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Some companies may ask themselves whether they can actually work together with patients. The clear and simple answer to that is: YES, they can! Nevertheless, there are laws and behavioral guidelines that must be followed when talking to patients, which define who can talk, when and how, about what.
In order to make sure to act legally compliant it is recommended to consult with patient engagement experts (as admedicum) or legal experts at an early stage.
Also, there are different stages and forms of legal and behavioral regulations that need to be followed when talking to patients:
Legal compliance
Legislation: the respective laws (e.g. national or EU) need to be respected (e.g. German drug advertising law “Heilmittelwerbegesetz (HWG)”)
Industry self-regulation
Industry codes of conduct need to be followed, e.g. the EFPIA code (EU) or the FSA-code (German)
Codes of companies and patient groups
Internal company codes of conduct and SOPs that to be respected, e.g. Novartis Committment to Patients and Caregivers or the EURORDIS Code of Practice between Patient Organizations and the Healthcare Industry
Sometimes procedures can be legal but not behaviorally compliant. An example could be creating complex contract drafts for collaboration with patients which is correct from a legal point of view but isn’t accepted by patient organizations.
Please note that there is profound guidance available on how to work together with patients.
- For example, the European Federation of Pharmaceutical Industries and Associations (EFPIA) developed the “EFPIA Code”. The EFPIA code serves as a collection of ethical rules for the promotion of medicinal products to HCPs and the interactions with HCPs, HCOs and POs . Read more about the EFPIA code here
- Ethical principles for the collaboration between industry and patients can also be found at the European Patients’ Academy (EUPATI).
In any case, there are some simple aspects that can help companies when starting to collaborate with patients:
- Clarify internal and external responsibilities
- Seek legal advice
- Phrase your goals clearly
- Make internal and external communication transparent
If you are interested in learning more about Patient Engagement, check out our eLearning module titled European Patient Engagement created in partnership with Forum Institute.
