ABPI sourcebook on working with patients and patient organisations is published

ABPI sourcebook on working with patients and patient organisations is published

The Association of British Pharmaceutical Industry (“ABPI”) has this month released a sourcebook for industry on the subject of working with patients and patient organisations. The sourcebook is intended to facilitate compliance with the ABPI Code of Practice (the “Code”), which sets standards for the promotion of medicines to health professionals and other relevant decision-makers.

The key points addressed by the sourcebook are as follows:

  • Principles and agreement – All collaborative partnerships between patient organisations and industry should be underpinned by four guiding principles, namely: clarity of purpose, integrity, independence, and transparency.
  • Definitions – The Code defines terms such as “health professional”, “healthcare organisation” and “patients”, although the sourcebook recommends allowing people involved with a project to self-identify.
  • Events and meetings – At conferences, clinical trial days and patient organisation meetings, the venue and hospitality must be appropriate, and pharmaceutical companies should be mindful of what information is shared with patients.
  • Research and development – Guidance on patient involvement in medical research has been published by the NIHR’s INVOLVE initiative, the EU Commission’s PARADIGM project, and the EFPIA Patient Think-Tank.
  • Product launches – Patient stories in the context of new product launches can be useful for pharmaceutical companies to develop an understanding of the experience of life with a particular condition, however they should take care to comply with the Code in this area.
  • Payments – When patients and patient organisations devote time to participate in activities with industry, they can be paid or recognised in other ways. Transparency is key to ensuring compliance with the Code, and compensation should be reasonable.

It is envisaged by the ABPI that the sourcebook will support pharmaceutical companies in working successfully and collaboratively with patients and patient organisations in order to bring about significant public health benefits.

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