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ECCO Patient Advisory Committee (PAC) Activity Report since 2012

Last update: February 2017

European Cancer Congresses

January 2017 Patient perspective in ECCO2017 scientific tracks (sessions on regulatory issues, reviews of clinical trials, organisation of care, HTAs, etc.). Programme of patient advocacy track.

2015-2016 (Advice) 

PAC Chair participation in ECCO2017 Organising Committee meetings in the capacity of Co-Chair of the Congress. Suggestions of topics and speakers for ECCO2017 Congress scientific tracks. Development of patient advocacy track programme. PAC Chair appointed co-Chair of the Primary Care track.



Participation in ECC2015 Scientific Committee meeting followed up with suggestions of topics and patient advocacy speakers in scientific tracks. Development of the full programme of the patient advocacy track. More than 25 patient advocates spoke at ECC2015 and more than 130 attended as delegates.


(Advice & articles)
Development of the programme of the Patient Advocacy Track of the European Cancer Congress (ECC2013) in collaboration with ESMO representatives. A report of the patient advocacy track was produced with key messages and recommendations. Contribution with articles to congress newspapers.


November 2016 Input into ECCO position paper on improving access to innovation in cancer care 
Oct-Nov2016 Input into ECCO Position paper on Value of Specialised Cancer Nursing
May 2016 (Advice)

ECCO PAC provided initial comments to policy recommendations for Big Data in Public Health, Telemedicine and Healthcare as part of a European Commission’s project aiming to identify applicable examples of use of Big Data in Health and develop recommendations for their implementation. ECCO will be invited to participate in further discussions on this topic at EU level.


April 2016 (Advice) ECCO PAC contributed to ECCO’s comments on European Patients’ Forum (EPF) Roadmap on patient empowerment.

ECCO PAC representative’s participation in Oncopolicy Committee meeting on 9 February 2023 defining ECCO priority oncopolicy workstreams. ECCO PAC representative appointed member of the Oncopolicy Executive and participates in monthly teleconferences.

June-Dec 2015

December 2014

Participation in Oncopolicy Task force’ meetings and teleconferences to prepare recommendations to ECCO Board for oncopolicy plan 2016.

Participation in ‘Oncopolicy Task force’ meeting to define the way forward with oncopolicy activities.

September 2013
(Speaking & chairing)
ECCO Oncopolicy Forum 2013 – ECCO PAC members contributed by chairing and speaking in several sessions: Oncopolicy 2020: personalised cancer medicine.
October 2012
(Speaking & chairing)
ECCO Oncopolicy Forum 2012 – ECCO PAC members contributed by chairing and speaking in several sessions: The role of patients in personalised medicine development; educating patients as partners in personalised medicine

July 2012


Providing the patient perspective at the ECCO Research Forum organised in the context of the European Partnership for Action Against Cancer (EPAAC) in which ECCO was responsible for WP8: improved cancer research coordination in Europe.  Presentation: ‘The Patients view: One health outcome’.

Contributions to ECCO activities on European Partnership  for Action Against Cancer (EPAAC).


Quality Cancer Care

Summer 2016 Comments on ECCO ERQCC project and participation in working groups meetings. Authors in published papers on ERQCC in sarcomas and colorectal cancers  
23-24 May 2016 (Advice) Participation in Consensus meeting on ‘Essential requirements for quality cancer care’ (ERQCC) for colorectal cancer and

child and adult bone and soft tissue sarcomas.

June-Dec 2015 (Advice)

November 2014

Participation in ECCO «Quality Cancer Care Task Force» meetings to discuss possible ways forward for the ECCO Quality Criteria project with methodology experts.

Participation in ECCO “Quality Cancer Care Task Force” meeting defining ECCO activities in quality cancer care based on results of survey among ECCO member societies.  

June 2013 & June 2014
(Speaking & coaching)
Participation in Flims workshops: providing the patient perspective on good clinical trial design. Presentations and students mentorship.
May 2012
Nov 2012
Participation in ECCO Forum on Multidisciplinary Clinical Guidelines and working group meeting. Contribution to consensus paper on quality criteria for the development of multidisciplinary guidelines.

EU funded Projects

Summer 2016 Input into ECCO’s contribution to EU Joint Action on Comprehensive Cancer Control (CANCON)
Contribution to EU funded Eurocancercoms project WP5: assessing current on-line information needs of cancer patients particularly those who seek information using new media technologies. Advice on the survey questionnaire.

ECCO PAC Chair speaking at conferences on behalf of ECCO & media interviews

January 2016  ECCO PAC Chair representing ECCO at ESRC Seminar on Cancer & Employment (London, 21 Jan 2023) 
January 2015
Speaking at The Astellas Innovation debate.
November 2014
European Policy Centre – “Transformations: how pharmaceutical innovation is changing healthcare” (supported by Shire). Speaking on the role of patients in the development of innovative medicines (interview available on ECCO youtube channel).
September 2012
Interview with media journal ‘Oncology Times’.
June 2012
(Advice & Speaking)
Contribution and participation in Copenhagen Conference 2012 on “Gender and Health through Life” with support and participation from the Danish EU Presidency.

Activities with ECCO member societies

Summer 2016 Comments on EONS systematic review and meta-analysis of the evidence of effectiveness and value of cancer nursing (RECaN project)
September 2014
(Advice & speaking)
PAC Chair Meeting with EONS Board member to discuss input of patient’s perspective in EONS educational project.
September 2014
(Advice & speaking)
Contribution with topics and presentations at ESMO Advocacy in Action Forum at ESMO 2014 Congress
September 2013
(Advice & speaking)
Contribution with topics and presentations at ESMO Advocacy in Action Forum at ECC2013.
September 2013
Meeting with ESTRO to discuss input of patient’s perspective in ESTRO activities.

September 2012
(Advice & speaking)

Contribution with topics and co-chairing of the ESMO Advocacy in Action Forum at ESMO2012 Congress.


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