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The contracts provided to patient advocates are often too long, difficult to understand for patient advocates, contain ambiguous clauses, contain terms that are in conflict with the very nature of patient advocacy, or even put the signing patient advocate at legal risk. That is what a survey run by the pan-European patient advocacy network Myeloma Patients Europe (MPE), and further supported by a network of 21 pan-European cancer patient advocacy organisations (WECAN) from other disease areas, shows.legal agreements

According to the survey “Reasonable agreements between patient advocacy and pharma industry” answered by more than 80 patient advocates and representatives of several European and national patient organisations, 51% of patient advocates only understand
some, few or none of the contracts they receive. In addition, 81% of all contracts are unreasonably extensive in length (6 pages or more) and patient advocates invest on average 295 minutes (almost 5 hours) into reading negotiating and processing each contract.

“Patient organisations struggle to cope with this. Patient advocates are often doing their advocacy and advisory work as volunteers next to a regular day job. They do not have the support of legal departments to check the contracts and negotiate changes, apart from the fact that they want to focus their precious time on patient advocacy and patient support, not on contractual arrangements and administration. In addition, no-one can expect them to sign these contracts blindly, which seems to be a prevalent expectation today,” says Ananda Plate, CEO of Myeloma Patients Europe and coordinator of this project.

As this survey shows, most of the contracts provided to patient organisations by pharmaceutical companies contain unreasonable clauses. As an example, patient advocates are often asked to guarantee that any third party material shared by the advocates throughout the collaborative work can be freely used by the company without further consent of the advocate.

Even more, companies often claim unrestricted and even exclusive ownership and intellectual property of work, documents and ideas delivered by the advocate during the collaboration, independent on whether the contributions were just shared by the advocate e.g. when acting as speaker, or provided for further use by the company as an advisor.

After a first analysis on a sample of contracts and subsequently a survey amongst 81 patient advocates from various disease areas, this MPE-WECAN project will report facts and data from the survey and will also make suggestions for simpler, more understandable agreements that would sufficiently reflect and protect the interests of both parties when patient advocates engage in consultancy, collaborative projects, advisory boards and faculty of industry-initiated initiatives.

“Having legal contracts model between pharma and patient advocates validated by both parties would help to ensure a trustful and transparent partnership with the protection needed for both sides”, said Plate.

The patient community´s hope is that compliance departments of the companies will be ready to pick up these joint proposals towards the implementation of a more effective partnership on transparent and reasonable agreements.

To get this dialogue started, Plate is presenting first preliminary results of the survey at the conference “Corporate Compliance & Transparency in the Pharmaceutical Industry” today in Zurich, which is attended by about 120 ethics & compliance officers, legal affairs managers and patient relations officers of pharmaceutical companies.

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