Pharmaceutical industry launches new guidance on working with patients

The ABPI has published a new guide for pharmaceutical companies working with patients.

13 Jun 2019 Posted in News By Press Office

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.
  • Payments; 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 organsiations to which they provide support, both financial and non-financial with a description of what the support is for and the monetary value.

Jill Pearcy, Director of ABPI Code Engagement at the ABPI, authored the report and said:

“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.

"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.”

The guide is being launched at the joint ABPI, AMRC, NIHR conference: Pioneering Partnerships.

About the ABPI

The ABPI represents innovative resea​rch-based biopharmaceutical companies, large, medium and small, leading an exciting new era of biosciences in the UK.

Our industry, a major contributor to the economy of the UK, brings life-saving and life-enhancing medicines to patients. We represent companies who supply more than 80 per cent of all branded medicines used by the NHS and who are researching and developing the majority of the current medicines pipeline, ensuring that the UK remains at the forefront of helping patients prevent and overcome disease.

Globally our industry is researching and developing more than 7,000 new medicines.

The ABPI is recognised by government as the industry body negotiating on behalf of the branded pharmaceutical industry for statutory consultation requirements including the pricing scheme for medicines in the UK.​​​​​​​

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