Patient advocates play a crucial role in supporting and informing cancer patients and caregivers and in providing valuable input into healthcare decision-making processes. In this setting, education of patient advocates becomes critical to ensure that patients are provided with accurate information and their input into healthcare decision-making processes is relevant.
Since ESMO 2016, the ESMO Patient Advocacy Track has been fully integrated into the congress programme, enabling patient advocates to attend the scientific sessions that are relevant to them as well as the patient advocacy sessions.
The Patient Advocates Track Sessions are designed by the ESMO Patient Advocates Working Group (PAWG) and represent an opportunity for all congress delegates to learn, share and explore areas of collaboration while discussing topical issues for patients and survivors that directly impact cancer care and medical research.
The ESMO Patient Advocacy Track addresses research topics that directly impact cancer care, obviously in addition to medical research. Demands for participatory medicine as well as financial constraints are changing the way oncology is practised today and have brought forward new fields of research, so we have sessions on patient outcomes research (Sunday) as well as health service research (Friday). Today's cancer patients are increasingly knowledgeable and connected. Patient advocacy groups are playing a major role in this and now increasingly leveraging the power of those patient networks for evidence-generation. The advocacy track is a good opportunity for anyone interested in this type of work to find out more!
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Bettina Ryll,
ESMO Patient Advocates Working Group Chair
Friday, 8 September 2017 - Room: Palma
Welcome, 14:00-14:30
Chairs: P. Casali (IT); B. Ryll (SE)
14:00-14:15 Welcome by ESMO, P. Casali (IT)
14:15-14:30 Welcome by the ESMO Patient Advocacy Working Group Chair, B. Ryll (SE)
Welcome by EACR
Science by patients for patients, 14:45-15:45
Chairs: B. Ryll (SE); C. Roffiaen, (IT)
Science by patients for patients, a form of Citizen Science, concerns two aspects of Science:
to ensure that Science addresses true patient needs and
to actively initiate, drive and conduct valid research as patients.
This ESMO session focused on the active part: how can we as patients and patient networks drive the research we need? What is the potential impact? And how do we acquire the necessary knowledge to be able to do so?
14:45-14:50 Introduction to the session, B. Ryll (SE)
14:50-15:05 Science and advocacy: Why care about science? How to involve patients in research, J. Geissler (DE)
15:05-15:20 How to run clinical trials that matters to patients, E. Low (UK)
15:20-15:35 The citizen scientist – statistics for citizens, D.Dahly (IE)
Health services research is the multidisciplinary field of scientific research that studies how social factors, financing systems, organizational structures and processes, policies and regulations, health technology, and personal behaviors affect access to health care, quality and cost of health care, and ultimately our health and well-being. The main goals of health services research are very important in cancer care as they help to identify the most effective ways to organize, manage, finance, and deliver high-quality care; reduce medical errors; and improve patient safety, improve patient safety and the outcomes and experience of cancer patients and contribute to cancer control
16:15-16:30 Health services research in Europe and its use for informing cancer policy, T. Albreht (SL)
16:30-16:45 Cancer patient experience from referral to hospital performance, G. Lyratzopoulos (UK)
16:45-16:55 What cancer patients want, K. Benn (IT)
16:55-17:05 The importance of healthcare system research for improving health in CEE, V. Voiculescu (RO)
17:05-17:15 Discussion
Debate: Working with industry – inherent conflicts of interest? 17:30-19:00
Chairs: J. Geissler (DE), D. Haerry (BE)
Collaboration between clinicians, industry, regulators and patients is essential to achieve faster, effective and safe therapeutic progress and to serve cancer patients better. However, a healthy, well-scrutinized relationship of clinicians and patients with the industry requires strict practices that protect all stakeholders’ credibility and independence, as regulated in numerous codes, guidance’s frameworks and policies. At the same time, overburdening the community with rules also carries the risk of stifling the feasibility of an effective, goal-oriented collaboration. Usually, the number of clinicians and patient experts with specific expertise is low in a community, so usually, the most knowledgeable people need to act as advisors for all stakeholders at the same time to make sure the right questions are being asked. This session will discuss the opportunities and controversies around the collaboration of patients and clinicians with the industry, including roles, interests as well as management of conflicts of interest.
