Index
Preamble
‘The European Patients’ Academy on Therapeutic Innovation’ is an innovative project within the Training & Education Pillar of the Innovative Medicines Initiative. A particularly innovative aspect of the project is the unique composition of the Consortium partners that comprises a mix of umbrella patient organisations, academia, non-governmental organisations and industry, all with a strong track record in medicine, patient engagement and education, and several of which have not previously worked together.
The Consortium believes strongly that a critical success factor for the Patients’ Academy to achieve its goals, whilst maintaining the credibility, quality and resonance of our work, will be the strength of the collaboration between the partners and the creation of an environment and working culture for each of us to contribute our expertise, knowledge and competence in a constructive, productive way, and in a spirit of respect and dynamism.
The ‘EUPATI Code of Conduct’ outlines the working culture and spirit of “assumed good intent” within the Project Consortium, while the ‘Ethical Framework’ outlines the ethical ground rules of the project. The Code of Conduct is part of the formal Project Agreement to demonstrate the importance we attach to achieving the best possible modus operandi for the project.
Premise
This Code is based on the conviction that:
- A strong partnership such as the EUPATI project between patient organisations, academia, pharmaceutical industry and other partners is likely to generate benefits for all parties involved beyond the project itself. This is described in the Patient Partner guides on patient involvement in clinical research [1] and the Value + handbook for project promoters See: http://www.eu-patient.eu/globalassets/projects/valueplus/doc_epf_handbook.pdf
- The integrity, credibility and independence of all involved partners, as well as the constraints and obligations under which all partners operate, should be respected at all times.
- A partnership in which the integrity and credibility of all parties concerned are upheld should be underpinned by core principles and values.
- The perspective of patients is unique in nature and therefore should be valued as specialist knowledge that is different from the professional knowledge of other experts, academia and members of the pharmaceutical industry. Within EUPATI, the main conduit for this consists of patient umbrella Consortium members which combine the collective experience of their members’ outreach at national, regional and local level.
The principles of collaboration between EUPATI partners
Mutual Respect
Central to the EUPATI Consortium is that all partners act in accordance with the principles of mutual respect.
This implies that all partners’ competences, capabilities, working culture and environment shall be taken into account, understood and respected as we move forward together towards the project’s goals.
Trust
The EUPATI Consortium partners will work together in a spirit of mutual trust and assumed good intent. This will be underpinned by openness and clarity of communication, and genuinely shared efforts and responsibilities to contribute to common goals, although the methodology and rationale may differ across the partnership.
Reliability And Responsibility
For the EUPATI project to achieve its goals, all partners within the Consortium need to rely on each other to adhere to the Partnership Agreement, as negotiated at the beginning of the project.
A periodic review of the partnership will take place by the EUPATI Executive Committee, to evaluate the progress based on goals, objectives and terms agreed by all partners at the beginning of the collaboration.
In the event of conflict or dispute between EUPATI Consortium members, this will be addressed by the EUPATI Executive Committee, which will attempt to resolve it collectively, reflecting the spirit of this Code.
Transparency
EUPATI Consortium partners agree to open, honest and fair communication between each other.
This includes:
- Clarity about each partner’s roles and responsibilities in the partnership;
- Being open about the constraints under which each party is operating;
- Publicly disclosing any other personal and institutional relationships and collaborations that might influence the partnership, as described in the Ethics Framework
- Acknowledging each partner’s role and contributions when reporting on the outcomes that resulted from the partnership.
- Showing that the resources contributed by each party to the partnership have been used appropriately as described in the Project Partnership Agreement
- Any activity jointly undertaken with a patient organisation should operate within the constitution, articles and codes of practice of the patient organisation.
- Partners’ independence should not be compromised or perceived as being compromised because of collaboration with fellow partners.
- No partner should seek to gain competitive advantage/or use confidential information from the partnership for its own gain.
- In relation to the in-kind support from pharmaceutical industry for EUPATI, the rules as described in the EFPIA Code of Practice on Relationships between the Pharmaceutical Industry and Patient Organisations should be adhered to.
Accountability
In order to achieve accountability, EUPATI Consortium partners should agree on the ways in which they will report back to their members, colleagues, partners and general public about their collaboration.
Acknowledgement
The way in which any resource or product developed in the framework of the EUPATI project is acknowledged should be agreed in advance.
The terms for the use of the EUPATI name, brand and or logo by any partner must be discussed ex ante.
Ownership and intellectual property rights of materials produced in the collaboration should be agreed upon upfront.
The terms for acknowledgement of EUPATI informational materials or other EUPATI outcomes should be discussed before an agreement is reached on how the Consortium members individually acknowledge the collective outcomes of EUPATI.
Sustainability
- The results of EUPATI should be made public during and beyond the lifetime of the project, to create maximum value for the whole community rather than direct recipients of EUPATI’s resources; all partners should share in the responsibility of the dissemination of these results.
- The opportunities for a longer term relationship between EUPATI Consortium partners should be explored in the context of the sustainability and extension of the project beyond its lifetime. The sustainability concept and updating process will be developed by WP7 with consortium members and advisors.
Acknowledgement
We would like to thank the Patient Partner project for sharing its draft Code of Conduct which we have used as a source of inspiration.
