ECPC involvement in research
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ECPC-European Cancer Patient Coalition participates in a number of EU funded projects - AGM 2014 -Bucharest Romania
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ECPC involvement in research
- 1. ECPC Involvement in Research Annual General Meeting 2014 Bucharest-Romania Kathi Apostolidis – Vice President ECPC
- 2. Participation in Research Projects in 2013 European Cancer Patient Coalition
- 3. Title: EPAAC- European Partnership for Action Against Cancer 2009-2014 Partners: Joint Action coordinated by the European & several EU member states 36 Associated Partners – 100 Collaborating Partners Objective: support MS in the development of their National Cancer Plans (NCPs) Deliverable: European Guide for Quality National Cancer Control Programmes Website: www.epaac.eu
- 4. European Cancer Patient Coalition
- 5. Title: eSMART (Electronic Symptom Management System Remote Technology) Partners: Six Universities, three University Hospitals, a healthcare system, a company, Project leader: University of Surrey Countries where the trial will take place: U.K., Ireland, Norway, Austria, Greece Objective: Demonstrate benefits for cancer patients using a real-time, mobile phone based remote patient monitoring system Website: http://www.surrey.ac.uk/esmart
- 6. eSMART European Cancer Patient Coalition
- 7. Title: EurocanPlatform- A European Platform for Translational Cancer Research Partners: 28 European Cancer Institutions and organizations Objective: improve cancer care from bench to bedside Website: http://eurocanplatform.eu/
- 9. • Title:: RareCareNet • Partners: • Objective: Best practice in integrated palliative care • Website: http://www.insup-c.eu/ European Cancer Patient Coalition
- 10. Title: RareCareNet - Information Network on Rare Cancers Partners: 10 Associated and 13 Collaborating Partners Objective: benchmark comprehensive cancer care & yield best practice examples to improve the quality of interdisciplinary patient treatment. Deliverable: Website: http://www.rarecarenet.eu/
- 11. • Title: InSup-C Integrated Palliative Care • Partners: 7 European countries- WHO-USA • Objective: Best practice in integrated palliative care • Website: http://www.insup- c.eu/ European Cancer Patient Coalition
- 12. Title: http://www.oeci.eu/Benchcan/ Partners: OECI-Organization of European Cancer Institutes Objective: improve the quality of interdisciplinary patient treatment.by benchmarking models of cancer care Website: http://www.oeci.eu/Benchcan/
- 14. Thank for your attention CHAMPIONING THE INTERESTS OF EUROPEAN CANCER PATIENTS email : kathi.apostolidis@ecpc.org @cancereu European Cancer Patient Coalition ECPCtv
Editor's Notes
- Good morning ladies and gentlemen,
- The Joint Action represents a common effort coordinated by the European Commission (DG SANCO) and several EU Member States to harmonise the way we fight cancer in Europe. A general objective of EPAAC for the period 2010-2013 is to contribute to the reduction of cancer burden in the EU by actions in the areas of health promotion and prevention, screening and early diagnosis, cancer related health care, coordination of cancer research and cancer information and data. The overall objective is to support Member States (MSs) in the development of their National Cancer Plans (NCPs). Integrated NCPs are public health programmes designed to ensure coordinated and centrally managed implementation of evidence-based strategies for prevention, early detection, diagnosis, treatment, rehabilitation, palliation and research for innovative solutions, and to evaluate outcomes. EPAAC helped to raise awareness about cancer promotion and prevention, especially among target groups in Europe, by disseminating the European Code Against Cancer using proven communication strategies and messages, and by engaging policy-makers at the European, national, and sub national levels.
- ECPC INVOLVEMENT ECPC was involved, as a horizontal stakeholder, in several work packages. Together with ECPC President, we attended EPAAC meetings, including the EPAAC Open Forum in Ljubljana in November 2013. In Ljubliana, the first main deliverable of the project was launched: “Boosting Innovation and Cooperation in European Cancer Control”. This volume explores some of the innovative strategies being deployed against cancer in Europe and how international collaboration has assisted in combating the cancer burden. It is a product of the European Partnership for Action Against Cancer (EPAAC) and it highlights some outstanding examples of how cooperation between national and international entities as well as policy-oriented innovation are contributing to the collective effort to control cancer. With a rising cancer burden in EU Member States over the last 30 years this is an important and timely call to arms. President De Lorenzo co authored Chapter 6, titled “Information for action: building a unified European Cancer Information System to bolster cancer control”. The final report of EPAAC is due to be published in Spring 2014.
