Appendix 5: Working with patient organisations

The ABPI has produced guidance entitled Working with Patients and Patient Organisations: A sourcebook for Industry to support pharmaceutical companies in working successfully and collaboratively with patients and patient organisations.

We want to support relationships that are in the interests of patients and within the law and the ABPI Code. We also hope that the sourcebook will be helpful to patient organisations as they build partnerships with industry.

Many people have asked for a simple declaration that the ABPI, and its Code of Practice, support industry and patient organisations working together.

The Introduction to the ABPI Code has always referred to this, and the 2019 edition, in the principles and overview of self-regulation, states that:

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

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

The sourcebook has been produced in response to suggestions from industry and patient organisations. There is a great deal of useful and thoughtful guidance available already from national and international organisations, in addition to the ABPI Code, and we are not seeking to replicate or replace what already exists. Rather, our aim has been to collate practical tools and tips and to provide pointers to sources of information.

The ideas you will find in the Sourcebook constitute a framework for thinking and deciding on how best to engage with patient organisations.

One size does not fit all, so inevitably there is not one template that can be applied to every situation. But we hope that you will find enough advice to help guide your way.

You can download a copy of the Sourcebook from the ABPI website www.abpi.org.uk.