The search engine with geolocation Uro-H-Advisor, designed by patients with urothelial tumors to guide those with bladder cancer to choose the hospital where to treat themi, is presented on May 25 during an online event of the PaLiNUro Association (Patients free from urothelial neoplasms). “For a long time our goal was to get to have a sort of ‘TripAdvisor’ of hospitals for the treatment of bladder cancer and now, that the platform is a reality, the goal is to populate it with all the experiences, evaluations and unquestionable judgments of the patients themselves “, declares Edoardo Fiorini, president of PaLiNUro.
I’m 30 thousand diagnoses of urothelial neoplasia every year, a disease which, by incidence, is fifth (fourth in men) in Italy. The Uro-H-Advisor portal, created as replicable and free source, currently collects over 160 qualified reviews, but has the goal, in the next 2 years, of being known and made accessible to at least 20 patient associations so that they can use it for the same purpose, adapting it to their specificities in a perspective of cooperation and exchange of shared actions that give voice to the needs of patients.
The platform aims to support patients
in choosing the “best hospital near home”, making use of the experience of those who have known and experienced the facilities in the area personally and are able to provide accessible, reliable, verified, experiential and concrete information based on three parameters of judgment: competence, effectiveness and humanity. The Uro-H-Advisor system – reads in a note from the association – allows the search for one or more evaluations of the urology department of the hospital where the pathology is treated and the search for the hospital that can treat better and, possibly, closer to home, also in order to avoid the so-called ‘health pilgrimages’.
The search engine was realized thanks to the contribution obtained with the victory in 2020, and then again in 2021, of the Roche Foundation call for patients, which finances only 10 projects each year aimed at improving people’s quality of life. In 2021 Palinuro developed the platform which he subsequently populated with content and comments, with the intention of promoting it from now on to make it usable by clinicians and the general public.
The evaluations and reviews – continues the note – will be integrated and mediated with those of other people who have been treated in the same hospital, also allowing the comparison with the average of the evaluations of all the hospitals reviewed throughout the national territory. All the data used for the database relating to the hospitalization facilities were found by the Ministry of Health. For each of them, moreover, it comes indicated the number of major surgeries performed on the basis of what is indicated by the National Outcomes Program (latest edition available). For each facility, where available, the reference specialists are highlighted, and characteristics such as the availability of certain therapies, the types of surgical interventions available and the techniques used, the availability of certain types of tests, particular diagnostic techniques and of rehabilitation services.
“Compared to other portals currently available to patients, which include all pathologies, resulting therefore generic and therefore incomplete, not updated and even less exhaustive – continues the note – the Uro-H-Adviso project has a higher level of specialization and concentration on specific cases. The PaLiNUro Association also verifies and possibly moderates information that is inaccurate or dictated by particular emotional states of the person providing the information. Clinicians and their structures are invited to report any inaccuracies or omissions to the association “.
Participating in the presentation event of the Uro-H-Advisor project: Edoardo Fiorini, president of the PaLiNUro association; Daniela Girardo, delegate of the Piedmont Region of the PaLiNUro association; Patrizia Giannatempo, oncologist, Irccs Foundation National Cancer Institute Milan; Roberto Salvioni, former director of the complex structure of urology surgery, Irccs Foundation National Cancer Institute Milan. In connection there are: Eugenio Brunocilla, urologist, Policlinico Sant’Orsola Malpighi Bologna, and Senator Maria Pia Garavaglia, president of the Roche Foundation. The live broadcast, Wednesday 25 May at 5 pm, can be followed on Youtube (www.youtube.com/channel/UC3yAcEMfCcUCiSBkjLRqEBA) and Facebook (www.facebook.com/AssPalinuro).