Collaboration between pharmaceutical companies and patient advocates often requires both parties to sign contracts, for example in the form of speaker’s agreements, consultancy or collaboration contracts. These contracts define the terms and conditions of the collaboration, covering such matters as confidentiality, intellectual property, copyright, data protection, compensation and other responsibilities of both parties. However, collaboration with patient organisations cannot simply be based on a contract between a recipient and a service provider. The pharmaceutical industry and patient organisations share some interests to achieve their objectives to improve outcomes for patients, and therefore one can assume that there is a relationship of collaboration rather than a commercial one.

The nature of the relationship should be taken into account to establish the appropriate contract and clauses to protect both sides. However, in practice, this has led to an untenable situation of legal exaggeration. The contracts provided to patient advocates are often too long, and are difficult to understand. They contain ambiguous clauses, or terms that are in conflict with the very nature of patient advocacy. They may even put the signing patient advocate at legal risk.

Myeloma Patients Europe (MPE), along with the Workgroup of European Cancer Patient Advocacy Networks (WECAN), a network of 21 pan-European cancer patient organisations, has initiated the project “Reasonable Agreements between Patient Advocates and Pharmaceutical Companies”. The project is analysing legal contracts between patients’ organisations and pharmaceutical companies, with the aim of evaluating the content of their clauses bearing in mind what a reasonable contract should look like. The main goal is that patient advocates and patient organisations will collaborate with pharmaceutical companies to develop tools that can make the legal relationship between both parties easier and more acceptable.

To ensure the most collaborative strategy possible, WECAN and Patient Focused Medicine Development (PFMD), under the initiative and coordination of MPE, collaborate to jointly facilitate patient engagement by providing a framework, guidance and templates for reasonable agreements between patient organisations, patient advocates and the pharmaceutical industry.