Working with patients and patient organisations - 2022 sourcebook for industry

Working with patients and patient organisations - 2022 sourcebook for industry

The ABPI has produced this sourcebook to support pharmaceutical companies, patients and patient organisations work together successfully, with relationships that are in the interests of patients and meet the standards set out in the 2021 ABPI Code of Practice.

Patient Sourcebook 2022 990X610

Working with patients and patient organisations - 2022 sourcebook for industry

The ABPI supports industry and patient organisations working together, with the introduction to the ABPI Code stating:

“Working with patients and patient organisations can bring significant public health benefits.”

There is already a great deal of useful and thoughtful guidance on working together available from national and international organisations, in addition to the ABPI Code. The aim of this sourcebook is to bring together practical tools and tips and to provide pointers to further sources of information, rather than to replicate or replace what already exists.

This sourcebook is designed to help pharmaceutical companies and patient organisations plan how best to engage and work together successfully. Every relationship will be different, and there is no one single template to follow in every situation. We hope that you will find enough advice in the sourcebook to help you work together successfully.

How this sourcebook was developed

In 2018 the ABPI researched how its Code of Practice should be developed to take account of the evolving needs of patients and industry. We talked to compliance, health and business professionals across the pharmaceutical industry as well as representatives of patient organisations. People asked for guidance to sit alongside the ABPI Code, which could help build successful engagement between industry and patient organisations.

We researched what other guidance was available, including with colleagues at the European Federation of Pharmaceutical Industries and Associations (EFPIA), and the International Federation of Pharmaceutical Manufacturers and Associations (IFPMA).

We held workshops which identified and discussed six topic areas where further guidance would be helpful. We have structured the sourcebook around these six areas:

  • Principles and agreements
  • Definitions of participants
  • Events and meetings
  • Research and development
  • Product launches
  • Payment

The first version of the sourcebook became available in 2018. We have now reviewed and updated the sourcebook to reflect the 2021 ABPI Code of Practice and new resources available.

About the ABPI Code of Practice

The ABPI Code is a self-regulatory code, first established by the ABPI in 1958. It is regularly updated and reviewed in a public consultation which includes the Medicines and Healthcare products Regulatory Agency (MHRA), the British Medical Association (BMA), the Royal Pharmaceutical Society (RPS), the Royal College of Nursing (RCN), the Competition and Markets Authority (CMA) and the Serious Fraud Office (SFO).

The ABPI Code demonstrates the commitment of ABPI member companies and companies who have signed up to abide with the ABPI Code to operate in a professional, ethical and transparent manner, to ensure the appropriate marketing of medicines and to support health professionals in the provision of high-quality healthcare, all with the aim of benefiting patients.

The 2021 ABPI Code of Practice sets standards for among other things:

  • the promotion of medicines to health professionals
    and other relevant decision-makers in the UK
  • interactions between the industry and health
  • the provision of information about prescription-only
    medicines to the public and patients
  • pharmaceutical companies’ relationships with
    patient organisations

The ABPI Code does not cover the promotion of over-the-counter medicines to the public.

ABPI member companies agree to comply with the Code as a condition of membership. In addition, about 120 non-member companies have signed up to its standards. The ABPI Code is administered by the Prescription Medicines Code of Practice Authority (PMCPA), which operates independently of the ABPI.

The ABPI Code incorporates the applicable requirements or principles or both set out in:

  • IFPMA Code of Practice
  • EFPIA Code of Practice
  • the World Health Organization’s Ethical Criteria for Medicinal Drug Promotion
  • Directive 2001/83/EC on the Community Code relating to medicinal products for human use, as amended by Directive 2004/27/EC
  • the Human Medicines (Amendment) (No2) Regulations 2014 No.1878