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Working with the Pharmaceutical Industry -
our policy

Person responsible for policy: Director of Patient and Clinical Research Programs

Committee responsible for review and approval: Board of Trustees

Policy approved: August 2024

Approved by: Kate Rogers (CEO), Mike Thompson (Trustee)

Frequency of review: 2 years

Date of next review: August 2026

Introduction

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

To find a cure fast we need to work in collaboration with all stakeholders, including pharmaceutical and biotechnology companies. We select partners who work in the field of non-Hodgkin lymphoma, and who often have a particular focus on follicular lymphoma, whose engagement reflects a commitment to understanding the patient perspective and collaborating constructively with patient groups like the FLF.  We ensure we protect the data of any patients, by being clear and transparent about the use of data, securing their explicit consent, and ensuring this data is only used in programs and research that meets our Foundation’s goals.

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

Our commitment to patients

We will be transparent with patients about the commitments and partnerships we form with industry. We will proactively engage with patients to communicate our activities and the benefits these will bring to patients.  We will clearly specify to the pharmaceutical industry contact whether the interaction is a one-time occurrence or part of a recurring engagement.  This process will be governed by agreed and established principles.

Working with the Pharmaceutical Industry Policy

This Working with the Pharmaceutical Industry Policy (Policy) lays out how the FLF makes decisions in relation to working 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 the FLF works with the 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:

  • maintain and demonstrate our independence and impartiality
  • are transparent, consistent and fair when working with industry
  • remain true to our patient-centered 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

FLF principles for working with the Pharmaceutical and Biotech Industry:

  • 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 organizations we are working with and why. Details of companies we are working with will be published on our website and relevant any printed materials throughout a partnership.
  • Clarity of purpose: We will only work with pharmaceutical companies on projects that fit with the FLF’s strategic purpose.

Working principles

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

The FLF may receive funding from pharmaceutical companies for educational programs. The FLF may also engage with a range of companies that have, or are looking to develop drugs, treatments or diagnostic tests, for use in FL. These relationships may develop into FLF receiving further funding for FLF’s patient & scientific programs.

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 exclude any royalty payments due to the FLF.

  • Core operational funding: The percentage of funding from Pharmaceutical companies can change year on year at the discretion of the Trustees up to a maximum of 35% of total FLF income for core expenditure per annum. The rest of the FLF’s income (minimum 65%) will comprise of voluntary donations from individuals and fundraising activities. We currently receive no statutory funding from Government.
  • Project Programs: The percentage of funding from Pharmaceutical companies for Project Programs shall be 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. Best practice is a minimum of two Pharmaceutical companies for any individual activity of general patient facing work, symposia and summits. Sole Pharmaceutical company sponsorship is applicable to specialist projects.
  • Editorial Control: The FLF maintains decision-making independence in relation to projects, through Advisory & Decision Making Boards and editorial independence over any materials, meetings and agendas related to the project.  

All companies 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. We will include all financial partnerships with pharmaceutical companies on our website, alongside the activity.  

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 company.
  • 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 favor 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 CEO. The FLF will need to sign off usage of the logo in all instances of use e.g. marketing collateral, websites, social media to ensure adherence to the FLF brand guidelines.
  • FLF will terminate any working relationship with a company who is seeking to coerce or conform the work of the FLF to its agenda.
  • We recognize 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 organized events such as private or public meetings, training events, advisory board meetings and market research events or Pharmaceutical Industry involvement in FLF organized 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 FLF’s Conflicts of Interest Policy.