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 Working with patient groups – A charter for EuropaBio
Patient groups represent the interests of people living with diseases or disability. They provide education and support on how to manage their condition, and campaign for change around health issues driven by patients’ needs. Companies using biotechnology are playing an increasingly vital role in healthcare today as this technology provides novel ways to treat and prevent diseases often previously untreatable.
To meet the needs of patients by biotechnological advancements in healthcare and to assure the integrity and reputation of all parties, both patient groups and companies must work together within a clear framework.
In pursuit of the common interests of all the stakeholders, the EuropaBio Secretariat (the “Secretariat”) may undertake specific activities on a collaborative basis in tandem with patient groups active in the field. Such activities might include the organisation of events and meetings, the publication of educational materials and/or the development of information campaigns.
The key principles underlying this charter are openness and transparency. EuropaBio therefore undertakes to abide by the following conditions when working with patient groups:
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The independence and credibility of patient groups are paramount and shall be assured in all activities
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The Secretariat will not provide direct funding to individual organisations.
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Patient groups will not be asked to promote or advocate any specific treatments or products
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When working with patient groups written agreements must be in place setting out the activities agreed and the level of support either financial or in-kind
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Support will be provided for specific, collaborative activities directly related to benefiting patients.
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All support will be transparent and clearly acknowledge the role of EuropaBio.
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The Secretariat will publish annually on its internet site a list of patient groups that have benefited from participation in EuropaBio-organised or facilitated events, together with brief summaries of joint activities.
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Similarly, EuropaBio encourages patient groups to publicise their relationship with us
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All work with patient groups will be conducted on an equal basis - through consultation, with mutual respect, agreed common needs, goals and results
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In order to respect the independence of both parties, the Secretariat will have no editorial or other control over the output from patient groups resulting from such joint activities or how it is used by patient groups
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When working with patient groups, any third parties acting on behalf of EuropaBio must agree to abide by the same set of principles
Examples of areas for cooperation may include:
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Practical support in communicating patient needs, via publications, etc.
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Assistance to access EU funding by patient groups.
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Organisation of joint meetings with Commission staff, MEPs, etc.
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Organisation and production of events and other awareness-raising activities
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Mutual participation in meetings and conferences.
Patient groups will not be supported to act as advocates for industry policies. Where there are overlapping concerns support in kind for events may be provided to either enable patient groups to advocate for their own policies, or to advocate for access to products that will benefit their members. Support by The Secretariat for joint projects with patient groups has at its core the provision of mutual support and collaboration in the interest of advancing public health issues.
Brussels, May 2007
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