Conclusion

We hope this sourcebook gives you some practical guidance on some areas of compliance, and where to go for more advice when working together with patients and patient organisations.

While the core principles of behaviour should remain fairly constant, this is a developing area with new information and updates continuing to emerge. We will aim to update the sourcebook regularly and would appreciate any comments and feedback.

As a reminder, while this new sourcebook provides informal guidance, following it does not guarantee compliance. Companies need to ensure they comply with the ABPI Code.

Further information and sources

ABPI:
Code of Practice

ABPI/National Voices:
Working Together, Delivering For Patients

Association of Medical Research Charities:
An Essential Partnership: A guide for charities working with industry

EFPIA:
Working Together with Patient Groups

EFPIA:
Health Collaboration Guide 2017

IFPMA:
Code of Practice 2019

Patient Focused Medicines Development, Workgroup of European Patient Advocacy Networks, Myeloma Patients Europe:
Reasonable Agreements between Patient Advocates and Pharmaceutical Companies

European Patients’ Academy on Therapeutic Innovation

Patients’ Association

Plain English Campaign

European Respiratory Journal:
The Expert Patient: towards a novel definition

National Institute for Health Research INVOLVE

Innovative Medicines Initiative:
PARADIGM

Change Foundation:
Should Money Come Into It? (no longer available online)