, key stakeholders have worked together, as part of the Patient Focused Medicines Development (PFMD) initiative, to explore the patient engagement landscape and build a patient engagement master framework and its toolbox, the Patient Engagement Management Suite – a set of integrated tools to help to make patient engagement happen.
Next, a series of interviews were conducted, generating a stakeholders’ expectations matrix that identified the needs and preferences of different stakeholders for patient engagement. The full publication is available online.
The guidance introduces seven Quality Criteria to assess patient engagement practices that have been consolidated from published patient engagement frameworks and further co-developed by 7 working groups.
During the landscape and needs analysis, over 150+ activities recommending patient engagement were carefully extracted. In 2018, working groups consolidated these 150+ activities into a Public Consultation seeking expert opinion to support the development of guidance for the prioritised activities.
But this was not enough. In the summer of 2018 a common need was identified for a co-created, unified capacity-building effort. Thus the Patient Engagement Training effort was initiated by 6 pharma companies, working together WITH patient organisations and regulatory bodies to deliver a comprehensive, practical and cohesive training program for anyone looking to start or advance in their patient engagement journey. You can take the training here.
The Calculator is complementing the Legal Agreements initiative – a collaboration with WECAN, MPE and over 10 pharmaceutical companies. The co-creation process in this initiative saw the launch of four Reference Agreements which could be considered the starting point for all patient engagement endeavours.
Anyone interested in patient engagement can use the PEM Suite. This hub of co-created tools, resources and practices can help stakeholders adopt patient engagement in a systematic, efficient and meaningful way.
This Suite is free, courtesy of the PFMD Partnership, resourced and developed by its members and contributors and made available for free.