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Patient empowerment
To improve the healthcare systems while addressing unmet needs, patient empowerment should focus on the practical aspects of having patients at the centered of shared decision-making. Our recommendations include:
- Support primary and secondary prevention with a focus on individuals with modifiable risk.
- Involve patients and patient organizations in prioritizing therapeutic research areas.
- Support rehabilitation research, and research focussing on health-related quality of life issues (supportive care, psychosocial oncology, palliative care and survivorship) including patients and families for shared decision-making.
- Involve patients and patient advocacy organizations in prioritizing research areas in outcomes research and health economics. This should also include assessment of the socio-economic impact on patients and their families (/households/ relatives/dependents and caregivers), and the identification of patient groups particularly vulnerable to impairments of their socio-economic situation due to cancer and cancer care.
- In areas where research focuses on how to decrease present inequalities, patients and patient organizations should be enabled to play a pro-active role.
- Shared decision-making should ensure that all medical and social consequences of a cancer diagnosis are considered.
- Education is a prerequisite to reach the goals of the mission. Both European Cancer Patient Coalition (ECPC), Association of European Cancer Leagues and SIOPE have extended educational programmes for patients, relatives and the public. Increase collaborations with CCCs and consortia of research centres will be necessary to further expand the educational activities.
- Communication and diffusion of information are vital to bring science and technology to society and to emphasize their importance for generating science-driven and social changes that impact the lives of patients. The mission governing body, cancer patient organizations, national cancer societies, universities and hospitals, policymakers as well as the press, should broadly disseminate the information.