The European Cancer Patient Coalition and its central role in connecting stakeholders to advance patient‐centric solutions in the mission on cancer

Abstract

There is an urgent need for solutions to the economic and social inequalities in cancer care that still exist in many European countries. Patient preferences, ‘big data’, mobile digital technology and molecular and genomic profiling are among the innovative research topics that connect cancer patients to comprehensive cancer centres, and link translational research to cancer diagnosis, treatment and care. The question is whether Europe can deliver the complex infrastructure needed for universal coverage and equitable access to cancer care. The European Cancer Patient Coalition ( ECPC ), the leading ‘umbrella’ cancer patient organisation in Europe, has a central role in bringing the unmet needs of patients with cancer to the forefront of cancer policy, care and research. The ECPC is a respected and reliable partner in the oncology community and has effectively collaborated with institutional stakeholders and organisations, as well as with the European Commission, on cancer research projects and in the development of tools to advance health care and cancer policies at the European and national level. The ECPC believes that innovation cannot emerge and grow without patient involvement and is fully committed to increasing patient education and contribution in cancer research through its active participation in various European cancer research programmes and educational resources. The ECPC is expected to play a major role in the mission on cancer, given its previous achievements in policy and research to help overcome the inequalities in cancer prevention, treatment, rehabilitation and survivorship care. The mission on cancer will be facilitated by active collaboration between patient organisations and scientists, clinicians, politicians and industry, with the aim of identifying important research questions regarding quality of life and social issues for cancer patients of all ages.

Towards a cancer mission in Horizon Europe: recommendations

“…In traditional research, patient participation was largely limited to being the subject of research. Currently, there is a significant cultural shift that increasingly ensures that real-life experiences of patients are considered when determining priorities in research areas [86].…”

Towards a mission‐oriented approach to cancer in Europe: an unmet need in cancer research policy

“…As mentioned earlier, the EACS is committed to support the mission and is ready to provide evidence‐based advice to underpin policies that allow solutions and inform society of the benefits of research (Adami et al ., ). In addition, patient organizations are willing to support the mission by engaging in sustained policy activities (see article by De Lorenzo and Apostolidis, ).…”

What could be a cancer mission objective if we join our forces in the fight against cancer?

“…10 The ECPC white paper "Challenging the Europe of disparities," launched in 2015, called for a harmonized HTA relative effectiveness assessment as a potential to reduce workload, create efficiencies, and underpin speedier patient access to life-preserving medicines by reducing delays. 11 The ECPC has created momentum on EU cooperation in HTA during the process of amending regulation 726/2004, "laying down community procedures for the authorization and supervision of medicinal products for human and veterinary use and establishing a European Medicines Agency," when the proposed amendments were voted by the European Parliament in March 2016. The ECPC response to the European Commission (EC)'s 2017 consultation on "Strengthening of the EU cooperation on health technology assessment" stated that increased EU cooperation will not only significantly reduce costs and duplication across HTA bodies, but decrease delays in access to innovative medicines, facilitate participation of patient organizations in the HTA decision-making process, and facilitate access to market.…”

“…9 The European Union's next mission-oriented Framework Programme for research and innovation, Horizon Europe, should provide funding opportunities specifically aimed at supporting treatment optimization and academic trials such those of the EORTC. 11 Clinical research and access to innovation could also be improved all over Europe with clear links between networks from rich countries and networks for lower-income countries.…”