Making sure that Europe's 'Beating Cancer Plan' works for patients

The European Patients’ Forum (EPF) welcomes the publication of the European Commission’s “Europe’s Beating Cancer Plan”.

Cancer is the second leading cause of death and disability in the EU - it carries with it a huge societal and personal burden due to premature deaths, loss of productivity and the costs associated with its treatment and care. Cancer is known for frequently intersecting with other chronic diseases, increasing the complexity, burden and cost of possible treatments for patients. Besides, certain chronic diseases share risk factors cancer or even predispose patients to certain types of cancer.

To better tackle these complexities, the Cancer Plan will need to build cost-efficient synergies with other ongoing initiatives (e.g. the Horizon Europe’s Cancer Mission, and the European Partnership for Health Innovation). It will require a “Health in All Policies” approach, recognising the role of non-health sectors as determinants of patients’ health. In our view, an effective Cancer Plan may lead to benefits for other chronic diseases, including a better understanding of the links between diseases, improved quality of care, a holistic patient-centred approach, survivorship issues, non-discrimination, and redressing health inequalities.

EPF’s view on the Cancer Plan

In our response to the public consultation in May 2020 we highlighted several priorities that we wished to see as part of the Cancer Plan. These can be read in full here).

EPF welcomes its comprehensive approach that aims to tackle the entire continuum from prevention, early detection and diagnosis to treatment, and quality of life of cancer patients as well as survivorship issues. The Plan also puts forward positive actions to tackle some environmental determinants of cancer.

We welcome the recognition of financial discrimination faced by cancer survivors, such as in insurance. The Cancer Plan mentions examine practices in financial and insurance services from the point of view of fairness towards cancer survivors in long term remission. It will be important to develop and implement actions in collaboration with patient groups representing cancer patients and survivors.

The Plan emphasises the need for better collecting and using health data – to tackle inequalities, survivorship, advance research, etc., while benefiting from the upcoming European Health Data Space.

Below, we suggest areas where we would like to see stronger actions:

EPF recommendations

Screening is well covered in the Cancer Plan with flagship initiatives aiming to widen access to screening. However, we miss clear recommendations to Member States to tackle the access barriers experienced by patients with regard to diagnosis,[1] whilst the impact of the proposed measures remains to be seen. It is key that patients’ organisations at national level are involved in implementing and evaluating the measures.
We recommend Member States consider evidence-based policies to reduce inequalities in access, including coverage, reimbursement, user-charges and co-payments – a problem in many countries.
One tool to redress inequities in access to treatment would be using the Cross-Border Healthcare Directive and Regulation to enable patients to access treatments that are not available in their own country. This should be a consideration in the review of the Directive.
We also believe it is important to identify ways to enable patients’ access to clinical trials across borders – participating in clinical trials is of supreme importance and the only treatment option for certain cancer patients.[2]
The proposed actions can contribute to tackling barriers concerning access to cancer treatment, including therapies, medicines and other care. However, their success will depend to a large extent on effective synergies with the EU Pharmaceutical Strategy. To facilitate access to effective treatments, it is vital to implement the EU framework on Health Technology Assessment and consider joint procurement strategies.[3]
Health literacy is mentioned only in the context of cancer prevention. However, it is also a vital strategy to empower patients in the context of diagnosis and choice of treatment options, as well as supporting self-management and coping. Health literacy is also an important strategy to reduce health inequalities. EPF therefore calls for a comprehensive strategy and action plan on health literacy to be developed, which should extend beyond the health sector to also include other sectors, e.g., education.[4]

Patient involvement is key in developing and implementing the Cancer Plan

Through the Cancer Mission, which is part of the upcoming research programme Horizon Europe, the Cancer Plan foresees financing research and innovation on the area of cancer. For these to bring concrete added value, EU-funded research consortiums must ensure that patients are included and compensated as full partners, and engage with them in a process of co-creation from the very start. Patients should be included also in developing actions related to (re) using their health data for research purposes, and in data governance.[5]
To ensure the Plan it addresses the needs and expectations of its end-users. This should include patient organisations’ formal representation on the Implementation Board.
Our organisations are in a key position to act as a bridge between patients and policy-makers, with significant expertise on how to involve grass-roots communities. Involvement of patient organisations should be built in at European and national level to ensure the Plan is fit-for-purpose and useful for European patients.

Conclusion

EPF welcomes the Cancer Plan, presented today by the European Commission, but at the same time, it strengthens its commitment to making it work for patients with cancer and/or other chronic diseases. For the Cancer Plan to succeed and live up to the high expectations that society and the patient community have placed on it, it should be co-implemented with its end-users to ensure that their views and needs are considered and met.

To fulfil the latter purpose, EPF remains at the full disposal of the EU institutions, its membership, and other interested stakeholders to co-implement the Cancer Plan, making sure that it addresses patient’s needs.

[1] Please see EPF (2017) “Patients’ perceptions of quality in healthcare”, https://www.eu-patient.eu/globalassets/policy/quality-of-care/quality-survey-report.pdf ; EPF (2016) Survey on Access to healthcare, https://www.eu-patient.eu/globalassets/policy/access/final-access-survey-report_16-dec.pdf

[2] https://www.youthcancereurope.org/2020/10/new-paper-cross-border-access-to-clinical-trials-in-the-eu/

[3] Please see EPF’s 2020 position paper on the value and pricing of innovative medicines, https://www.eu-patient.eu/globalassets/library/position-papers--briefings/position-paper---pricing---finalversion.pdf and our response to the EU Pharmaceutical strategy, https://www.eu-patient.eu/globalassets/policy/access/epf-pharma-strategy-final.pdf

[4] See WHO (2013) Health literacy. The solid facts. https://apps.who.int/iris/bitstream/handle/10665/128703/e96854.pdf

[5] See also EPF’s responses to the EU Data Strategy and statement on artificial intelligence: https://www.eu-patient.eu/news/latest-epf-news/2020/preparing-the-eu-for-digital-health/