GOP

0

Speech by Paolo Federici at the “Aortic Disease Awareness Day” of San Raffaele 19 September 2019.

At a European level, for some years now, 24 ERNs (European Reference Networks) have been set up, study groups within which all rare diseases are incorporated. Each ERN has joined one or more research centers and hospitals specializing in one or more rare diseases.

  • Then for each ERN an EPAG (European Patient Advocay Group) was activated, in short, we too have the people’s advocate … for the sick!At this point, we have taken stock of Italy: Italians are actively present and involved in 17 of the 24 EPAGs.
  • During the last meeting of Eurordis (which is the European federation of rare patient associations) the establishment of the EPAG ITALIA group was made official. Among other things, we are the first to have developed a national EPAG!

Specific objectives

Colon Cancer Screening: Is It Time for You to Start?ENHANCE the ITALIAN EPAG NETWORK: create a transversal container for the exchange of good practices of ePAG activity in ERNs and initiate or intercept training activities so that the expertise of our delegates can grow more and more.

REPRESENTATIVITY: making the fruit of our experience easily usable for national authorities with the presentation of proposals, requests and feedback through our representative bodies in order to facilitate the integration of ERNs in our national health system and be co-authors of functional improvements to the needs of the rare disease patient community.

COMMUNICATION: be promoters of knowledge of ERNs and the role of ePAGs in the medical community and not only through shared strategies and with the help of standardized materials that allow us to standardize the contents and form of our communication where possible

SUSTAINABILITY: Lobby to search for livelihoods and enhance the activities of Italian ePAGs.Ensure that care is centered on the patient and respects the rights and choice of patients.

Ensure transparency in terms of quality of care, safety standards, clinical results and treatment options.Ensure that ethical issues for patients are addressed by balancing clinical and patient needs.Contribute to the development of information, care pathways and guidelines for patients.

Provide advice on the planning, monitoring and evaluation of ERN initiatives.

What patients expect:Not to be subjected to a few tests.But not even to be subjected to too many tests.Avoid double examinations (when “changing” hospital).Avoid prophylaxis already tried and proved inefficient.Avoid the pain.Do only what is really necessary.

Total Cancer Care® Program | OSUCCC – JamesPaolo FedericiThe App that makes your life easier!Improve the patient experience by offering your service at your fingertips: you will improve the patient experience, simplifying the processes and the overall workload of your collaborators.Download the demo APP Find out morePatient management app for medical centers, hospitals, clinicsHealth, at your fingertips.

Today, patients are increasingly connected and expect your health services to be available on their Smartphone.

With the Tuotempo App, it’s now easier than ever.icon-1Promote the loyalty of your patientsProvide your regular patients with easy and convenient access to your services when they need it.icon-2Promote word of mouthThe App represents an indispensable tool for the patient, who will be encouraged to talk about it with friends and relatives.icon-3Oops!

Have you forgotten it again?Use reminders to help your patients remember their appointments.icon-4Grow your healthcare facilitySimplify processes, build customer loyalty and reach new ones:

App is an essential ingredient in your digital ecosystem.icon-5Cut unnecessary costsSave time and reduce costs with patient self-service.icon-6Fill in the free slots in your diariesNotify patients on your waiting lists of the possibility of last-minute filling of empty seats in the diaries of your medical specialists.

LEAVE A REPLY

Please enter your comment!
Please enter your name here