Conclusion

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

Whilst this sourcebook provides informal guidance, it remains the responsibility of companies to ensure that they comply with the most up-to-date version of the ABPI Code. Ways of working together between pharmaceutical companies and patient organisations continue to develop.

We aim to update the sourcebook on a regular basis with information and pointers to guidance, as well as any changes to the ABPI Code.

We would appreciate any comments and feedback on this sourcebook to feed into future editions.

Further information and sources

ABPI: Code of Practice

ABPI/National Voices: Working Together, Delivering For Patients

AMRC: An Essential Partnership: A guide for charities working with industry

Change Foundation: Should Money Come Into It?

Disclosure UK

EFPIA: Health Collaboration Guide 2017

EFPIA: Working Together with Patient Groups

European Patients’ Academy on Therapeutic Innovation

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

IFPMA: Code of Practice 2019

Innovative Medicines Initiative: PARADIGM

National Institute for Health and Care Research

Patients’ Association

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

Plain English Campaign

PMCPA: Prescription Medicine Code of Practice Authority