What the ABPI Code says

Written agreements must be in place and companies must disclose details of the patient organisations to which they provide financial or significant non-financial support, under Clause 27.2 of the ABPI Code.

As with any activity, transparency is vital in building and supporting trust. Clause 4.6 and 4.7 of the ABPI Code covers responsibilities in relation to disclosure of clinical trials and non-interventional studies of marketed medicines.

Additional sources of guidance

The Association of Medical Research Charities (AMRC) states in its publication An Essential Partnership: A guide for charities working with industry:

… charities can play a key role in representing the patient voice because they are in the unique position of having direct contact with patients while at the same time funding medical research.

The National Institute for Heath and Care Research (NIHR) website provides information about public involvement in research and features some practical tools and resources for researchers and others. In April 2020, the NIHR also launched a Centre of Engagement and Dissemination to bring together its activities in patient and public involvement, engagement and participation with its strengths in research dissemination.

The ABPI is a member of an EU Commission project called PARADIGM which is identifying the tools needed by both industry and patient and medical research charities to improve public and patient involvement in research and development. PARADIGM is also working to develop metrics to evidence why public and patient involvement in research and development is beneficial.

EFPIA’s guide on Working Together with Patient Groups sets out how patient engagement across the life cycle of a medicine, including at the R&D stage, can provide critical insights, for example in contributing to study design, informed consent forms and layperson summaries. It was developed by the EFPIA Patient Think-Tank (PTT) in collaboration with EFPIA’s Ethics and Compliance Committee and provides helpful suggestions and solutions for some of the challenges.

Last modified: 20 September 2023

Last reviewed: 20 September 2023