ESMO 2016: Patient Advocacy Track

A new concept for the ESMO 2016 Patient Advocacy Track

Bettina Ryll, Chair of the ESMO Patient Advocates Working Group explains the new concept of the ESMO Advocacy Track. 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 both ensure that patients are provided with accurate information and the input into healthcare decision-making processes is relevant.

As the role of the patient advocate increases, remaining educated on the latest developments ensures that your input into healthcare decision-making processes is relevant, and that patients are provided with accurate information. With this in mind, a new format for the Patient Advocacy Track at ESMO 2016 will address the specific needs of the advocacy community in oncology.

Traditionally, patient advocacy sessions were held in parallel to the main scientific sessions, often preventing advocates from attending sessions relevant to their disease. For this reason, advocacy-specific activities will take place on Friday 7 October and in parallel to industry-sponsored satellite symposia during lunch and early evening.

In addition, cancer-specific sessions of potential interest to advocates will be highlighted and introduced, while the possibility to attend sessions from the Public Health and Health Economics, Supportive Care and Immunotherapy tracks will ensure an enriched congress experience.

Friday 7 October 2016 Room: Warsaw

Welcome

Friday 7 October, 14:00-14:30, Room Warsaw, 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)

Knowledge is power

Friday 7 October, 14:45-15:45, Room Warsaw, Chair: K. Apostolidis, BE

  • 14:45-15:00 Facilitating patient advocates scientific learning at SABCS, S. Stanford (US)
  • 15:00-15:15 From research on patients to patient researchers, M. Seres (UK)
  • 15:15-15:30 How to educate yourself in research and development: EUPATI the European Patient Academy for Therapeutical Innovation, J. Geissler (DE)
  • 15:30-15:45 Discussion

Knowledge leads to options allowing us to make decisions and be in control. That is having power. It enables us to participate in our care, making decisions about our health together with our doctor, and may lead to better results for our health. More and more patients and physicians turn to “participatory medicine”, made possible by patient access to all kinds of information and physicians acknowledging patients newly acquired expertise.

No time to waste. Patient networks driving research

Friday 7 October, 16:15-17:15, Room Warsaw, Chairs: J. Geissler (DE); E. Low (UK)

  • 16:15-16:30 Partnerships, Priorities, Pirates and Limes: the story of a patient-focused approach to identifying unanswered research questions, K. Oliver (UK)
  • 16:30-16:45 Running your own clinical trials: The myeloma clinical trials network, E. Low (UK)
  • 16:45-17:00 Research and drug development for patient groups, TBC
  • 17:00-17:15 Re-purposing of drugs, P. Pantziarka (UK)

Myths and reality: Cancer and pregnancy

Friday 7 October, 17:30-18:45 Chairs: J. Apperley, UK; G. Sharf, IL

  • 17:30-17:40 Patient’s perspective, TBC
  • 17:40-17:55 Despite cancer: Challenges and public awareness, TBC
  • 17:55-18:10 Consideration for maintaining fertility during cancer treatment, J. Apperley (UK)
  • 18:10-18:20 Building the evidence based for saving mother and child: The Pan-Eu pregnancy registry, F. Amant (BE)
  • 18:20-18:30 A patient-run cancer and pregnancy registry, G. Sharf (IL)
  • 18:30-18:45 Discussion

Saturday 8 October 2016 Room: Zagreb

Accessing innovative treatments in Europe: Managed entry/risk sharing schemes for pharmaceuticals

Saturday 8 October, 09:15-10:45, Room Zagreb, Chairs: B. Ryll (SE); P. Kanavos (UK)

  • 09:15-09:30 Introduction to Managed Entry Schemes, P. Kanavos (UK)
  • 09:30-09:45 The Early Access to Medicines Scheme (EAMS) in the UK, D. O'Connor (UK)
  • 09:45-10:00 The Italian Pay-for-Performance Scheme, TBC
  • 10:00-10:15 The Dutch experience: DMTR, M. Wouters (NL)
  • 10:15-10:30 Patient advocacy involvement, V. Astratinei (NL)
  • 10:30-10:45 Discussion: How to get involved, B. Ryll (SE)

This session aims to give an introductory overview of the different types of agreements including concrete examples from different European countries and a concluding discussion on how clinicians and patients can influence the decision process.

Cancer inequalities: Bring me solutions not just the problems!

Saturday 8 October, 13:00-14:30, Room Zagreb, Chairs: A. Eniu (RO); I. Banks (BE) (12:30-13:00, grab your lunch before the session!)

  • 13:00-13:10 Mapping cancer disparities: What we know so far, A.-M. Forsea (RO)
  • 13:10-13:20 The 70:35 vision: What we can achieve, P. Selby (UK)
  • 13:20-14:30 Panel discussion: Practical actions to be taken, F. De Lorenzo, P. Selby

Glaring inequalities exist across Europe when it comes to cancer burden, rooted in heavy disparities in cancer prevention, early diagnosis, management and survivorship. Patients, care givers and treating physicians are burdened by them. Do we need to be fatalistic over this? Should we just shrug our collective shoulders? The key is improved sharing and implementation of good practice, quality cancer registration, focused research and equitable access to optimal treatments.

