CLDF Policy Statement:
Framework for working with the pharmaceutical industry and associated agencies

The purpose of this policy is to provide clear principles and guidance about how CLDF works with pharmaceutical companies.

Background

The Children’s Liver Disease Foundation (CLDF) recognises the importance of collaborating with pharmaceutical companies and the potential benefits that a successful partnership can bring not only to both parties and but also to children with liver disease and the families. However, it is essential that any relationship is based on the highest ethical standards, openness and transparency, Thus, CLDF will, not allow l these companies to influence its strategic direction, activities or positions. We will not limit support to or from a single company to prevent accusations of undue influence on our policies. We will not give any one company exclusivity in its support for each project and service development (in line with Clause 27.4 of the ABPI Code of Practice for pharmaceutical companies).

Rationale for working with pharmaceuticals including types of funding

It can be beneficial for CLDF  to work with those pharmaceutical companies which manufacture or market medicines, manufacture diagnostic tests or otherwise provide support for the diagnosis or management of children with liver conditions. These partnerships give CLDF important information and early insight as well as providing further opportunities to raise awareness of these rare conditions and improving the quality of care for those affected. Charities may collaborate with industry in the following ways:

• Research and development – providing patient insights and co-funding research
• Policy and advocacy – influencing policy in the research sphere across the healthcare landscape
• Sponsorship – industry working with charities to sponsor events such as conferences and meetings, or supporting other forms of communication (e.g. patient information, educational materials)
• Campaigning – working together on specific campaigns or lobbying (e.g. to highlight patient need for the adoption of a new drug by the NHS)
• Raising awareness – ensuring the pubic, health professionals, regulators, commissioners and politicians aware of the significance and impact of liver disease in children

As a charity, CLDF must raise funds on a continual basis in order to execute our charitable functions and for this reason receive funding and sponsorship from a variety of sources including pharmaceutical companies. This can be in the form of educational grants or funding for specific activities and events undertaken by CLDF. Funding from pharmaceutical companies may be received in the following ways:

• Core funding – funding is donated as an unrestricted grant to support our ongoing projects and services
• Donations in kind – where a company donates services or assets to support a project
• Project funding – funding is donated to support a specific project of mutual interest and benefit to those affected by childhood liver conditions

General guidelines

• All companies collaborating with CLDF must either be members of the Association of British Pharmaceutical Industry (ABPI) or adhere to the ABPI Code of Practice where relevant and applicable. The ABPI Code of Practice for the Pharmaceutical Industry sets out the obligations of companies when working with patient organisations.
• No relationship will be entered into which may compromise that independence. CLDF will not promote, endorse or favour any specific brand of product
• CLDF will ensure companies do not influence strategy, activities or information
• Financial support will only be accepted where the chief executive, or appointed deputy, is satisfied that no significant damage to reputation will accrue from accepting such support
• CLDF will not share or disclose any confidential information regarding its service users, medical professional contacts or supporters to pharmaceutical companies or their agencies unless specific consent has been provided.
• To ensure transparency CLDF will acknowledge any work with companies in relation to specific projects through relevant media and PR work. CLDF will include the sponsor’s logo on all written communications associated with the project. A summary of the financial contributions from pharmaceutical companies will be reported in the annual report in line with Charity Commission procedures.
• CLDF’s name and logo must not be used by companies or agencies without prior consultation and approval from the chief executive or appointed deputy. Use of the CLDF logo must be in line with our brand guidelines. Press releases and quotes referring to or provided by CLDF must be authorised/approved by the chief executive, appointed deputy and/or our PR and Communications Manager.

Termination

CLDF reserve the right to terminate any agreement or project where an attempt has been made to influence the charity’s strategy and activities, where the guidelines or agreement have not been adhered to, or where the continuation of the relationship may damage the charity’s reputation. In the event of a termination, funds may be returned to the company in accordance with relevant written agreements of the project.

Postholder responsible for document: Chief Executive

Approved by the Trustees : 22^nd June 2021

Review date:  January 2023