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Patients also want to be protagonists in drug approval

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Patients also want to be protagonists in drug approval

The PRO4All Group relaunches its appeal to the institutions: with i Pro-Patient Reported Outcomes, i.e. the tools to collect the voice of patients, it is possible to improve treatment paths and support the sustainability of the Health System. It is amply proven that to improve the National Health Service it is necessary to put patients’ needs and rights at the center of health policy decisions. To do this, the PRO4All Group has been working for more than two years to promote the need to collect patient data based directly on their experience of the treatment.

Patients want to be more and more protagonists

In a meeting in the Senate, the Group presented the manifesto “Patients PROtagonists for everyone’s health“: the first commitment of the document, proposed to the attention of the institutions and political decision-makers, concerns the updating of the AIFA guidelines – Italian Medicines Agency, regarding the compilation of the price and reimbursement dossier for medicines. It follows, as a second commitment, the need to provide for the presence and active participation of representatives of patient associations in the governance of AIFA.


The third commitment calls for raising awareness in the world of clinical research, the scientific community, national and territorial ethics committees and institutions on the importance of giving maximum dissemination to the outcomes reported by patients through Patient-Reported Outcomes Measures (PROMs), i.e. documents that measure patients’ conditions beyond clinical data, such as physical and cognitive condition, social discomfort, mental well-being
and emotional.

«PROMs are widely used in the USA and partly also by the European Medicines Agency and it is thanks to the proven value that these tools have for the system that numerous European countries are already adopting innovative strategies to ensure that the patients’ voice is centralized in decision-making processes and health policies” he explains Francesco De LorenzoPRO4All Member and President of FAVO-Federation of Volunteer Associations in Oncology.

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«In Italy there are still no guidelines or structured mechanisms for the use and evaluation of these values, thanks to which it would be possible to detect the intangible aspects of the pathology and treatments, contributing to greater efficiency in the evaluation of drugs» he adds Adele D’AmicoPRO4All Member and Board Member of AIM – Italian Myology Association.

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