23.1 Pharmaceutical companies can interact with patient organisations or any user organisation such as disability organisations, carer or relative organisations and consumer organisations to support their work, including assistance in the provision of appropriate information to the public, patients and carers.
Companies must respect the independence of patient organisations.
23.2 When working with patient organisations, companies must ensure that the involvement of the company is made clear and that all of the arrangements comply with the Code. This includes the need to declare sponsorship (Clause 23.9) and the prohibition on advertising prescription only medicines to the public (Clause 22.1). The requirements of Clause 19, which covers meetings for health professionals and appropriate administrative staff, also apply to pharmaceutical companies supporting patient organisation meetings.
23.3 Companies working with patient organisations must have in place a written agreement setting out exactly what has been agreed, including funding, in relation to every significant activity or ongoing relationship.
23.4 No company may require that it be the sole funder of a patient organisation or any of its programmes.
23.5 A company must not make public use of a patient organisation’s logo or proprietary material without the organisation’s written agreement. In seeking such permission, the specific purpose and the way in which the logo or material will be used must be clearly stated.
23.6 A company must not seek to influence the text of patient organisation material in a manner favourable to its own commercial interests. This does not preclude a company from correcting factual inaccuracies.
23.7 Each company must make publicly available, at a national or European level, a list of patient organisations to which it provides financial support and/or significant indirect/non-financial support, which must include a description of the nature of the support that is sufficiently complete to enable the average reader to form an understanding of the significance of the support. The list of organisations being given support must be updated at least once a year.
The published information must include the monetary value of financial support and of invoiced costs. For significant non-financial support that cannot be assigned a meaningful monetary value, the published information must describe clearly the non-monetary value that the organisation receives.
23.8 Contracts between companies and patient organisations under which they provide any type of services to companies are only allowed if such services are provided for the purpose of supporting healthcare or research.
Patient organisations may be engaged as experts and advisors for services such as participation at advisory board meetings and speaker services. The arrangements that cover consultancy or other services must, to the extent relevant to the particular arrangement, fulfil all the following criteria:
23.9 Companies must ensure that their sponsorship is always clearly acknowledged from the outset. The wording of the declaration of sponsorship must accurately reflect the nature of the company’s involvement.
There are other codes and guidelines which cover patient groups, including Long-term Conditions Alliance guidelines and Charity Commission requirements etc
Companies should take into account the purpose of materials and/or activities. The purpose of information supplied to a patient organisation must be made clear. For example, there is a difference between providing information to be supplied to the members of a patient organisation and providing background information to enable a patient organisation to respond to a health technology assessment or similar.
Although the requirements in Clause 19 relating to the provision of hospitality at meetings apply where pharmaceutical companies support patient organisation meetings and their representatives, in exceptional circumstances, in the case of clear health needs such as disability, companies can pay for subsistence, accommodation, genuine registration fees and reasonable travel costs for an accompanying carer.
The written agreement must include:
Even with the organisation’s permission the use of its logo or material must not be such as to otherwise breach the Code.
A list of patient organisations including the monetary value of support regardless of its level must be made publicly available by the end of the first quarter of 2013 and cover activities commenced on or after 1 January 2012 or ongoing on that date.
Until that information is made publicly available, the requirements for disclosure set out in Clause 23.7 of the 2011 Code of Practice and its supplementary information remain applicable.
An indication of the patient organisation’s total income and/or the company’s support as a percentage of the patient organisation’s total income may be given. Neither is obligatory.
Companies are encouraged to be prepared to make available upto- date information about such activities at any time in response to enquiries.
A list of patient organisations that have been engaged to provide significant contracted services must be published for the first time by the end of the first quarter of 2013 and cover activities commenced on or after 1 January 2012 or ongoing on that date.