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Working with the Pharmaceutical Industry -
our policy

Policy approved: March 2021

Frequency of Review: 3 years

Date of Next Review: March 2024

Background

The mission of the Follicular Lymphoma Foundation (FLF) is to find new treatments and cures for patients living with Follicular Lymphoma.

Working in partnership includes collaborative working, partnerships and financial support from pharmaceutical companies which can bring huge benefits in helping to accelerate the development of new drugs and treatments.

Collaboration with all stakeholders

To find a cure fast we need to work in collaboration with all stakeholders, including pharmaceutical companies. Our biggest responsibility is to pick those partners with care and ensure that we protect the data of any patients that is shared with their explicit consent, and that this data is only used in programmes and research that meets our goals. We will be transparent with patients about the commitments we make to ensure that they are confident they are making the right decision to join this mission to find a cure.

This Working with the Pharmaceutical Industry Policy (Policy) therefore lays out how the FLF makes decisions in relation to working and partnering with the Pharmaceutical Industry. In this document Pharmaceutical Industry/Companies is taken to stand for all types of pharma, biotech/diagnostic companies, and medical device companies.

About the policy

This Policy defines how FLF works with Pharmaceutical Industry including the funding we receive and the way in which we conduct our relationship with them. This is important to ensure that we:

  • demonstrate our independence and impartiality
  • are transparent, consistent and fair when working with industry
  • maintain our integrity and reputation 
  • remain true to our patient-centred approach, putting patients at the heart of everything we do to ensure best possible outcomes
  • show our commitment to working collaboratively with pharmaceutical companies, alongside other stakeholders to improve patient outcomes
  • remain accountable to our stakeholders and our Board of Trustees

Working principles

What type(s) of funding would the FLF receive from pharmaceutical companies?

The FLF currently receives no income from pharmaceutical companies but is currently engaging with a range of companies that have or are looking to develop drugs, treatments or diagnostic tests for use in FL that may develop into FLF receiving funding.

What rules will we apply to income we receive from pharmaceutical companies?   The rules the FLF Board have set are that the total level of funding received from pharmaceutical companies on an annual basis shall be on the basis below. These excludes any royalty payments due to the FLF.

1)     Core operational funding: The percentage of funding from Pharmaceutical companies can change year on year at the discretion of the Trustees up to a range of 45% of total income for core expenditure per annum. The rest of the FLF’s income will comprise of voluntary donations from individuals and fundraising activities. We currently receive no statutory funding from Government.

2)     Project Programmes: The percentage of funding from Pharmaceutical companies for Project Programmes shall be at the discretion of the Trustees and decided on a case by case basis in line with this Policy. There is no requirement for an upper limit on income received from pharmaceutical companies in relation to these costs and no fixed proportion of how much one company can provide. A summary of decisions will be made available on request. The FLF maintains decision making independence in relation to project through Advisory & Decision Making Boards and editorial independence over any materials, meetings and agendas related to the project.  

All companies that the FLF collaborates with must adhere to their local Code of Practice such as the ABPI, EFPIA, PhRMA or IFPMA Codes of Practice.

The names of all pharmaceutical companies that the FLF receives income from will be listed on the FLF website along with the total amount received in the current financial year. All income and all significant donations in kind will also be listed in the FLF Annual Report and Financial Statement of Accounts.

  • Integrity – All partners must be aligned with the values of the FLF. We will always act with honesty and integrity in all that we do.
  • Independence – The FLF will ensure that it maintains independence of its decision making in all partnerships and editorial independence so that we are free to comment both positively and negatively about pharmaceutical companies and their products.
  • Transparency – All partnerships must be transparent. We will be clear on which organisations we are working with and why. Details of companies we are working with will be published on our website throughout the duration of a partnership.
  • Clarity of purpose: We will only work with pharmaceutical companies on projects that fit with the FLF’s strategic purpose.

What guidelines does the FLF follow when working with the Pharmaceutical Industry?

  • The FLF collaborates with a variety of companies, giving no preference to any one company in particular.
  • FLF will not disclose or share any confidential service user data with pharmaceutical companies or their agencies unless explicit consent has been given.
  • Our strategy, activities or information will not be influenced by our workings with Pharmaceutical Industry partners/collaborators.
  • We will not promote, endorse or favour any particular product.
  • A signed written agreement with all companies must be in place which outlines each partner’s contribution and responsibilities before the FLF accepts funding or agrees to a collaboration
  • Prior written approval for the use of the FLF logo or name must be agreed in writing with the FLF Director. The FLF will need to sign off usage of the logo in all instances of use eg marketing collateral, websites, social media to ensure adherence to the FLF brand guidelines.
  • FLF retains the right to terminate any working relationship with a company who is seeking to coerce or conform the work of the FLF to its agenda.
  • We recognise that individuals who work for pharmaceutical companies may wish to fundraise for FLF. Any such fundraising will not influence our work or information provided to people living FL.
  • The FLF will work with members of the Pharmaceutical Industry to share knowledge and expertise. This may involve the participation in Pharmaceutical Industry organised events such as private or public meetings, training events, advisory board meetings and market research events or Pharmaceutical Industry involvement in FLF organised events.
  • This Policy does not exclude FLF Trustees, advisors or staff working with or investing in the Pharmaceutical Industry in their private capacity but external interests must be declared in line with the FLFs Conflicts of Interest Policy.