Discover the tools to support fair remuneration of the patient community for interactions with the pharmaceutical industry

Enabling fair remuneration and good practice in patient engagement through harmonized global standards

About the project

Remuneration of the patient community continues to be a tension point, leading to a call to action for consistency in the implementation of global standards. Through the harmonization of existing collaborative work, this project co-created global resources to empower open dialogue and advocacy around fair remuneration, cultivating trust and transparency between the patient community and pharmaceutical companies.

The project was led by a Steering Committee with representatives from the patient community and the pharmaceutical industry. Broad public consultation on all deliverables was utilized to reach a consensus and to cultivate systemic change to drive fair and ethical remuneration practices.

Get started using co-created tools to drive fair remuneration for patient engagement

Through co-creation and stakeholder engagement, the project developed resources to support patient engagement partners and drive good practice whilst ensuring compliance with relevant Codes of Conduct and local regulations. Project resources include:

Fair Patient Engagement Planner – launching soon!

A practical digital tool to define patient engagements and drive transparent dialogue on fair remuneration. The Fair PE Planner operationalizes the Global Principles and applies the Global Activity and Expertise Frameworks and supports users to:

  • Define patient engagement activities and the expertise and experience needed
  • Find the right expertise match for PE activities
  • Facilitate open and transparent dialogue around fair remuneration
  • Consistently apply the Global Principles
Global Principles for remunerating the patient community for interactions with the pharmaceutical industry. Harmonizing and building on previous collaborative work, these Principles provide objective guidance to drive consistent, fair and transparent remuneration.

Download the Global PrinciplesDownload the one-pager on Global Principles

Global Remuneration Methodology & Frameworks
Fair remuneration must consider the complexity of the patient engagement activity and the expertise required. To operationalize this aspect of the Global Principles, the Global Activity and Expertise Frameworks were co-created, building on previous collaborative work.

The Frameworks are the foundation of a global methodology for determining fair remuneration.

Download the Global Activity Framework: The Framework provides a list and definitions of the most common patient engagement activities between pharmaceutical companies and the patient community.

Download the Global Expertise Framework: The Framework facilitates consistently defining the expertise types and levels required for a patient engagement activity, and also supports good practice in defining patient engagements and participant matching based on expertise needs for activities.

Resources consulted, adapted, or harmonized in this project

Previous collaborative work to establish a trusted process to remunerate the patient community for interacting
with the pharmaceutical industry has been consulted and harmonized on this project.

Patient Compensation Toolbox by National Health Council (NHC)

Working Together with Patients by The European Federation of Pharmaceutical Industries and Associations (EFPIA)

Guiding Principles on Reasonable Agreements between Patient Advocates and Pharmaceutical Companies by PFMD, Myeloma Patients Europe and the Workgroup of European Cancer Patient Advocacy Networks (WECAN)

Note for Guidance on Patient and Patient Organization Interactions by International Federation of Pharmaceutical Manufacturers & Associations (IFPMA)

Working with patients and patient organisationsWorking Together with Patients  by Association of the British Pharmaceutical Industry (ABPI)

Steering Committee Members

The project Steering Committee was composed of representatives from the patient community and the pharmaceutical industry. They provided iterative strategic advice, contributed to co-creation and facilitated public consultation on the projects’ deliverables.

PE Country Guidelines

The “Patient Engagement Management Suite” is brought to you by the PFMD partnership.