Adherence to therapy: How hard is it to swallow? 

Saturday 8 October, 18:00-19:30, Room Zagreb, Chairs: J. Pelouchova (CZ); A. Aguaron (AF)

  • 18:00-18:20 Nonadherence: why it happens and what we should do about it, R. Horne (UK)
  • 18:20-18:40 Why don’t cancer patients take their drugs as prescribed? Learnings on the patient perspective from the global CML Adherence Study, G. Sharf (IL)
  • 18:40-19:00 Why does drug packaging influence adherence? G. Standhard (NL)
  • 19:00-19:30 Discussion

Only cancer drugs that are taken can actually work. Contrary to what people may expect, a significant share of cancer patients do not take their cancer drugs as prescribed. Oncologists need to understand the driving factors and characteristics of patients which drive non-adherence to cancer therapies, in order to improve outcomes of those patients at risk.

Sunday 9 October 2016 Room: Zagreb

Adaptive licensing (MAPPs)

Sunday 9 October, 09:15-10:45, Room Zagreb, Chairs: P. Casali (IT); B. Ryll (SE)

  • 09:15-09:30 Regulatory perspectives in MAPPs and the EMA pilot, F. Pignatti (UK)
  • 09:30-09:45 MAPPS from the HTA perspective, S. Garner (UK)
  • 09:45-10:00 The industry perspective, R. Bergstrom (BE)
  • 10:00-10:15 A clinician’s perspective: Learning from the rare disease community, P. Casali (IT)
  • 10:15-10:30 The patient perspective: Patientcentric drug development, B. Ryll (SE)
  • 10:30-10:45 Discussion: Challenges, P. Casali, B. Ryll

Building on existing regulatory processes – scientific advice, conditional approval, compassionate use and structures for risk management like patient registries and pharmocovigilance tools – MAPPs replace the current single event of drug registration by an iterative process of data gathering and evaluation, fundamentally altering the way of drug development. MAPPs are a prospectively planned process involving all stakeholders, so understanding the different perspectives is crucial.

Immuno-Oncology (I.O.)

Sunday 9 October, 13:00-14:30, Room Zagreb, Chairs: M. Wartenberg (DE); R. Giles (NL) (12:30-13:00, grab your lunch before the session!)

  • 13:00-13:15 How to use the immune system to fight cancer and how different types of immune therapies work? P. Nathan (UK)
  • 13:15-13:30 Practical experiences and challenges of patients and patient groups with Immuno-Oncology: Our experiences in research & clinic using IO in melanoma, G. Spurrier-Bernard (FR)
  • 13:30-13:45 Practical experiences and challenges of patients and patient groups with Immuno-Oncology: Our experiences in research & clinic using IO in lung cancer, S. Vallone (IT)
  • 13:45-14:00 Practical experiences and challenges of patients and patient groups with Immuno-Oncology: Our experiences in research & clinic using IO in kidney cancer, R. Giles (NL)
  • 14:00-14:30 Panel Discussion: M. Wartenberg, R. Giles

Immuno-oncology (IO) therapy is a new (and old) way to treat cancer by activating the immune system in the hope that it will attack the tumour. A number of immune therapies have been developed and trialled over the last century, but side effects, cost and variable benefits have limited their usefulness, but IO therapies are certainly one of the biggest breakthroughs in cancer treatment for a very long time.

Learning more about side effects: Why they matter and how to collect them

Sunday 9 October, 18:00-19:30, Room Zagreb, Chairs: G. Spurrier-Bernard (FR); A. Plate (BE)

  • 18:00-18:15 Why the reporting of side-effects is so important, D. Athanasiou (GR)
  • 18:15-18:30 How differently clinicians, patients and carers perceive side effects, A. Plate (BE)
  • 18:30-18:45 New drugs that are safe -pharmacovigilance in oncology, TBC
  • 18:45-19:00 Innovative ways to record treatment side effects in clinical trials, S. O'Brien (UK)
  • 19:00-19:15 Patient networks driving adverse event reporting: The UMC/ MPNE project,R. Chandler (SE)
  • 19:15-19:30 Discussion: what can we as patient advocates do to – increase the safety of our therapies? – ensure that side effects are evalued according to the true impact for patients?

This session will present results from a survey that highlights how differently cancer patients and doctors perceive side effects. It will also explore reasons why patients sometimes don’t report side-effects. It will highlight systems by which patients can directly and effectively report side-effects to his/her doctor, to pharmacovigilance systems and through mobile apps in clinical trials. It will also provide an insight how patient organisations are effectively driving side effect reporting today

Monday 10 October 2016 Room: Zagreb

The Hans Keulen Memorial Debate. Palliative care: is it suffering from an identity crisis?

Monday 10 October, 13:00-14:30, Room Zagreb, Chairs: S. Rauh (LU); K. Oliver (UK) (12:30-13:00, grab your lunch before the session!)

  • 13:00-14:30 Moderated discussion, K. Oliver, S. Rauh

In collaboration with Advocacy in Action, brought to ESMO 2016 by Vital Options International

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