How patients’ involvement brings quality to cancer care and policymaking

Considering patients’ voice is crucial when conducting cancer clinical trials, say medical experts and patient advocacy groups. [SHUTTERSTOCK]

This article is part of our special report How Europe can better tackle rising cancer incidence.

Medical experts and stakeholders from patient advocacy groups are keen to point out how crucial it is to consider patients’ voice as an added value when conducting cancer clinical trials, whatever policy on cancer, national or EU-wide, will eventually be put together.

The idea of a European Master Plan against Cancer was launched by the current European People’s Party (EPP) parliamentary group president, Manfred Weber, during his unsuccessful bid to become European Commission president.

On Wednesday (18 September), Weber himself relaunched his 10-point proposal from Strasbourg’s benches during a plenary debate, asking to set a special committee tasked with improving the EU coordination in the fight against cancer.

It should not surprise that Commission President-elect Ursula von der Leyen, also coming from the EPP, gave Health Commissioner-designate Stella Kyriakides the mandate to prepare a Europe’s Beating Cancer Plan, which is meant to be a support tool for member states to improve national cancer prevention and care systems.

The EU has been committed to finding a cure for cancer since the first “Europe against Cancer” programme launched in Milan in 1985, from the leaders of what used to be called the European Community.

Many things have changed since then and the new efforts should be focused more on bringing quality in cancer health care, considering new challenges of high survivorship, rehabilitation and continuity of care.

“It’s something that is not seen that much by policymakers, but for patients changes everything,” said Dr Tit Albreht, a senior researcher at the National Institute of Public Health of Slovenia.

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Excellence, not minimum standards

In addressing the challenge of bringing quality in cancer treatment, however, the patients’ voice has not yet been considered by policymakers, according to Ian Banks from the patient advocacy group European Men’s Health Forum.

“I find it staggering when we’re discussing the lives of patients without actually listening to what they want, and how they think it should be done,” he said.

As it is always difficult to have a one size fits all approach, he added that countries need both national inputs within national cancer plans, but also an overarching one which lays down the essential requirements for the different national cancer approaches.

These essential requirements for quality cancer care (ERCC) are currently under development by the European Cancer Organisation (ECCO), which is preparing a series of charters that advocate for improvements in patient care.

But to bring more quality and deliver excellence, Banks also pointed out that an overarching approach should set down guidelines rather than mere standards.

“We don’t want minimum standards, but quality cancer care that can be implemented and applied in any country,” he said.

For instance, some companies already started putting patients into the design of clinical trials, with the aim of overturning the rate of 50% of clinic trials collapsed due to lack of recruitment, meaning that not enough patients make themselves viable for the trial.

“If you include patient advocacy group in the design of the trial and all the way through it, the recruitment rate goes up and the crashed rate goes down,” commented Ian Banks.

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Well-being is the new focus

A survey of more than 16,000 participants, recently conducted in the Eastern countries, has tried to identify how patients could drive a positive change to cancer healthcare.

The survey highlights that, despite the introduction of screening programs for early detection, an average of more than 60% of participants were diagnosed with breast and colon cancer only after they first visited the doctor because they felt something was wrong.

But it also underlines that patients have faith in doctors or the healthcare personnel, although they don’t feel to get the rest of the support that they want.

Indeed, patients start seeing the healthy condition not only as the absence of disease but also as the presence of social well-being during, and particularly after, the care.

“I was surprised by how much patients know about treatments,” said Professor Slavica Sović from the University of Zagreb School of Medicine, who presented the outcomes of the study.

She added that healthcare professionals measure numbers like mortality or complications of a certain disease, but not the quality of social services or not directly related to healthcare.

“These are important for the wellbeing and the quality of life, and bringing quality in health care is the added value of patients’ involvement, as well-being which is particularly difficult to assess,” she said.

Ian banks said that “what patients want most from their treatments is normality. They want to be able to do the things that cancer took away from them.”

However, healthcare services tend to be focused more on longevity than on the quality of life. “But patients are not stupid, they don’t want to live forever. They just want normality,” concluded Banks.

How Europe can better tackle rising cancer incidence

Cancer, the second leading cause of death globally according to the World Health Organisation, is responsible for an estimated 9.6 million deaths in 2018.

In light of projections that the cancer incidents in Europe will double by 2035, a new survey …

[Edited by Zoran Radosavljevic]

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