As the EFPIA guide Working Together with Patient Groups states, irrespective of the strong rationale for engagement, any relationship between patient organisations and the pharmaceutical industry can be perceived as commercially motivated. That’s why it is crucial to stick to practices of clarity, integrity, independence, transparency and non-interference.
Building on the EFPIA guide, the EFPIA Patient Think-Tank (PTT) has been requested to provide further guidance (non-legally binding and complementary to the EFPIA Code) on remuneration of patients, patient organisation representatives and carers for work undertaken with pharmaceutical companies and associations.
The PTT is establishing a set of principles, also suggesting objective criteria based on which the level of remuneration can be determined. The principles are being co-created by representatives of patient organisations and the research-based pharmaceutical industry through the PTT in collaboration with the EFPIA Ethics and Compliance Committee, WECAN and Patient Focused Medicines Development (PFMD).
It is important to state that while these high-level principles can shape thinking, all payment decisions including when to pay and how much are the responsibility of individual companies.
National Voices has a policy of supporting unfunded individuals with lived experience who contribute to their events. Remember that they may need to declare payments for tax, and there might be an impact on benefits.
What the ABPI Code says
In this area, the Code focuses on the importance of transparency and having written agreements.
Under Clause 27, companies must make publicly available each year a list of the patient organisations to which they provide support (both financial and significant non-financial), with a description of what that support is for, and the monetary value. Agreements should include the amount of funding, as noted above.
Compensation should be reasonable and not exceed the fair market value of the services provided.
“Fair market value” is not defined in the ABPI Code; the ABPI cannot recommend rates due to competition law. It will depend on a number of elements, including the kind of activity being undertaken, the amount of time invested, and the experience and skills of the people involved. While companies will take their own approach, patients value consistency and clarity on the reasons behind it. Remember that reimbursement of expenses is not the same as compensation.
NIHR INVOLVE provides practical advice on paying and recognising the contributions of members of the public and offers a range of guides, calculators and other information. While the resources are designed to support involvement in research, the general principles have wider application.
The Change Foundation, an Ontario-based policy think tank, has a useful decision tool on its website as well as a brief summary of things to think about when considering compensation.