Never more than during this period of health crisis has it been so necessary to involve patients actively in their course of treatment. The situation which is linked to the spread of the COVID-19 infection and the recent provisions which impose limits on inflow in specialized outpatients’ departments is affecting patient management: it is for this reason that the more the individual is “engaged” the more they feel responsible for dealing with their own condition and therapy.
Conscious of the fact that the new frontier in healthcare innovation is Patient Engagement – intended as the process which promotes the patient’s central role and participation – Kedrion Biopharma will offer an unrestricted grant in support of the "Words in Hemophilia: Towards Patient Engagement" project which will be developed by the "EngageMinds HUB" Research Center of the Catholic University of the Sacred Heart of Milan.
This research and training course is based on the assumption that active patient involvement guarantees increased adherence to treatment, which means fewer complications associated with the disease, greater safety and effectiveness of treatments and, as a result, an overall improvement in the quality of life of patients.
This project will be conducted under the scientific supervision of Prof. Guendalina Graffigna, director of "EngageMinds HUB," the first Italian multidisciplinary research center aimed at promoting and carrying out scientific activities – inspired by the principles of consumer psychology – and related to the topic of engagement in health behavior.
"This project is unique at an international level because it aims to give voice to the experience of illness and the treatment of patients with hemophilia; to understand what encourages and motivates patients to adhere to therapy, as well as to support their active engagement in the treatment process," Prof. Graffigna explains.
"The results of our research will not only contribute to the improvement of the engagement experience for patients, but will also raise awareness among clinicians about how their patients experience disease, and will offer practical ideas and tools to improve doctor-patient communication strategies," says Dr. Serena Barello, project leader and researcher at the "EngageMinds HUB."
"Active involvement on the part of patients,” says Dr. Manuela Scarpellini, Medical Affairs Director Italy, EMEA, Russia &CIS of Kedrion – "is essential in achieving therapeutic goals. It is for this reason that Kedrion is proud to support the EngageMinds Hub in this innovative project. It will enable the Catholic University of the Sacred Heart in Milan to use scientific tools in order to gather and analyze the experiences and perceptions of patients and doctors in order to promote mutual dialog."
"This project offers the opportunity, through narration, to research the most significant aspects and potential problems which lie within the special, deep personal relationships that hemophilia patients establish with their hematologists. From this starting point, we can promote better interaction between everyone so that doctor-patient alliance, which is so important in the treatment of hemophilia, becomes as solid and effective as possible," says Cristina Cassone, President of FedEmo – Federation of Hemophilia Societies.
In fact, as Andrea Buzzi (President of the Paracelsus Foundation) recalls, "Patients are the most overlooked resource of the healthcare system, but their active engagement improves the outcome of treatment and the functioning of the healthcare system."
"This project is of the utmost importance, because it aims to give voice to the experiences of hematologists involved in the treatment of hemophilia patients. This is a fundamental path towards integration in order to ensure the humanization of treatment." says Dr. Biasoli, member of the AICE Board of Directors and Head of the Clinical Hemophilia Center of the M. Bufalini Hospital in Cesena.