European Cancer Organisation

Terms of reference

Terms of Reference - ECCO Patient Advisory Committee (PAC) 2016 - 2018


1 Key objectives

1.1 Emphasising ECCO’s strong commitment to put patients at the centre of its activities, the Patient Advisory Committee (PAC) was established as an initiative of ECCO – the European CanCer Organisation. The PAC is funded solely by ECCO and its main function is to present the patients’ view to the ECCO Board on how ECCO’s vision & purpose* may be met.

1.2 Operating within the frame of ECCO, the PAC aims to provide advice on how to optimise ECCO patient centred activities. It will seek to position patient interests at the core of all ECCO initiatives by fostering an open dialogue with the ECCO Board.


2 Terms of reference

In its advisory capacity the PAC will provide a focus for patient-centred action within ECCO by:

Providing feedback on ECCO initiatives from the patient perspective. The PAC will be represented in all other ECCO committees and in all working groups that may be established by ECCO to address specific issues. The PAC will nominate one or more of its members to contribute to specific projects or activities making the best use of each PAC member’s expertise and availability. PAC members who represent the PAC on different ECCO working groups and ECCO initiatives will always report back to the PAC about their activity.

2.2 Pro-actively raising issues and suggesting activities to the ECCO Board which they believe require collaboration between patient advocates and cancer care professionals in order to improve outcomes for cancer patients in line with ECCO’s vision.

2.3 At the request of the Board, providing the patient perspective in the European Cancer Congress.

2.4 At the request of ECCO member societies, either directly contributing experience and/or advice to activities of ECCO member societies or alternatively referring ECCO member societies to patient advocates within or outside of the PAC with relevant expertise for the specific request. 

In accordance with the internal rules of ECCO, ECCO member societies that wish to receive advice from the ECCO PAC on specific activities will need to submit their request to ECCO  which will assess feasibility together with ECCO PAC members. All requests of this nature from ECCO member societies must comply with the following criteria.

  • in line with ECCO’s vision
  • include the patient perspective from the beginning of a project
  • have a clear work description, workload assessment and timeline

2.5 The PAC contribution and input into ECCO activities will be properly acknowledged with reference, as much as possible, to the names of PAC members and their organisations.

To fulfil its function the Patient Advisory Committee will:

  • Meet at least two times per year, preferably in the ECCO offices and hold between three to five teleconferences per year whilst maintaining open communication via email to encourage close collaboration and feedback on PAC related business.
  • Be supported by the ECCO staff.
  • Provide a report of each meeting to the ECCO Board.


3 Membership

3.1 The Committee will be composed to reflect the breadth of predominantly European cancer patient advocacy groups and may include other European public health patient advocacy groups who have a substantive interest in cancer while ensuring a majority of the seats assigned to European cancer patient advocacy groups. International cancer patient advocacy groups will be considered when there is no European equivalent covering the same disease area.  ECCO will seek to include individuals with an interest and expertise in ECCO priority areas in ‘Oncopolicy’ and in ‘Promoting the concept and practice of multidisciplinarity’.

3.2 PAC members will be nominated by their organisation.  The PAC will prepare a list of European/international patient advocacy groups and this will be submitted to the ECCO Board for approval.  Based on the PAC’s proposal, the ECCO Board will invite selected patient advocacy groups to nominate a representative to join the ECCO PAC. Groups will be asked to appoint one of their Board or Executive Committee member so as to facilitate the representative capacity.

3.3 The term of office will be two years with a further term of two years at the Board’s discretion based on recommendations from the PAC. A third term of two years will be accepted in the following circumstances:

  • there is no other representative with the requested expertise available from a selected patient advocacy organisation
  • it will ensure some degree of continuity in the PAC membership during periods of retirement of some PAC members and replacement with new PAC members.

3.4 Should a PAC member no longer be member of the organisation he/she is representing during his/her mandate on the PAC or is unable to complete the full term of his/her mandate, the organisation shall inform ECCO immediately and nominate a replacement.

3.5 The Committee will be empowered to co-opt additional experts on an ad hoc basis for particular tasks.

3.6 The Chief Executive Officer and the President of ECCO may attend meetings in an ex officio capacity and will receive all Committee papers. The ECCO supporting staff will always attend the meetings.

3.7 Duties

ECCO PAC members will:

  • Promote the interests of cancer patients
  • Report to the Board and/or Executive Committee of the organisation they are representing
  • Report to the PAC when contributing to ECCO working groups and activities in the capacity of PAC representatives
  • Record their specific areas of interest and expertise
  • Declare potential conflict of interests in line with ECCO internal rules
  • Attend ECCO PAC meetings and teleconferences (a substitute will be accepted in exceptional circumstances with the approval of the ECCO PAC Chair).


4 Chairmanship

Chair and co-Chair will be elected by the ECCO PAC among the members nominated by the invited patient advocacy groups.  Priority will be given to individuals who have already conducted a full term of office as ECCO PAC members. The elected Chair and co-Chair will be ratified by the ECCO Board of Directors.

4.1 Duties

The Chair will:

  • Promote the interest of cancer patients
  • Monitor progress of the Committee
  • Report to the ECCO Board on the activities of the PAC and receive mutual feedback as required in accordance with the internal rules of ECCO
  • Take decisions in consultation with the co-Chair and as much as possible with all PAC members
  • Have a seat on the ECCO Board with voting rights and attend ECCO Board meetings.  The ECCO PAC Chair will be empowered to co-opt the co-Chair to replace him/her in case it is not possible for him/her to attend a Board meeting. Under the decision of the Chair, another PAC member could be co-opted in the cases when neither the Chair neither the co-Chair are available while seeking a maximum degree of continuity
  • At the end of the mandate, with the view to renew PAC membership, submit a list of European/international patient advocacy groups to the ECCO Board for approval.

4.2 Qualities

The candidate for the Chairmanship function must have highly developed leadership skills, be an excellent communicator and skilful team player.

4.3 Relationships

  • Responsible to the ECCO Board.
  • The term of appointment will be 2 years in the first instance with a further term of two years at the Board’s discretion taking into consideration recommendations from the PAC. A third term will be accepted in exceptional circumstances to ensure some degree of continuity in the PAC membership.
  • Support will be provided by ECCO staff


5 Remuneration

Membership and co-Chairmanship of the ECCO Patient Advisory Committee are unpaid. Reasonable travel expenses will be reimbursed in accordance with the ECCO finance and support policy of all its committees.
Compensation for the organisation of the Chair of the ECCO Patient Advisory Committee will be provided in accordance with the internal rules of ECCO.


6  Conflict of Interest

ECCO Conflict of interest policy will apply to ECCO PAC members.


* ECCO’s vision is to improve outcomes for all cancer patients in Europe through multidisciplinarity. ECCO’s core purpose is to provide a cohesive platform that promotes the concept and practice of multidisciplinarity across all areas of cancer care, and to be the united voice of European cancer professionals to address common policy issues.

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