Patient organisations, individuals representing patient organisations, patients, carers etc often devote their time to support and participate in activities with industry.

When this occurs the service, they provide is acceptable providing they are provided for the purpose of supporting healthcare, research, or education; and do not constitute an inducement to recommend, and/or, prescribe, supply, sell or administer a specific medicine. Such services can be remunerated either to the individual or a payment can be made directly to a patient organisation. It is important a written agreement is put in place for such services whether they are to be remunerated or not. Such agreements should be with, and signed by, the individual or organisation the payment is to be made to. This and additional requirements are set out in Clause 24, Contracted Services and should be followed.

Remuneration should be reasonable and not exceed the ‘fair market value’ of the services provided. “Fair market value” is not itself defined in the ABPI Code, as the ABPI cannot recommend rates due to competition law.

A fair market value will depend on a number of elements, including the kind of activity being undertaken, the amount of time invested, and the experience and skills of the people involved. Whilst high-level principles can shape thinking, all payment decisions including when to pay and how much are the responsibility of individual companies.

Whilst there is a strong public health and patient benefit rationale for engagement between pharmaceutical companies and patient organisations, any relationship between patient organisations and the pharmaceutical industry can also be perceived as commercially motivated, as the EFPIA guide Working Together with Patient Groups notes. So the principles of clarity, integrity, independence and transparency are critical in respect of payments, along with adherence to Code requirements.

What the ABPI Code says about Disclosure

The ABPI Code includes the importance of transparency with regard to transfers of value including payments, and on having written agreements in place irrespective of whether a payment is to be made.

Clause 29.1 states that companies must make publicly available annually, a list of the patient organisations to which it provides donations, grants or sponsorship (including in relation to events/meetings) or with whom it has engaged to provide contracted services over the reporting period. This information must be disclosed on the company website either at a national or European level. Each reporting period shall cover a full calendar year. Further each company must include a note of methodologies used by it in preparing the disclosures and identifying support and contracted services provided.

The relevant requirements for disclosure of donations, grants and sponsorship (including in relation to events/meetings) provided to Patient Organisations, What the ABPI Code says about Disclosure and payments for contracted service by patient organisations, the public, patients and the media are covered in ABPI Code Clauses 29, 30 and 31.

A template to disclose the information required in relation to patient organisations is available from the PMCPA website The use of this template is optional.

Disclosure UK. Companies may additionally choose to submit their patient organisation disclosure web page link to the ABPI’s existing transparency database, Disclosure UK. A list of links to patient organisation disclosures on individual company websites is published annually via Disclosure UK. Providing this link is not mandatory for pharmaceutical companies covered by the ABPI Code, although it is supported by the 2021 ABPI Principle on Transparency and backed by the ABPI Board. For more information about the patient organisation ‘gateway’, visit the Disclosure UK resources.

The Public, Including Patient and Journalists

Clause 30.1 states that Companies must make publicly available annually details of the fees for certain contracted services paid to members of the UK public, including patients and journalists. These services include speaking at meetings, assistance with training, writing articles and/or publications, participating in advisory boards, advising on the design etc of clinical trials and participating in market research where such participation involves remuneration and/or travel.

The disclosure for contracted services provided by members of the public, in accordance with Clause 24, must include:

  • the total number of members of the public, including patients and journalists contracted to perform services and the total amount paid per calendar year, and a description of the types of services provided that is sufficiently complete to enable the reader to understand the nature of the services provided without the necessity to divulge confidential information
  • companies should provide a breakdown of the total payments to each group of individuals, i.e.
    the public, patients and journalists without the necessity to divulge confidential information
  • fees and expenses should be disclosed separately.

Each company must include a note summarising the methodologies used by it in preparing the disclosures and identifying support and services provided.

A template to disclose the information required in relation to patient organisations is available from the PMCPA website The use of this template is optional.

Clause 31 sets out the Timings, Duration and Retention of Disclosure Information

  • Disclosures must be made annually in respect of each calendar year and must be in the first six months after the end of the calendar year in which the transfers of value/ payments were made.
  • The information disclosed must remain in the public domain for at least three years from the time of first disclosure.
  • Companies must document all disclosures and retain the records for at least five years after the end of the calendar year to which they relate.

Additional sources of guidance

The EFPIA Patient Think Tank (PTT) is developing further guidance (non-legally binding and complementary to the EFPIA Code) on the remuneration of patients, patient organisation representatives and carers for work undertaken with pharmaceutical companies and associations.

A set of principles and criteria for establishing levels of remuneration is being developed, co-created by representatives of patient organisations and the research-based pharmaceutical industry through the PTT in collaboration with the EFPIA Ethics and Compliance Committee, WECAN and Patient Focused Medicines Development (PFMD).

The NIHR website provides practical advice on paying and recognising the contributions of members of the public and offers a range of guides, calculators and other information. While the resources are designed to support involvement in research, the general principles have wider application.

Companies should be mindful that patients value consistency, transparency and a rationale for payments they receive as compensation (reimbursement of expenses is additional, and not the same as compensation). They may need to declare payments for tax, and payments may also impact on any state benefits received.


Last modified: 20 September 2023

Last reviewed: 20 September 2023