Greece finally gets a National Cancer Registry, enhancing disease pathway monitoring [Advocacy Lab Content]

After years of delays, the Greek health ministry has enacted a National Registry for Patients with Neoplastic Diseases. The country was one of the last in the EU to develop a Cancer Registry; patients and doctors have spoken about a historic moment for Greece.

The registry will, for the first time, accurately record specific, adequately defined, real cancer data for Greece. It will also allow the monitoring of the disease pathway, from prevention, screening and early diagnosis to treatment, care, and survivorship, helping to improve the patient journey within Greece and the EU.

“With the signing of the Ministerial Decision, the next chapter for oncology care begins in Greece, for patients, health care professionals and for the society as a whole,” Zenia Saridaki-Zoras, President of the Hellenic Society of Medical Oncology (HeSMO) told Euractiv.

“It was a long-awaited decision, extremely important for our country,” said George Kapetanakis, President of the Hellenic Cancer Federation (ELLOK). He confirmed to Euractiv that “Greece has been one of the last EU member states to establish a National Registry for cancer patients.”

Both the Hellenic Society of Medical Oncology and the Hellenic Cancer Federation have participated in the working group discussions for the development of the Ministerial Decision, which establishes the national registry for patients with neoplastic diseases.

The implementation of the Registry comes at a time when the EU is trying to coordinate efforts in the fight against cancer through Europe’s Beating Cancer Plan.

Real-time data and broader public health benefits

With a national registry, the country can form its cancer policy based on real-time and valid data for the first time, remarked Kapetanakis: “It will contribute to properly managing the cancer prevalence across the country, along with streamlining the cost for cancer treatments.”

For Saridaki-Zoras, president of HeSMO, the national registry should gradually have a mandatory application, with the possibility of moving retrospectively as well. It is at the same time, “part of the broader digitisation task of health care in Greece,” she added.

Saridaki-Zoras explained that the registry could be linked with IDIKA (e-Government Centre for Social Security that operates, among others, the e-prescription system). It could then be interconnected with specific treatment protocols, such as those HeSMO updates annually, and with the electronic oncology patient file when it is formed.

“It will also give the possibility of using anonymised data for the benefit of research and public health,” she explained.

Additional staff is needed

Despite being a breakthrough for cancer management nationally, the said registry would demand a variety of specific requirements from the doctors. The question here is how it could be achieved in a proper way and without taking away time from patient care.

“There are several technical issues that are left to be seen relating to the procedures – because the job will have to be done exclusively by the doctors,” Kapetanakis told Euractiv.

Saridaki stressed that “completing, maintaining and finally realising a National Cancer Register, is a medical job, perhaps one of the most important.”

Therefore, the state will need to support the registry’s implementation, enabling a further digitalisation of the health sector. The reality of understaffing in terms of medical and other human resources may undermine the effort if it is not timely and properly corrected.

“The state should ensure that the implementation is shielded, with human, medical, secretarial, secretarial support, assistants, trained recorders, and inanimate material, such as the necessary technological equipment,” Saridaki added.

Kapetanakis remarked: “A trained secretarial support is also essential- which is now lacking [in the current ministerial decision]- to facilitate doctor’s work relating to the bureaucratic process – a burden that takes hours away from patients.”

In addition, training of the existing personnel is also crucial for the proper function of the new registry platform.

“We propose the first platform pilot to be promptly, in four to six months, implemented in specific centres so that we can see what is needed, correct failures, get trained and be ready for its universal implementation,” said Zenia Saridaki-Zora.

[By Marianthi Pelekanaki, Edited by Vasiliki Angouridi, Brian Maguire | Euractiv’s Advocacy lab]

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