Cancer Essentials: Inequalities in cancer care — a perspective from the European Cancer Organisation

The choice we must make: choosing against cancer inequality

Inequality is a choice.

So wrote the Nobel Prize-winning economist Joseph Stiglitz in his agenda-setting book The Great Divide: Unequal Societies and What We Can Do about Them opens in new tab/window. Stiglitz laid out how inequality is not inevitable; it is frequently the product of policy decisions we adopt. In that sense, some inequality is a choice we make (whether consciously or not) about the way we arrange, prioritize, and incentivize systems.

Inequality in cancer care is a global concern. The World Health Organization opens in new tab/window has been rightly encouraging greater international attention to the topic. A 2022 WHO report opens in new tab/window referenced that comprehensive cancer treatment is reportedly available in more than 90% of high-income countries but less than 15% of low-income countries, and that breast cancer survival five years after diagnosis now exceeds 80% in most high-income countries compared with 66% in India and just 40% in South Africa.

In this spirit, and with an eye to the European dimension of cancer inequalities, the European Cancer Organisation formed the Inequalities Network opens in new tab/window two years ago, bringing together healthcare professionals, patient representatives and other stakeholders from across public health, academia and other spheres.

From the outset, the Network highlighted problems and promoted solutions to inequalities across the cancer care continuum: prevention, detection, diagnosis, treatment, follow-up care, research, survivorship and quality of life. It highlighted inequalities between countries, including the “East-West Divide” in Europe, and within countries or regions based on race and ethnicity, sexual identity, gender, age or socioeconomic status and health literacy and patient education.

It can be done: beating inequalities in cancer care

An early focus of our Inequalities Network, which includes representatives from more than 40 organizations, was to help reach some consensus about inequalities. For this purpose, at the end of 2020, the Network held a public roundtable to hear from experts on the scale and nature of the problem in Europe and ways to address it. The result was the Network’s first Action Report: It Can Be Done — Beating Inequalities in Cancer Care opens in new tab/window. Recommendations included:

• Enshrining the 10 key rights of cancer patients set out in the European Code of Cancer Practice as a core tool and paradigm for delivering equitable cancer care.

• Ensuring wide access to reliable data to better identify national cancer control priorities and the accompanying development of cancer policies that truly reflect the local context.

• Fully implementing data-driven national cancer control plans (NCCP) in all countries.

• Treating each cancer patient as an individual and not as a simple representative of a demographic. Cancer care must take individual account of the patient’s health status, associated comorbidities and socioeconomic situation.

• Deploying standardized treatment pathways to ensure all cancer patients receive quality care.

• Recognizing a “right to be forgotten” to ensure the best possible quality of life for cancer survivors in respect to financial service provision.

What gets measured gets done: deploying data to combat inequality

Data-driven approaches to combatting inequality have been an essential component of our Inequalities Network. In the run-up to the publication of the European Commission’s game changing Beating Cancer Plan opens in new tab/window, our Network promoted the need for “a European Cancer Dashboard.” This is a tool to measure the effectiveness of the suite of new EU cancer policies and should be used to help target policy actions against disparities in cancer care.

When Europe’s Beating Cancer Plan was published last February, we were therefore delighted to see a component of the plan dedicated to combatting cancer inequalities across Europe, including a commitment to a Cancer Inequalities Registry. Plans for this Registry highlight a wide range of disparities in areas such as prevention, detection and treatment. At completion, the Registry will also segment its findings according to socioeconomic factors to give clear insights about disparities within countries. The three principal organizations engaged in building the registry are:

• The EU’s Joint Research Centre opens in new tab/window for gathering available data from cancer registries.

• The Organization for Economic Co-operation and Development (OECD) opens in new tab/window for country-by-country analysis.

• The International Agency for Research on Cancer (IARC) opens in new tab/window for new insights on social inequalities in cancer care across Europe.

Our network maintains regular dialogue with all three. We are grateful for their receptiveness to advice and proposals that come from our Network participants.

Cancer inequalities: a cause for international collaboration

Our Network has also benefitted greatly from the advice and experience from across the globe, including from the American Society of Clinical Oncology (ASCO) opens in new tab/window, which has made reducing inequalities in cancer care a central theme of its operations. Europe still has much to do to match the data collection and analysis available in the United States, where clear outcome differences have been highlighted based on race and ethnicity.

Last year’s European Cancer Summit opens in new tab/window featured an excellent summation of work being conducted in New Zealand to help improve the participation and engagement of Māori communities, with lessons about how we each can do more to help combat inequalities by thinking carefully about the ways in which we communicate and appreciating and responding to different cultural norms. We understand, too, that the European Cancer Organisation’s HPV Action Network opens in new tab/window has had similar exchanges regarding the engagement of First Nation communities in Canada with cancer care delivery. In the European context, we know there is much still be done to increase accessibility of, and engagement with, cancer care for the many groups in our societies who are too often excluded.  Such groups include the Roma communities of Europe, undocumented migrants, the homeless, and those within institutions such as care facilities or prisons.

Combating inequalities via health literacy

From the outset, one solution that our Inequalities Network has advocated is improved health literacy on modifiable cancer risks, the warning signs of cancer, and early detection strategies. Health literacy is a tool we can use to reduce social inequality in cancer incidence and late detection, and to ensure patients and their families demand, and receive, better care. Health literacy can reduce unwarranted fatalism. It can also help to inoculate against the pernicious impact of rampant disinformation. For this reason, we will publish this year a series of new consensus papers from our community outlining fresh opportunities for improving health literacy. We have been particularly pleased to work with the European Commission to provide detailed propositions of potential EU projects in this space. In summary, the Inequalities Network of the European Cancer Organisation is well animated by the energy and enthusiasm of its participants to achieve much. There is no fatalism within our network. Inequality is a choice, and we are finding new ways to identify it — and to fight it.