5. Empower Cancer Patients and Survivors: The Importance of Education and Information
As elaborated before, cancer patients and survivors suffer from a wide range of issues as a consequence of their cancer and their cancer treatment, often significantly detrimenting their quality of life. Beyond the need for health systems to address these issues, cancer patients and survivors also deserve to receive relevant and adapted information to help them meet the challenges they face. Such information should cover all the aspects of their cancer survivorship, including access to specialist care and support services addressing both physical and psycho-social impacts of cancer and cancer treatment. Provision of such information can be embedded within survivorship care plans.
Furthermore, carefully adapted and relevant information should be provided at each stage of their journey as a cancer patient. Since decisions regarding treatment and care options received by patients at the early stages of their cancer journey can impact their quality of life decades later, cancer patients must be offered clear and understandable information concerning the possible consequences of each option for them. In doing so, health systems will allow cancer patients to participate in information-based shared-decision-making and to give a truly informed consent to the provision of cancer treatment and care options to them.
Information needs relate not only to treatment of course, by many connected areas, such as general health and wellbeing promotion, and also key aspects of personal nutrition and diet.
The advance of digital technology, including portable digital devices and smartphone applications, is creating bountiful new opportunities and fresh practices to learn from when it comes to innovative means of providing timely advice and information to cancer patients and survivors. Though care must be continually paid to prevent misinformation also being conveyed by these means. This emphasises the need for health systems to be actively engaged in this arena and not to leave the area open to individuals and organisations with an interest in conveying unscientific and potentially harmful information.
Beyond being only informed, the understood aim should be to ensure cancer patients are truly empowered. Patient empowerment is defined by the World Health Organization as ''a process through which people gain greater control over decisions and actions affecting their health''106. There is substantial evidence that patient engagement and empowerment have the potential to improve not only patient satisfaction with care but also the quality of care provided, as well as patient outcomes107.
Thus, developing and supporting health literacy and empowerment tools tailored to cancer patients and survivors concerning the long-term consequences of their cancer and their cancer treatment is of particular relevance to meet the European cancer survivorship and quality of life challenge. The European Code of Cancer Practice recently launched by the European Cancer Organisation represents a prominent example of a patient empowerment tool in this regard. Co-produced by a team of cancer patients, patient advocates and oncology professionals, the Code is a simple, accessible, widely disseminated statement of the core general requirements for best cancer practice in order to improve outcomes for all of Europe’s cancer patients.
The Code sets out a series of ten key overarching rights to support European citizens and patients, and in particular signposts what they should expect from their health system, in order to achieve the best possible outcomes. Translated into more than 20 European languages, among the Code’s ten rights, three of them focus more specifically on later stages of the cancer journey and are therefore of particular relevance to long-term cancer patients and survivors:
• The right to receive optimal supportive and palliative care, as relevant, during any part of the patient’s cancer journey;
• The right to receive and discuss with the patient’s care team a clear, managed and achievable plan for his/her survivorship and rehabilitation; and
• The right to be fully reintegrated into society and protected from cancer-related stigma and discrimination, so that, in so far as is possible, patients can return to work and a normal life108.
Patient advocacy and support organisations have become an ever-growing source of high-quality information for individuals with cancer, and their carers, in addition to what may be received directly from healthcare professionals and health systems. Patient organisations can be especially important in respect of helping address needs that a given health system may not be adequately covering for cancer patients. Simple measures - without high investment cost - for addressing these gaps on the patient journey should include patient and carer referral by healthcare institutions and healthcare professionals to patient organisations at the first diagnosis stage and additionally, later on, at various crossroads on the cancer patient pathway. During the current COVID-19 period, it’s particularly vital that the sustainability of patient organisations is not jeopardised by the pandemic. A financial safety net during this crisis should urgently be put in place by governments to help secure the viability of patient organisations, many of which rely on in-person events to raise vital funding for cancer research and patient support. During the pandemic, such events have had to be cancelled, resulting in significant funding reductions for patient organisations to use for their crucial work.
