European Cancer Organisation

Advocates in Action

Operating within ECCO’s framework, the Patient Advisory Committee (PAC) proactively addresses issues and challenges faced by cancer patients, helping ECCO to position patients’ interests at the core of its activities.

ECCO is committed to engaging cancer patient advocates in its mission to uphold the right of all European cancer patients to the best possible treatment and care.

The ECCO PAC provides insight from the patient perspective on initiatives, issues and projects that foster ECCO’s mission, as follows:




ECCO Forum on Multidisciplinary Clinical Guidelines in Oncology

Last update: 27 March 2013

In 2012 ECCO established a forum to discuss the need for coordination of guideline development and the potential role of ECCO.  A working group composed of representatives from the ECCO member societies and other relevant European organisations was mandated to deliver a consensus paper on quality criteria for the development of multidisciplinary guidelines as well as defining the added value of an endorsement process by ECCO.  Sema Erdem, member of the ECCO Patient Advisory Committee (PAC) participated in the working group.

Based on the consensus paper presented by the Chair of the working group, Dr Dirk Schrijvers, to the ECCO Board on 12 February 2013, the following quality criteria and the ECCO role were agreed upon by the ECCO Board. Among these it is requiring to have Representatives of patient organizations involved in the guideline development when patient care is included in the scope of the guideline.

ECCO Quality criteria:

  • Guidelines are multidisciplinary and developed with the involvement of representatives of the relevant European societies
  • Guidelines are developed using validated methodologies that are explicit and transparent
  • A conflict of interest policy is in place and transparent
  • Representatives of patient organizations are involved in the guideline development when patient care is included in the scope of the guideline

Role of ECCO:

  • ECCO will serve as a switchboard for its members and other European societies to inform each other of the development of new multidisciplinary guidelines so that all interested societies can be involved. This functionality is offered to ECCO members and other European societies as a way to facilitate collaboration between relevant disciplines and develop multidisciplinary guidelines. It is not required to use this switchboard to subsequently submit the guidelines for ECCO endorsement.
  • Upon submission by the development group, ECCO will endorse multidisciplinary guidelines that fulfill the quality criteria.
  • ECCO will disseminate the European multidisciplinary guidelines that have been endorsed. This will be done notably through a dedicated webpage (with links).
  • ECCO will represent the voice of oncology on European oncology guidelines at the EU policy level.

An action plan is under development to implement the ECCO Board's decisions.





ECCO Oncopolicy Forum, 2012


Last update: 15 December 2012

ECCO’s Oncopolicy Forum is an innovative platform for inspiring cancer policy debate at EU level. It brings together a multi-stakeholder audience spanning the entire oncology spectrum.

The October 2012 Oncopolicy Forum discussed the scientific, ethical, financial and practical challenges of making personalised cancer medicine a reality.

ECCO Patient Advisory Committee (PAC) actively contributed to the discussion.

The role of patients in personalised medicine development

Ian Banks, ECCO PAC Chair, and Jan Geissler, ECCO PAC member, discussed the difficulties associated with such discrepancies in treatment availability and outline the contribution cancer patient groups and the ECCO Patient Advisory Committee, can make to informing patients about personalised therapies, and helping clinicians understand what patients expect from new treatments.

Educating Patients as partners in Personalised Medicine

ECCO PAC member, Jan Geissler, talked about ‘educating patients as partners in personalised medicine’. In his presentation, Jan seeked to define why patients need to understand both the benefits and challenges of personalised medicine, for example, in terms of giving their consent, improving outcome, collaborating with research, considering trial participation, and being aware of any limitations of personalised medicine.

The session Oncopolicy 2020 – personalised cancer medicine: The way forward was chaired by Ian Banks, Chair of the ECCO PAC.




European Partnership for Action Against Cancer (EPAAC), Research Forum


Last update: 25 September 2012

The European Partnership for Action Against Cancer (EPAAC) is a Joint Action that supports EU Member States in their efforts to tackle cancer. It provides a framework for identifying and sharing information, capacity and expertise in cancer prevention and control. It also engages relevant stakeholders across the European Union in a collective effort to address cancer.

ECCO is leading Work Package 8, which aims to develop a concerted approach to achieve coordination of one third of research from all funding sources by 2013 within selected areas of cancer research.

On 2 July 2012, ECCO organised a Research Forum to help pave the way for improved cancer research coordination in Europe in which Ian Banks, ECCO PAC Chair, talked about ‘The Patients view: One health outcome’. 



Health Literacy


Last update: 25 September 2012

It is now well accepted that women and men pick up and act upon health information quite differently. Information failing to recognise this fact can limit or even worsen reverse positive outcomes. Gender-based cancer information has been shown to significantly improve outcomes through better patient concordance with treatment programmes. There are many variations on targeting such as age, education, occupation or cultural background, but the only badly recognised differentiation is that of gender.

Conference & Roundtable discussion: 14 & 15 June 2012, Copenhagen

Source: Ian Banks, Chair ECCO Patient Advisory Committee (PAC)

During the Danish EU Presidency Conference on 14 June 2012 entitled Gender & Health through Life, experts in health literacy and navigation held a roundtable discussion on the need for better targeted cancer information for patients by gender. Approximately fifteen experts in these areas addressed the way forward for gender-based cancer information enabling early diagnosis and treatment.

This discussion forms an important starting point for the ECCO PAC to initiate a project on health literacy with a view to producing a report and toolkit for patient organisations. This will help them to produce more effective patient information on cancer.

Conference organisers: European Men’s Health Forum; European Patients’ Forum; European Cancer Patient Coalition; and Men’s Health Society, Denmark. It was supported by the Danish Ministry of Equality.








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