That’s why it is crucial to stick to practices of clarity, integrity, independence, transparency and respect.
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.
New guidance has now been published by the EFPIA Patient Think-Tank, setting out principles that may help companies in making decisions on remuneration of patients, patient organisation representatives and carers for work undertaken with the pharmaceutical industry. While the guidance provides useful support, it is not a code of conduct.
The principles cover the following points:
• The level of remuneration should be fair [2]
• Non-discrimination
• Respect
• Non-promotional scope
• Transparency
• Appropriate payments
• Consistency
• Right to refuse remuneration
[2] “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 and patient organisations value consistency and clarity on the reasons behind it.