The commitment of Cittadinanzattiva-Active Citizenship Network in the oncology field at National and EU level

Cittadinanzattiva has a more than 40 year experience in the protection of citizens' rights in the health sector, which initiated with its Tribunale per i diritti del malato ("Tribunal for Patients' Rights" or TDM) in 1980 and was later strengthened through the Coordinamento nazionale Associazioni Malati Cronici (National Coordination Centre of Chronic Patients' Associations) in 1996.

Over the last 20 years, it has been increasing its advocacy activity for the promotion and protection of citizens' rights through the following strategic actions:

  • Protection against violations of the right of individual citizens, through its free-of-charge counselling, information and support service provided by 300 TDM offices located nationwide
  • Collection and dissemination of best practices
  • Institutional dialogue and promotion of civic recommendations to foster cultural and legislative changes aimed at strengthening the protection of rights
  • Production of citizens’ information, awareness raising campaigns and dedicated projects

 

Our commitment at national level

Over the years, Cittadinanzattiva has developed and invested in the technology of citizen protection creating the “PIT” (integrated project of citizen protection). PIT provides - daily and free - guidance, information and citizen protection for those citizens who have experienced inadequate services in the health service, other public services and in the area of justice. One element that characterizes PIT and sets it apart from a simple citizen protection help desk is its modality of involving the citizens themselves to actively participate in their own citizen protection. The reports received each year by the PIT are analyzed in a national report that picture the healthcare service through the eyes of citizens and patients and defines the priorities that will address the civic agenda.

For example, the 2016 report showed that the oncology area appears to be among those in which the Tribunal for patients’ rights of Cittadinanzattiva collected the highest number of reports, mainly concerned access to therapies.

 

Problems faced by cancer patients

 

Waiting lists:

 

Long waiting lists for cancer surgery

13,1%

Long waiting lists for specialist visits

10,3%

Long waiting lists for diagnostic tests

17,6

SUSPECT OF MALPRACTICE:

 

Suspected therapeutic error

9,1%

HOSPITAL ASSISTANCE:

 

Refusal of hospitalization

20,6%

Healthcare mobility

39,4%

ACCESS TO DRUGS:

 

Difficulties in accessing medicines

9,8%

 

Source: Reworking by the Civic Observatory on Federalism in Healthcare, 2016, Cittadinanzattiva based on PiT Health Report data, Cittadinanzattiva, 2016

Also the 2018 report allowed us to extrapolate other data on the most relevant issues for cancer patients and, also in this case, the first problem encountered concerned access to services due to long waiting lists for performing diagnostic tests, medical examinationand surgery.

Long waiting lists for oncological interventions

13.2%,

Long waiting lists for specialist visits

9.9%

Long waiting lists for diagnostic tests

16.8%

Long times for chemotherapy and radiotherapy

10%

 

Moreover, according to the 2018 report, 10.7% of the people who reported difficulties in accessing medicines represent patients with an oncological diagnosis.

Indeed, most of the analyzed hospitals (42%) replied that on average the insertion of new drugs into the hospital pharmaceutical handbook takes place almost immediately (0-15 days). However, in most of cases it takes several months: 3 to 4 months (7%) and 4 to 6 months (9%).

These data clearly show that cancer patients still have to face many violations of their fundamental rights.

Please find below just a few examples of our long-lasting commitment on the topic translated into English.

To know more about all the Cittadinanzattiva’s commitment on cancer care at national level, please visit: https://bit.ly/2HiMGqa (IT)

 

2016 - Civic monitoring of oncological facilities
Cittadinanzattiva’s Tribunal for Patients’ Rights carried out a civic monitoring in order to compare strengths and areas of oncological facilities that require improvement. A useful guide to help the citizen learn about the services and choose where to take care of himself.
To know more visit: https://bit.ly/34mNQJt

2019 - Civic monitoring of onco-hematological Day Hospitals
Patients positively judged the serviceprovided by onco-hematological Day Hospitals. On the other hand, critical waiting times for the admission- up to 8 hours - and poor planningemerged by the civic monitoring. Investments in organization and computerization are necessary. Positive the times related to the start of chemotherapy, delivered to all patients within 30 days.Attention to patients’ needs: partially rejected.
These are some of the collected data during the evaluation. To know more visit: https://bit.ly/3gX7dxS

2020 - Manifesto for the right to personalized medicine
At national level, over the years, Cittadinanzattiva carried out many activities and projects in the oncology field. For instance, along the 2020, one of the last initiatives has been the launch of the Manifesto for the right to personalized medicine (EN version), drawn up thanks to the joint work with scientific societies, doctors, and patient associations (this is the link to the Italian version).
The Manifesto indicates 11 patients' rights: the right to personalized treatment; diagnostic and therapeutic innovation; equity of care; quality of life; information and guidance; timeliness of care; access to appropriate care; participation and choice of care; training; privacy and respect for psychological aspects; humanization.
It proposes to put in place concrete actions as: favor the full involvement of the patient in the treatment process, from diagnosis to follow-up, in order to improve health outcomes; favor the psychophysical well-being not only of the patient but also of those who assist him/her; include new diagnostic tests on molecular alterations (NGS) in the Essential Levels of Assistance (Lea) and define uniform tariffs for refund to the Regions; clearly define, through specific guidelines, the criteria of access for patients to the use of gene sequencing methods (NGS) and start an evaluation of the structures eligible for the use of NGS technology and targeted therapies, favoring organizational modalities also between regions to guarantee the same treatment opportunities to every citizen; promoting the establishment of groups of experts in different disciplines (Molecular Tumor Board) on the territory according to precise and shared standards and in close connection with each other, through a network of collaboration and a continuous exchange of information; promote and ensure the training of specialized personnel.

