ESMO-ECPC Survivorship Guide
ECPC President Francesco De Lorenzo, together with ESMO President Fortunato Ciardiello, launched the ESMO-ECPC Survivorship Guide at a press conference and at an event at the ESMO booth. The Patient Guide on Survivorship has been created by the European Society of Medical Oncology and the European Cancer Patient Coalition in collaboration the International Psycho-Oncology Society in order to help cancer survivors find new pathways to a satisfactory and normal life. It includes a checklist that cancer survivors can use in collaboration with their healthcare team to quickly and easily ensure an optimal survivorship care plan based on rehabilitation, late effect and second cancer prevention, as well as smooth return to work. This tool will facilitate and empower collaboration between patient and health professional.
ECPC Francesco President De Lorenzo and Projects Coordinator Isabelle Manneh-Vangramberen presented Poster #1450P on 10 September. The poster session was attended by ECPC Director Lydia Makaroff and ECPC Community & Communications Manager Anna Rek.
ECPC’s European survey of 907 people with cancer about the importance of nutrition Abstract #3714 was published in the Annals of Oncology, encompassing the perspectives of patients and their physicians on nutritional issues.
The European Cancer Patient Coalition is also currently working on the “Living Well During Cancer Nutrition Booklet”, Series I out of II, that will be launched on 9 November hosted by MEP Daciana Sarbu at the European Parliament, survey results, and a Cancer Patient’s Charter of Rights for Appropriate and Prompt Nutritional Support to be adapted at the European level.
Value of Innovation
ECPC Director Lydia Makaroff presented a Poster Discussion on the Value of Innovation in Oncology. The ECPC White Paper on the Value of Innovation in Oncology was developed to indicate the central role of patients, as well as to help policy-makers understand how they can improve patients’ access to innovation in medicines, radiotherapy, surgery and general cancer care and treatment. It makes recommendations for sustainable and equitable access to innovative cancer treatments and care pathways. ECPC’s mission is to keep advocating for the best access to innovation for cancer patients around the Europe.
Cancer Drug Development Forum Health Technology Assessment Workshop
ECPC President, Francesco De Lorenzo, co-chaired a multi-stakeholder workshop on the Access to Innovative Oncology Drugs in Europe. ECPC Board member Dan Cimpoeru gave a presentation on what cancer patients need from a European health technology assessment. The meeting was also attended by ECPC Vice President Kathi Apostolidis and ECPC Director Lydia Makaroff. The Cancer Drug Development Forum Health Technology Assessment Workshop was co-organised by the European Cancer Patient Coalition, and facilitated a collaborative discussion between regulatory bodies, Health Technology Assessment organisations, healthcare providers, academics, patients, and industry on the challenges of equal access to oncology drugs within and between European countries. ECPC has been continuously involved in ensuring that the cancer patients’ view is included in the Health Technology Assessment regulation process.
Follow the link to find out more: Cancer Drug Development Forum Health Technology Assessment Workshop
Health Services Research
ECPC Vice-President Kathi Apostolidis chaired a session in the Patient Advocacy Track on health services research. As an applied field of research, health services research is undertaken primarily to inform health care policy. However, the relationship between policy and health services research is not straightforward. Many policies are developed without taking account of available evidence. The session provided an overview of the infrastructure and capacity of health services research in Europe and explored the links between health services research and policy in European countries.
ECPC President Francesco De Lorenzo chaired an educational session on the “micro-economics” of cancer: How the medical oncologist should micro-manage limited resources. It included discussions on micro-allocation of limited resources in the clinic, as well as how should the medical oncologist negotiate with local health administrators.
Francesco De Lorenzo highlighted the critical role that medical oncologists have in managing limited resources in the clinic. It can be challenging for a medical oncologist to deliver the most appropriate therapy if the hospital budget cannot accommodate the cost of the treatment. Most patient organisations are unaware of this ethical challenge faced by medical oncologists. Decisions about micro-allocation of limited resources in the clinic should be made by the entire healthcare team, and not just left to medical oncologists. The best solution to address limited resources is for patient organisations and medical oncologists to form an alliance, and work together to raise this issue with politicians and request more resources.
National Comprehensive Cancer Network
ECPC Board member Natacha Bolanos spoke at the National Comprehensive Cancer Network Global Patient Advocacy Engagement Roundtable. The National Comprehensive Cancer Network is a not-for-profit alliance of 27 leading cancer centers dedicated to improving the quality, effectiveness, and efficiency of cancer care. This event was also attended by Francesco De Lorenzo, Kathi Apostolidis, and Lydia Makaroff.
