Code of Conduct

The International Kidney Cancer Coalition (IKCC) welcomes corporate donations, grants and sponsorship to fund certain projects and to enable the Coalition to grow and develop. This document outlines IKCC’s policy on commercial funding and provides a set of principles that are used to guide IKCC’s decisions. It does not set out to provide a definition of every possible funding opportunity. This policy will apply to all potential relations with any company from any industry.

This policy is based on the UK Breast Cancer Coalition’s Policy Paper on Funding Arrangements with Commercial/Corporate Organisations, EURORDIS’s policy on corporate sponsorship, the recommendations of the UK’s Long Term Medical Conditions Alliance and Sarcoma Patients EuroNet Association.

Preamble

Many interests and stakeholders interact in our healthcare systems. Patient organisations have a role to ensure that the patients’ voice is heard at all levels of decision making, implementation and monitoring of policies and actions that concern health and healthcare and that the existing system achieves the best outcome for society. Patient organisations have a vital interest in interacting and communicating with stakeholders, including healthcare professionals, medical experts, regulators, scientists, industry, etc. — in the interest of their patients. Good communications embrace trust, integrity, honesty and openness.

The valuable and serious work of patient organisations and the service they provide needs to be recognised, valued and supported. However, most groups are struggling to find sufficient, diversified resources, to fulfill their mission and objectives and remain independent, whether funding comes from corporate or public sources. Funding support for international activities is difficult to obtain. It very much depends on the organisation raising its own financial resources and relying largely on volunteers to do the work.

Credibility, transparency, independence and democracy are the most treasured assets of patient organisations. Every organisation aims to be in a position to carry out its work based on the support of purely altruistic charitable contributions. However, there are only very few non-commercial sources prepared to fund patient organisations at a international level. This poses an ongoing challenge to all international patient organisations, networks, and coalitions.

There is a need to develop a strategy that balances corporate funding with funding from other sources. We owe it to all affiliated organisations and patients globally, who trust us to act in a fully democratic, independent and transparent manner, according to the highest standards of good governance. We derive our legitimacy from our affiliate organisations, our statutes and our democratically elected boards, many of whom are patients, caregivers or survivors who volunteer their time and expertise.

Patients’ organisations are keen to work in a constructive manner together with all stakeholders to ensure that the integrity of their organisation is safeguarded.

IKCC’s “Code of Conduct” is as follows:

A. Purpose of Policy

  • To ensure IKCC has a consistent and transparent approach to working with commercial companies.
  • To ensure IKCC maintains its independence from commercial influences. IKCC reserves the right to terminate any project or partnership where agreements have been transgressed or where the relationship contravenes IKCC’s “Code of Conduct”.
  • To clarify IKCC’s position to patients, its affiliate organisations, commercial companies and the wider public.
  • To provide clear direction for the Coalition’s Board of Directors, enabling them to initiate relations with commercial companies with the full backing and endorsement from the affiliated organisations who comprise the Coalition.

IKCC’s Board of Directors is expected to adhere to this policy that is reviewed annually but may be revised as circumstances demand.

B. Funding: Categories

There are different funding categories, including:

Project funding is where the Coalition will establish a collaborative partnership with a commercial company to undertake a project relating to an issue of mutual interest.  The following features will apply to this relationship:

  • IKCC maintains editorial control over all materials produced in connection with the project
  • The company will have representation on the project steering committee
  • The sponsor’s logo can be used – in negotiations with the company
  • IKCC will not endorse or promote the company or its individual products or services
  • The wording and/or position of the credit will be agreed upon in negotiations with the company
  • IKCC and the commercial partners will both benefit from the relationship

Sponsorship is where a company funds a single activity such as a meeting or newsletter. In this case the following will apply:

  • The company has no involvement in the activity for which the sponsorship is granted
  • IKCC maintains editorial control over all materials or meeting programmes
  • IKCC will not endorse or promote the sponsor or its individual products or services
  • The sponsor’s logo can be used – in negotiations with the company
  • The wording and/or position of the credit are part of the sponsorship negotiations with the company
  • IKCC and the commercial partners will both benefit from the relationship

Unrestricted grants are defined where all of the following apply:

  • The company has no involvement in the project for which the grant is used
  • The grant will be acknowledged
  • The company’s logo is not used
  • The Coalition controls the wording and placement of the credit
  • IKCC will not endorse or promote the company or its individual products or services

Core funding: Funds for core activities will always be received on an unconditional basis. To avoid undue reliance on any particular company, such funds will be balanced and diversified as much as possible to avoid conflicts of interest and to guarantee independence.

