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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?

Acknowledgements

We would like to thank the following organisations for their help and contributions in developing this guidance:

  • Bristol Myers Squibb
  • Eli Lilly
  • Gilead
  • Grunenthal
  • Janssen-Cilag
  • MSD
  • Napp
  • Novo Nordisk
  • Sanofi
  • Sunovion
  • Teva
  • UCB
  • EFPIA
  • AMRC
  • Arthritis UK
  • Asthma UK
  • British Lung Foundation
  • Cancer 52
  • Cystic Fibrosis
  • Diabetes UK
  • Haemophilia UK
  • Heart Rhythm Alliance
  • Kidney Research UK
  • MPS Society
  • MS Society
  • National Voices
  • NCRI
  • NIHR INVOLVE
  • Pain UK
  • Parkinsons UK
  • Primary Care Rheumatology & Musculoskeletal Medicine Society
  • UK Gout Society

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ABPI:

ABPI Head Office
7th floor, Southside
105 Victoria Street
London
SW1E 6QT

Telephone: +44 (0) 20 7930 3477
Email: getintouch@abpi.org.uk
https://www.abpi.org.uk/
https://twitter.com/ABPI_UK

PMCPA:

7th floor, Southside
105 Victoria Street
London
SW1E 6QT

Telephone: +44 (0) 7747 8880
www.pmcpa.org.uk
https://twitter.com/PMCPAUK

Complaints should be submitted to the Director of the PMCPA at the above address, email complaints@pmcpa.org.uk.

Working with patients and patient organisations - a sourcebook for industry

  • Principles and agreements
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  • Conclusion

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  • Working with patients and patient organisations - a sourcebook for industry

ABPI

The Association of the British Pharmaceutical Industry is a company limited by guarantee registered in England and Wales 
(registered number 09826787) and its registered office is at 7th Floor Southside,105 Victoria Street, London, SW1E 6QT.
Telephone +44 (0) 207 9303477

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Prescription Medicines Code of Practice Authority (PMCPA)

The Prescription Medicines Code of Practice Authority (PMCPA) was established by The Association of the British Pharmaceutical Industry to operate the ABPI Code of Practice for the Pharmaceutical Industry independently of the ABPI. The PMCPA is a division of ABPI which is a company registered in England and Wales (registered number 09826787) with its registered office at 7th Floor, Southside, 105 Victoria Street, London SW1E 6QT.

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The Office of Health Economics (OHE) is a company limited by guarantee registered in England and Wales (registered number 09848965) and its registered office is at 7th Floor Southside, 105 Victoria Street, London, SW1E 6QT. OHE provides independent research, advisory and consultancy services on policy implications and economic issues within the pharmaceutical, health care and biotechnology sectors.