Rare Cancers Europe
Francesco De Lorenzo, Lydia Makaroff, and Isabelle Manneh-Vangramberen participated in the Rare Cancers Europe meeting. During the discussion, Francesco De Lorenzo spoke about the activities of the ECPC Rare Cancer Working Group, the European Reference Networks, and the Joint Action on Rare Cancers. He emphasises the importance of patients and clinicians to work together with the Joint Action on Rare Cancer, in order to ensure new drugs become available to all Europeans with cancer as soon as possible, no matter where they live.
Isabelle Manneh-Vangramberen followed up with information on the RCE-ESO-ESMO Patient Advocacy training course. Francesco De Lorenzo will be moderating a brainstorming session at the European Rare Cancer Patient Café titled ‘Do elderly patients in the rare cancers community get a bad deal because of their age?’. Isabelle Manneh-Vangramberen will be moderating the session on ‘Clinical research in rare cancers’ and sharing best practices in the session ‘Advocacy & Lobbying: Speaking up for Rare Cancers’.
Rare Cancers Europe is a multi-stakeholder initiative dedicated to putting rare cancers firmly on the European policy agenda and to implementing 39 political and stakeholder recommendations.
ECPC Vice President Kathi Apostolidis and ECPC Director Lydia Makaroff attended a stakeholder meeting of the All.Can initiative, while ECPC President Francesco De Lorenzo was an author on the poster All.Can initiative: improving efficiency in cancer care. The All.Can initiative aims to bring together people from all sectors to determine what matters most to cancer patients. It develops policy recommendations that tackle inefficiencies, promote innovation and better allocate resources for sustainable cancer care.
Isabelle Manneh-Vangramberen, EU Project Coordinator, participated in the European Reference Network on Rare Adult Solid (EURACAN) Tumours Steering Committee held on 9 September, where she announced the launch of ERN-EURACAN online presence. Isabelle also participated in the European Patient Advocacy Group (ePAG) meeting held on 10 September where she presented the European Comission Guidleines on Dissemination and Communication and shared knowledge on the creation of patient education material across the various domains. The meeting was also attended by a Japanese rare cancer organisation that was looking at best practices across the EU.
The European Cancer Patient Coalition is one of the patient organisations representing the needs, rights and hopes of adult rare solid cancer patients in the EURACAN European Reference Network as an elected Patient Advocacy Group member and the Co-Lead of the Dissemination & Communications Task Force. The 24 European Refrence Networks are working on a range of thematic issues, gathering the largest network of active EU centers involved in the management of people with rare diseases. EURACAN is a patient-centered multi-domain European Reference Network that distinguishes rare adult tumor cancers into 10 domains. European Patient Advocacy Groups (ePAGs) actively participate in the governance of all the European Reference Networks.
Collaboration for Oncology Data in Europe (CODE)
ECPC Board member Dan Cimpoeru and ECPC Director Lydia Makaroff attended a stakeholder meeting of the Collaboration for Oncology Data in Europe (CODE). The Collaboration for Oncology Data in Europe is supporting the creation of a large-scale Oncology Data Network that will collate comprehensive, up-to-date data to describe how anti-cancer medicines are actually used in clinical practice. The technology platform has been designed to be able to aggregate data on anti-cancer medicine usage for all forms of cancer, in all patients and for all treatment centers across Europe who wish to join.
ESMO Patient Advocates Working Group
The European Cancer Patient Coalition, as a member of the ESMO Patient Advocates Working Group (PAWG), actively participates in the process of making sure that patients are in the centre of the ongoing discussions. The ESMO PAWG main mission is the optimization of patient care in Europe and worldwide, the continuous improvement of cancer-specific information and education, the strengthening of patient autonomy and the support of patient rights. In 2017, the European Cancer Patient Coalition is represented by Vice President Kathi Apostolidis. In 2018, the European Cancer Patient Coalition will be represented by Audit Committee member Nicolas Philippou.
Community and Communications
The European Cancer Patient Coalition stand in the Society Village was hosted by Community & Communications Manager Anna Rek. During the meeting, Anna Rek met with ECPC Members from around Europe, including the UK, Finland, Turkey, Spain, Italy, Greece, Poland, and Romania. She also co-ordinated the ECPC social media activities on both Twitter and Facebook.