2020 - Advocacy activity for cancer & COVID-19 patients
Together with representatives of medical-scientific communities such as Periplo - which represents the Italian cancer networks - and the Foundation for personalized medicine, Cittadinanzattiva has sent to the National and Regional Health Italian Authorities, a request in order to adopt new measures to guarantee the continuity of treatment for cancer patients outside hospitals, in a safer context, able also to decongest the hospitals. Here you can find the official request and an article (both in IT language).

Federfarma and Cittadinanzattiva proposed to distribute antivirals and antimalarials for coronavirus sufferers also in pharmacies, highlighting how the distribution of these medicines through pharmacies will not only reduce displacements, but will also allow the pharmacist to monitor patient adherence to therapy and to acquire useful information on the correct use of the medicine on compliance with the therapeutic plan. Read more (IT)

Cittadinanzattiva also took part in the course on “BioMedical studies in the Age of Pandemics: the COVID-19 impact” organized by the “Ettore Majorana Center International School of Molecular Oncology”.

 

Our commitment at European level

2015 - Ongoing - Palliative care and the fight against useless cancer pain
Among the initiatives carried out both at national and European level, one of the most important concerns the fight against useless pain cancer and non-cancer related: the “European Civic Prize on Chronic Pain - Collecting Good Practices” that ran for three editions. Please find here the links to the first and the second edition, the third one is still ongoing. This project is part of a wider commitment of Cittadinanzattiva-Active Citizenship Network to the Fight against Useless Pain.

2016 - Ongoing - The promotion and protection of citizens' right in cross-border healthcare
Over the years, Active Citizenship Network has been increasing its commitment to the promotion and protection of citizens' right in cross border healthcare through many activities.

Indeed, patients – as should be their right - want to access cross-border health services when treatment is not available in their home country, when it is managed better elsewhere, or, as in the case of many border areas, when the nearest available care is in another Member State. This is the case especially of highly specialized medicine, rare diseases and oncology care.

Between 2016 and 2017 ACN carried out – in 24 Member States - the communication campaign “Patients' rights have no borders”dedicated to this topic. After two years of activities across Europe, as discussed during a conference hosted by theMEPs Interest Group “European Patients' Rights & Cross-Border Healthcare”, Active Citizenship Network would plan a widespread activity focused European Reference Networks (ERNs) that, when fully developed, present an opportunity for building capacity throughout Europe in the provision of specialised health services so as to ensure quality of care, and dissemination of knowledge and innovative practices.
To know more about our commitment on cross-border healthcare, please click here.

2020 - Public consultation on Europe's Beating Cancer Plan
Active Citizenship Network responded to the EU-wide public consultation on Europe's Beating Cancer Plan launched by the European Commission in February 2020. The outcomes of the consultation will help shape the Plan, identify key areas, and explore future action. Indeed, the consultation was addressed to individual citizens, patients, and carers replying in their personal capacity as well as health professionals and organisations involved in cancer prevention, diagnosis, treatment, follow-up care and research.The European Commission invited these key stakeholders to share their views and experiences to feed into a European cancer plan putting European citizens at the centre.
To know more and read all the contributions to the consultation, please visit: https://bit.ly/2LOfRDD

2020 – Articles published in peer-review journals
In 2020 some publications in peer-reviewed journals were made, as the one on Europe’s beating cancer plan & citizens’ engagement - The case history of the civic monitoring of onco-hematological Day Hospitals across Italy on Trends in Medicine. Indeed, in Italy the oncology area appears to be among those in which Cittadinanzattiva collects each year the highest number of reports and requests of support. The majority of the reports concerned access to therapies and in particular: dysfunctional health services with high disparities in quality from region to region, the difficulty in accessing drug therapies in a timely manner, discontinuity of care between hospital and territory, inter-regional mobility, the lack of humanization of care. The hope is that the new Cancer Plan could respond to the main gaps found by citizens, reducing health inequities and disparities that are unacceptable between States, and between Regions within the same Country: In Italy, for instance, the concrete access of innovative oncological medicines varies from 0-15 days to 61 days. EU should ensure a more rapid access to innovative medicines, strengthen the knowledge of patient organizations and ensure timely access to therapies for severe diseases with unmet medical needs.

Please find here also an article on The Relevance of the “Charter of Rights against Unnecessary Pain” in the Framework of the Europe’s Beating Cancer Plan published on the Mathews Journal of Nursing and Health Care.

2020 - Active Citizenship Network joins All.Can
ACN is pleased to join forces with All.Can, an international multi-stakeholder not-for-profit organization, working to improve the efficiency of cancer care by focusing on what matters to patients.
As well as Active Citizenship Network, All.Can works believing that keeping patients at the center of each healthcare process, with a bottom-up approach, is the key to a more sustainable and efficient healthcare system.

Last update: December 2020

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