The Evolution of PaLiNUro: A Decade of Patient Advocacy in Italian Bladder Cancer Care - Edoardo Fiorini
December 28, 2022
Edoardo Fiorini reflects on the decade-long journey of PaLiNUro, an Italian patient advocacy association for bladder cancer, inspired by the American BCAN and initiated by Andrea Necchi. A founding member of the World Bladder Cancer Patient Coalition, PaLiNUro fosters cooperation between doctors and patients, providing comfort, sharing information, promoting patient rights, and enhancing life quality. Recognizing the crucial role of emotional support during downtime post-treatment, the association aids in managing patient anxieties through various mediums like publications, newsletters, social media, and 24/7 support via email and phone. PaLiNUro's vision includes expanding their reach into hospitals nationwide, with an ambitious "Uro Hospital Angels" project, aiming to place a volunteer in every Italian hospital. Mr. Fiorini emphasizes the importance of partnership, planning to establish an Association Network involving other major cancer patient organizations, highlighting the intent to work side-by-side with doctors without impeding their professional domain.
Biographies:
Edoardo Fiorini, Founder, Associazione PaLiNUro (Pazienti Liberi dalle Neoplasie Uroteliali)
Biographies:
Edoardo Fiorini, Founder, Associazione PaLiNUro (Pazienti Liberi dalle Neoplasie Uroteliali)
Read the Full Video Transcript
Edoardo Fiorini: My name is Edoardo Fiorini and exactly 10 years ago, it was the 20 November 2012. I started my four cycles of chemotherapy, neoadjuvant chemotherapy before my radical cystectomy that I had in March 2013. Exactly, one year later PaLiNUro is born. We are inspired by the American BCAN, the most important patient advocacy association involved in the bladder cancer over the world. The main promoter in Italy was Andrea Necchi. Andrea Necchi is the name, PaLiNUro is an idea of Andrea. In 2019, PaLiNUro was one of the founding members of the World Bladder Cancer Patient Coalition. Since then PaLiNUro was born from medical, from doctors, the cooperation between doctor and patient was a primary items, important items from the beginning. It was really a late motive. Cooperation sometimes, seems to be a paper boat from sailing in a stormy sea because of the environment, where we live but also sometimes acts as a bridge in the communication between the patient and doctors. Communication is not always easy, even if a relationship between a doctor and patient is one of the few human interaction with the same target.
The patient health, the patient target are to heal, feel better in general, seize the best of the quality life. And for this reason, the patient fights the disease with all the strength. Also, the physician mission is to fight the disease, but in this struggle the patient's emotional side is sometimes disregarded. While, on one hand, some doctors are totally concentrated in their fight, on the other, patients risk of being considered only the container of their disease.
The disease may sometime react and fight back subtly or it may surrender and let itself be beaten. Of course there is no struggle with the ill person, but the relationship is based on a professional confidence and esteem and last but not least on a deep human complicity. But it is not always so easy, obviously and therefore owing to their fragility, the patient can believed by the doctor as a troublemaker, full of defects. It can seem rude, irritating, annoying, complaining and always claiming for certainties, also when no certainty can be given. The factor time is very important because the time is not enough or is often very short. And the supporting the doctor in the management of these aspects is one of the goals of an advocacy association.
Returning to the patient, the support of the hospital ward staff is essential but, it is limited to the hospitalization. After the patient has come back home. Downtimes is the most difficult moments. And any sudden pain or disorder can cause anxiety. What is happening to me? Is it normal?
PaLiNUro purposes to listen, to give comfort, to inform, to share and confront each other about common problems, to be a reference point, to defend the diseased rights, to help to improve the quality of life, to be the voice of the patient among who 'decides' and finally to promote the patient engagement. But the patient wants to know! He needs too clear and easy information and PaLiNUro wants to hand its own experience on.
We are the most convincing information, the living evidence that healing from this disease is possible as we wear our experience. In addition, we are the physical proof of the good job of the doctor. Obviously! Meeting a PaLiNUro volunteer is for patients an opportunity to solve their doubts whether they are at the beginning of the tunnel or they are already, as discharged from the hospitals. Our mission is don't make the patient feel alone but reminding him that he is not the only one.
