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
Change Foundation: Should Money Come Into It?
European Respiratory Journal: The Expert Patient: towards a novel definition
IFPMA: Code of Practice 2019
Innovative Medicines Initiative: PARADIGM
Patient Focused Medicines Development, Workgroup of European Patient Advocacy Networks, Myeloma Patients Europe: Reasonable Agreements between Patient Advocates and Pharmaceutical Companies
We would like to thank the following organisations for their help and contributions in developing this guidance:
- AstraZeneca Rare Disease
- Boehringer Ingelheim Ltd
- Novo Nordisk
- Action Kidney Cancer
- Asthma + Lung UK
- Cancer 52
- Cystic Fibrosis Trust
- Diabetes UK
- UK Gout Society
- The Haemophilia Society
- Kidney Research UK
- MPS Society
- National Voices
- Pain UK
- Parkinsons UK
- Primary Care Rheumatology and Musculoskeletal Medicines Society
- Versus Arthritis
Last modified: 20 September 2023
Last reviewed: 20 September 2023