New guidance launched for pharma firms working with patients

New guidance launched for pharma firms working with patients

A guide for pharmaceutical companies working with patients has been published this week by the Association of the British Pharmaceutical Industry (ABPI).

The guide – Working with patients and patient organisations – a sourcebook for industry – provides companies with new guidance on working successfully, collaboratively and ethically with patients and patient groups and in line with the ABPI Code of Practice.

It’s also a response to patient organisations looking for greater clarity on their relationships with companies and confirms the ABPI view that working with patients and patient organisations can bring significant public health benefits.

The sourcebook covers six topics, which were identified as areas where further guidance would be of assistance:

Principles and agreements

Companies must have written agreements when working with patient organisations, and principles of clarity, integrity, independence and transparency should underpin all collaborations.

Defining what is a patient organisation, patient or patient advocate

This has an impact on what information can be provided, for example, prescription medicines cannot be advertised to the public.

Events and meetings

The code has strict guidance on the purpose of the meetings and what can and can’t be included, for example, meetings must have a clear educational purpose.

Research and development

Patient organisations or charities can play a key role in representing the patient voice due to their unique position of having direct contact with patients while at the same time funding medical research, however, however agreements must be in place and companies must disclose details of the patient organisations that they provide financial support to, in line with the Code.

Product launches

Many companies work with patients to shape input to new product launches. In terms of compliance a new product launch is no different to any other activity and the ABPI code applies in the same way, with rules on promotion, information, agreements and events.


The ABPI supports collaboration between industry and patients in the interests of enhancing public health, however, companies must make publicly available each year a list of the patient organisations to which they provide support, both financial and non-financial with a description of what the support is for and the monetary value.

“The industry is here to develop medicines that address unmet medical needs and it is clear that to understand that need, you must learn from the people living with the condition,” said Jill Pearcy, Director of ABPI Code Engagement at the ABPI, and author of the report.

“We have worked with patient organisations to produce a sourcebook which includes practical guidance, tips and tools, to support pharmaceutical companies collaborate with patients and patient organisations.

“It might sound obvious, but if you are not working with patient interest at the heart of what you do you can’t be truly patient-centric. As an industry we are committed to this.”