For 3 out of 4 patients, sharing and using health data is essential for a more effective treatment path. It is the result of an investigation conducted in the context of progetto PATH, which sees Roche collaborate with 50 patient associations and federations. Patient associations ask that the Electronic Health Record and Pathology Registers be accessible in a uniform way in all Italian regions and that the patient experience be reported in addition to the health data.
«Along the entire treatment process, data relating to the patient can provide valuable information on treatment outcomes and health needs, including social and psychological ones, of the patients themselves» he explains Fidelia Cascini, Professor of Hygiene and Public Health at the Catholic University of the Sacred Heart. «Creating an effective and sustainable treatment path cannot ignore listening to the patient: in this way participatory and personalized healthcare can be achieved».
Patients are calling for the introduction of Patient Reported Outcomes
Patient associations also propose the introduction and adoption of PROs, Patient Reported Outcomesthat is, i questionnaires for the collection of treatment outcomes and experiences with the Health Service reported directly by the patient.
«These are tools that must be developed with the active involvement of patient associations, standardized and disseminated, also through associations, to patients and healthcare professionals» he explains Elisabetta Iannelli, General Secretary of FAVO-Federation of Volunteer Associations in Oncology. «An essential requirement for full use of all data collection tools is an expansion of patients’ decision-making capacity in terms of privacy, making them capable of choosing which data to share and with whom».
Successfully addressing these challenges will require a continuous commitment to promoting digital competence and establishing structured policies on data sharing and protection. Only through an integrated approach, which contemplates the active and proactive participation of patient associations as primary stakeholders in the Health System, will it be possible to use the potential of the evidence generated by patients
to improve the quality of care and the Health Service.
«The involvement of patient associations is fundamental for a paradigm shift: we need to transfer the patient’s voice to clinicians and researchers to transform it into scientific progress» he proposes Paola Zaratin, Director of Scientific Research AISM-FISM. «It is precisely the Associations that allow us to involve a “representative” and sufficiently large sample of patients. It is precisely this “representativeness” that allows us to transform data into results with scientific value for all actors in the Health System.”