- The eSMART project is a pioneering patient-centered research project that could transform cancer care and significantly reduce healthcare costs by enabling cancer care clinicians to monitor patients undergoing chemotherapy treatment for breast, bowel and blood cancers via mobile phone. The eSMART (Electronic Symptom Management System Remote Technology) trial involves provision of a mobile phone to cancer patients which contains an app-like programme, where patients identify and record their chemotherapy symptoms twice a day. This information is sent securely to a computer which assesses the symptoms and triggers an immediate alert to doctors or nurses if the patient requires assistance. The phone offers patients real time information and advice on how to manage their symptoms at home, without the need to travel to hospital. The eSMART researchers believe that through the use of the system, chemotherapy side effects will be reduced and the identification and treatment of life-threatening side effects will be quicker when compared to current care systems. eSMART has been granted €6 million from the European Union to fund a large trial of the system involving 1,000 patients in England, Austria, Greece, Holland, Ireland and Norway, with the hope that this type of patient monitoring will be integrated into routine cancer care in the future. The eSMART project aims to demonstrate benefits for cancer patients using a real-time, mobile phone based remote patient monitoring system, the Advanced Symptom Management System (ASyMS). It is anticipated to greatly improve patient outcomes and delivery of care both during and after chemotherapy treatment. Benefits to cancer patients undergoing chemotherapy include: Reduced symptom burden Improved quality of life Informed changes in clinical practice and delivery of care The eSMART project involves 11 European and 1 American partner as well as cancer care clinicians from all partner countries. A trial will be conducted across 16 European sites with 1108 patients being recruited. Patients will be invited onto the trial, with eligibility determined by a) undergoing their first course of chemotherapy, b) for breast, colorectal or haematological cancers and c) planning to receive a minimum of 4 cycles of chemotherapy. The project is being advised by members of the European Cancer Patient Coalition to ensure that work is conducted in line with patients’ perspectives and needs. eSMART will demonstrate how delivering patient focussed, anticipatory care via technology can improve outcomes for people with cancer whilst also addressing the issue of increasing demands on acute services across Europe. The following results are anticipated: Enhanced patient outcomes Improved patient quality of life Promotion of advances in cancer care Reduced social and economic barriers in cancer care Accelerated interoperability and collaboration across Europe Enhanced stimulation of the national health markets
- EurocanPlatform aims at decreasing cancer mortality by dealing with three main areas of strategic research: prevention, early detection and improved treatments. There will be a strong focus on translational cancer research in five selected tumours: breast, head-neck, lung, malignant melanoma and pancreatic cancer. In this project, ECPC’s role lies in contributing to the construction of a knowledge system explaining cancer, its origin, prevention mechanisms, treatment and outcomes to the patient community and to the general public. ECPC will assist the platform members in organizing public outreach activities during ECCO congresses, ECPC masterclasses and patient s’ workshops, OECI meetings. EurocanPlatform is an EC funded project bringing together 28 European cancer Institutions and organisations to work together in a unique collaboration. The centres are sharing infrastructures and collaborating on projects to help advance cancer research and treatment. The overarching aim of the project is to improve outcomes for cancer patients and reduce mortality. This is being achieved by focusing on three key areas of research: prevention, early detection and improved treatments. EurocanPlatform is building the necessary resources and know-how to improve cancer care from bench to bedside: basic research, early and late translational research, clinical research, epidemiological research, implementation in care and population based outcome research. The following aims have been set for the Platform; harmonisation and sharing of infrastructures and competences among organisations, definition and coordination of specific areas for research collaboration, optimisation of knowledge-sharing, provide adequate training opportunities, promote mobility of researchers attractive for young researchers from all over the world, retaining European talent, providing strategic partnerships for the pharmaceutical and biotechnology industry, accelerating translational research for the benefit of patients. This is the first time this collaboration has been attempted and promises real results for cancer patients across Europe. The Karolinska Institutet is leading this project, please visit the contact page if you have an enquiry.
- RareCareNet project aims at building an information network in order to provide comprehensive information on rare cancers to the community at large (e.g. oncologists, general practitioners, researchers, health authorities and patients). Within this project ECPC will build a network of patients’ organizations and treatment centres and will provide information material to cancer patients in order to facilitate prevention, diagnosis and treatment. This is important due to the challenges faced by rare cancer patients among whom we could mention: late or incorrect diagnosis, lack of access to appropriate therapies and clinical expertise and a dearth of clinical trials. If you are or know a patient organization working with rare cancer patients, please get in touch with us. The project aims at building an information network to provide comprehensive information on rare cancers to the community at large (oncologists, general practitioners, researchers, health authorities, patients). The final objectives are to improve the timeliness and accuracy of diagnosis, to facilitate the access to high quality treatment for patients with rare cancers, to identify centres of expertise for rare cancers in Europe and to standardize practices across Member States (MS).
- InSup-C aims to identify best practice in integrated palliative care (IPC) by examining models of care delivery across a number of European countries. The study will focus on people with advanced cancer and on those in the later stages of chronic illness, specifically chronic heart failure (CHF) and lung disease (COPD). It will deliver recommendations on best practice in IPC and on the best professional skill mix and organisational systems required to achieve optimal care. How will the project run? Beginning with a systematic review of relevant literature, the project will use a mixed methods approach to establish a taxonomy (general classification) of IPC models. This innovative study places the patient and carer voice at the centre of its approach. As such, we will gather service user experiences of interacting with and accessing IPC services by following participants on their palliative care journey Study results will be disseminated throughout the course of the project using a variety of media. These will include conference presentations, blogs, scientific publications and reports, culminating with a book of examples of best practice. An invitational conference will target policy and other decision makers at the highest European institutional level to ensure maximum impact of the study findings. In time, a dedicated website will host an e-learning platform and checklists against which services can benchmark their own palliative care service provision. We anticipate that the work of InSup-C will significantly contribute to our understanding of what works best in delivering IPC in a European context, but will be applicable in other geographical areas and for a range of patients with complex or chronic care needs. InSup-C is a truly collaborative effort and has the potential to improve the care we provide to those facing chronic long-term decline and death across Europe and perhaps beyond. If we are able to do something to ease this passage, we will have succeeded. InSup-C consortium members USA Who is doing the research? IInSup-C is funded under the European Union (FP7) Seventh Framework Programme. It will run for four years ending in late 2016. The consortium partners are from seven European countries with representation from the World Health Organization and the USA. InSup-C partner institutions will take the lead on six discrete work packages. We plan to work together on all phases of the study to ensure a thorough examination of IPC in order to achieve the project aims.
- BENCH-CAN contributes to objective 2 of the Health Programme of the European Union “Promote health”, including the reduction of health inequalities & contributes to implementation of priority 3.2.4 “prevention of major and rare diseases”. It also addresses the basic principles of ‘Together for Health’; complements EPAAC WPs (healthcare and cancer data & information); and will inform Pillar B (Care and cure) of the Strategic Implementation Plan of the European Innovation Platform for Active and Healthy Ageing.