Companies may offer financial donations and in-kind support to the Coalition however there is no obligation on the part of the Coalition to acknowledge the support, although IKCC may decide to do so.

C. Sustaining Partnership

IKCC “Sustaining Partners” are commercial companies that want to establish a long-term relationship with the Coalition and wish to demonstrate their commitment to kidney cancer patients by helping IKCC promote global understanding of the burden of kidney cancer and the right of patients to effective early diagnosis detection, better treatment and supportive care.

A “Sustaining Partner” that donates a minimum of 40,000 EUROS or more per year receives in that year:

  • Recognition as a Sustaining Partner on the IKCC Website and other communication materials of the Coalition.
  • Direct link from and to the Websites. (This is only possible in negotiations with the company and in accordance to the legal regulations.)
  • Opportunity to meet the IKCC Board of Directores at an annual “Sustaining Partner Meeting” to discuss issues of concern to both commercial organisations and kidney cancer patients.
  • Opportunity to propose collaborative projects which will have priority status over those proposed by Non-Sustaining Partners.
  • Regular e-mail updates on IKCC’s activities.

D. Funding: Guiding Principles

IKCC will foster dialogue and establish collaborative partnerships with companies/ trusts/funds/charitable organisations whose commercial decisions affect the survival and quality of life of kidney cancer patients.

Partnerships between Patient organisation and pharmaceutical companies are sometimes viewed with scepticism by decision-makers, the media and the general public. Some people believe pharmaceutical companies may coerce patient organisations into conforming to their marketing agenda. In order to protect the Coalition’s reputation and demonstrate that IKCC does not conform to commercial agendas, the Coalition will adhere to the following principles when accepting project funding, core funding, sponsorship, grants or donations from commercial companies/trusts/ funds/charitable organisations:

  • IKCC will maintain an open and transparent relationship with all commercial and non-commercial partners.
  • Where possible, IKCC will solicit funding from consortia composed of two or more companies from the same industry (known as “multi-sponsoring”).
  • Before accepting funding the IKCC Board of Directors must be satisfied that there are strong grounds for believing the donation, grant or sponsorship will result in benefit to the Coalition and its members.
  • IKCC will closely review all potential commercial partners’ corporate governance policies, their reputation in working with patient organisations and their environmental policies and practices. If there is any cause for concern, the Coalition will reject the funds.
  • IKCC will not endorse or promote a company or its individual products or services. The purpose of the Coalition is to inform affiliate organisations independently and not to promote or recommend special therapies, services, clinical trials or off-label use of therapies.
  • A company’s support will be acknowledged in an appropriate way following discussions with the company concerned.

IKCC commercial partners must agree to abide with the guidelines outlined in “Section E” below.
If a company makes any attempt to coerce the Coalition to conform to its marketing agenda, either explicitly or implicitly, or does not conform to the agreement, IKCC will reject the funds or terminate an ongoing project.

E. Guidelines for Commercial Companies

The Coalition will not embark upon or continue with any sponsorship, grant making or collaborative venture that might damage its reputation or result in the dissemination of biased and inaccurate information to the general public and/or cancer patients. Therefore, when working with the Coalition, commercial companies should adhere to the following guidelines:

1. The Coalition must be consulted whenever and wherever its name is used, particularly in external communications. Approval must be sought for any text or copy produced which refers to a Coalition initiative supported by a commercial organisation.

2. At no time can the IKCC logo be used without expressed written permission from the Board of Directors.

3. At no time can Press Releases be issued which refer to the Coalition without prior approval of the Board of Directors. Likewise suggested quotes can be prepared but must always be agreed by the Board of Directors.

4. The Coalition retains a veto over all materials produced in connection with an initiative. Adequate approval time needs to be allowed for this as it may require approval from one or more members of the Board of Directors.

5. All materials produced as part of an initiative of the Coalition will be in full compliance with the applicable legislation on information and advertising of medicinal products and will be impartial as to products discussed.

6. For all projects where the Coalition may be working in collaboration with a company and/or agency, clear lines of communication need to be established with agreement on respective responsibilities and assignments to ensure smooth progress with the project. The Coalition will have one point of contact identified within the company.

7. All correspondence to IKCC should be directed to the Administrative Team or to the elected Board of Directors not to individual members. The Board of Directors will delegate special responsibilities to individual Board members such as the relationship management to commercial companies.