17:30-17:37 Introduction on the opportunities and controversies of the collaboration, J. Geissler (DE)
17:37-17:44 A medical society’s perspective on disclosure and conflict of interest, P Casali (IT)
17:44-17:51 Does industry collaboration with clinicians and patient advocates compromise their objectivity?, N. Moll (BE)
17:51-17:58 The impartial patient voice when advising regulators and industry, D. Haerry, (BE)
17:58-18:05 A regulatory perspective on disclosure of interests of clinicians, patient experts and their organizations, Juan Garcia-Burgos (UK)
18:05-18:12 The media perspective on disclosure and conflict of interests, A. Wagstaff (UK)
18:12-19:00 Moderated discussion
Saturday, 9 September 2017; Room: Palma
Management side effects from Immunotherapy, 12:30-14:30 (Lunch 14:00-14:30)
Chairs: Ana-Maria Forsea (RO), G. Spurrier (FR)
12:30-12:45 Immuno-oncology: Overview of existing therapies and what is coming next? John Haanen (NL)
12:45-13:00 Predicting response to immune therapies, Tomas Kirchhoff, (US)
13:00-13:15 Interchangeability between immune therapies, Paolo Ascierto (IT)
13:15-13:30 The patient’s advocate perspective, G. Spurrier, (FR)
13:30-14:00 Discussion
Bio-ethical controversies and what they mean to research and European inequalities, 18:00-19:30
Chairs: Ananda Plate (BE), Geoffrey Henning (UK)
Biological and medical research and technological developments in health have produced spectacular advances over the last decades. However, some of these advances raise ethical issues that affect the individual and the protection of the individual’s rights and dignity, such as genetics, transplantation, biobanks, emerging technologies, etc. To what extend these rights need to be protected and when the protection starts going against the interest of the patient, is one of the aspects to be discussed in this session. Also, it is often the case that society moves slower than technology, which makes certain technically possible interventions ethically unacceptable for society, and therefore legally forbidden. Some of these barriers make it very difficult for researchers and clinicians to do their job properly. An overview of the differences of what is ethically acceptable in treatment and research in different countries will be given. These topics will be covered from the legal, academic, clinical and patient perspective.
18:00-18:15 The regulatory perspective, K. Steig (NO)
18:15-18:30 The academic perspective, I. De Leucona (ES)
18:30-18:45 The clinical researcher perspective, Speaker TBC
18.45-19:00 The patient perspective (incl. fertility), Louise Bayne (UK)
19:00-19:30 Discussion
Sunday, 10 September 2017; Room: Palma
What is it a good outcome? 12:00-14:30 (Lunch 14:00-14:30)
Chairs: Ian Banks (UK), Bettina Ryll (SE)
12:30-12:45 How to integrate qualitative research into clinical trials, Annmarie Nelson (UK)
12:45-13:00 What are meaningful patient outcomes and how to implement them, Eric Low (UK)
13:15-13:30 Measuring Quality of Life and deltas of perceptions between HCPs and patients, Laura Cannella (IT)
13:30-14:00 Discussion
Rare cancers: More common than you think, more difficult to serve, 18:00-19:30
Chairs: Kathy Oliver (UK), Jean-Yves Blay (FR)
Rare cancers are a challenge to clinical practice. Treatment experience – even in major cancer centers to which rare cancers are usually referred – is often limited, and new treatments are difficult to assess because too few patients are proposed for adequately powered clinical trials to determine the gold standard design of new regimens for establishing treatment efficacy. However, substantial advances in the treatment of some rare cancers have occurred as a result of national and international collaborative efforts, and a window of opportunity is provided by the development of the European Reference Networks (ERNs).
18:00-18:15 he EURORDIS table: Similarities and differences of rare cancers and rare diseases, Kathy Oliver (UK)
18:15-18:30 Joint actions on rare cancers, Paolo Casali (IT)
18:30-18:45 What EUROCAN, the European Reference Network for Rare Cancers, will do for patients, Jean-Yves Blay (FR)
18.45-19:00 The importance of adaptive pathways in rare cancers, Francesco Pignatti (UK)
19:00-19:30 Discussion
Monday, 11 September 2017; Room: Cartagena
The Hans Keulen Memorial Debate: Lost in rehabilitation, 12:30-14:30 (Lunch 14:00-14:30)
in collaboration with Advocacy in Action, brought to ESMO 2017 Congress by Vital Option International
Chairs: Kathy Oliver (UK), F. Meunier (BE)
This extended lunchtime session provided the opportunity for lively debate among all stakeholders in the cancer journey as we discuss the issues surrounding cancer rehabilitation, its availability and its effects on quality of life. What are the main research priorities in this field? How can we achieve truly interdisciplinary rehabilitation of cancer patients? Up to what point in the cancer journey should patients be offered rehabilitation? What can be done to raise awareness of this important treatment modality? Why should rehabilitation be part of the standard of care for every cancer patient?
Special Guests
Isabelle Lebroquy (NL)
Luzia Travado (PT)
Tanja Spanic (SL)
ESMO 2017 Patient Advocacy Track Supporters
The ESMO 2017 Patient Advocacy Track is kindly supported by the following companies:
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