The patient perspective is a key element of the European Cancer Congress’ collaborative innovation philosophy aimed at improving outcomes for patients. The ECC2015 scientific programme will provide a number of opportunities for healthcare professionals to learn about the patient perspective on pressing issues of cancer care.
Among these key issues are the clinical benefits of new drugs. Accurately assessing anticipated clinical benefits versus the risks of new anticancer therapies is a crucial part of licensing, reimbursement and clinical decision-making processes. However, an effective, standard format for the grading of clinical benefit has, so far, eluded the oncology field. At ECC2015, within the Regulatory Affairs Track, healthcare professionals and patients will discuss the “Magnitude of Clinical Benefit Scale for New Anticancer Drugs” which seeks to finally address this gap. Meaningful clinical benefit, of course, encompasses overall survival, progression free survival and therapies which avoid high levels of toxicity. Still, clinical benefit, for the patient, also means better quality of life, the ability to feel well enough to return to work, gaining independence again, and a host of other positive things. It is crucial to incorporate the patient perspective into the creation of this scale because all stakeholders involved in bringing a new therapy to people affected by cancer – study investigators, industry, clinicians, policy makers – must understand what constitutes a meaningful benefit to patients if such a scale is to have value in the real world.
Genetic testing is another key issue where it is important for healthcare professionals to be aware of patients’ understanding. In the era of biomarker-based medicine, molecular testing and genome sequencing, patients need more insight into their own specific situation. Their treatment might be quite unique depending on their tumour’s genetic profile, which may mean that they know no other patient who follows the same treatment pathway. In addition, genetic testing might give responses to answers no-one has asked, which may help to prevent or detect the outbreak of serious diseases early, but may also create unnecessary anxiety and fear about the future. Patients need an enhanced understanding of risks, benefits and probabilities in the context of genetic testing. This presents new challenges before healthcare professionals and patient organisations. Patient advocates need to be involved in both research and genetic testing to support researchers and physicians on ethical issues, assessment of opportunities and risks and patient-centric communication. There is a need to join forces to ensure any research, diagnostics and treatment meets the true needs of patients. This topic will be addressed by patient advocates within the programme of the Young Oncologists Track.
Patient advocates have also developed sessions addressing issues of the daily clinical practice of healthcare professionals such as communication skills that facilitate shared decision making and getting through when fear gets in the way. These key areas will be in focus in the Patient Advocacy track.
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