This is very important. PaLiNUro wants to help the person to manage his anxieties and we do this with our publication, with our voice over IP. We have a good and reach of information, website. We have a monthly newsletter, we are very active on the social media and we act with on the phone, through email, where we are available 24-hour days, every day. Christmas included. We meet and support each other with self-help groups. We have four self-help groups in WhatsApp, in shared concentrate in each moment on the disease. Starting from not muscle invasive blood cancer to arrive, bladder urostomy and so on. We raise people's awareness of the important of early diagnosis. In the month of May we have launched a video and create absolutely from our experience. In this video, You can see a person that sees the sign that can save his life and if I'm afraid, obviously the name of this video is Stop at the Red.
Thank you, is our feeling. We have designed the best tool to find the right hospital close to home. Is something like TripAdvisor for hotel and restaurant, but it's called Euro hospital advisor. With the patient opinions on the uro department of the hospital where they have been treated. This is the most useful and complete database available online and on this project we have released a second movie. I show you in this movie that we have launched in the May awareness campaign, we are involved in the fabulous wife anxiety and worries.
Last week, we engage the patient in our fifth national meeting where patient met the doctors. It's a very important moment for us and this has been another occasion to reiterate the concept of Stop at the red.
Furthermore, we are reaching the right size to raise funds for independent research. Maybe this was one of the objective of Andrea, when invented this association map. We been obliged to wait some years but now we are practically ready to do this. An important thing is that a patient association is useful, only if the involved party are aware of each other existence. Only through a larger knowledge we will reach our first target. Our first target is to grow. This year in 2022 we reach 250 subscribers and for us an excellent result. Really!
We are looking for new potential associates, obviously, through internet, but also in the places where they go to be treated: in the hospital. So, at the moment PaLiNUro's dream is to have a volunteer in each Italian hospital. In 2019, we launched this project, Uro Hospital Angels and despite the Covid, in two years, we are in 15 hospitals all over Italy. We are accredited. We are working in progress with other 10 hospital, that we realize that we will reach during the next year. But obviously, putting a flag is not enough. We want to develop guidelines to integrate PaLiNUro volunteers into the department hospitals. We have to share with the doctor, what to say to the patients in an ambiguous way. Otherwise, we can risk to the disorientation of the patient, obviously. Another point, since this evening there are here two colleagues of other important association. Unity is strength.
We would like to create an Association Networking in the hospitals. In our projects, is innovative because our dream is realizing a project exactly here in this hospital, the San Raffaele Hospital involving together with PaLiNUro. ANTURE is involved in kidney cancer, Europa Vomo is involved in prostate cancer. I hope to realize, our wish obviously is to stay side by side with the doctor and learn how to work together without invading their area of competence. Because from now there is one promise from my side, we will be a discreet help and not an obstacle, obviously. Thank you.
Edoardo Fiorini: My name is Edoardo Fiorini and exactly 10 years ago, it was the 20 November 2012. I started my four cycles of chemotherapy, neoadjuvant chemotherapy before my radical cystectomy that I had in March 2013. Exactly, one year later PaLiNUro is born. We are inspired by the American BCAN, the most important patient advocacy association involved in the bladder cancer over the world. The main promoter in Italy was Andrea Necchi. Andrea Necchi is the name, PaLiNUro is an idea of Andrea. In 2019, PaLiNUro was one of the founding members of the World Bladder Cancer Patient Coalition. Since then PaLiNUro was born from medical, from doctors, the cooperation between doctor and patient was a primary items, important items from the beginning. It was really a late motive. Cooperation sometimes, seems to be a paper boat from sailing in a stormy sea because of the environment, where we live but also sometimes acts as a bridge in the communication between the patient and doctors. Communication is not always easy, even if a relationship between a doctor and patient is one of the few human interaction with the same target.
The patient health, the patient target are to heal, feel better in general, seize the best of the quality life. And for this reason, the patient fights the disease with all the strength. Also, the physician mission is to fight the disease, but in this struggle the patient's emotional side is sometimes disregarded. While, on one hand, some doctors are totally concentrated in their fight, on the other, patients risk of being considered only the container of their disease.
The disease may sometime react and fight back subtly or it may surrender and let itself be beaten. Of course there is no struggle with the ill person, but the relationship is based on a professional confidence and esteem and last but not least on a deep human complicity. But it is not always so easy, obviously and therefore owing to their fragility, the patient can believed by the doctor as a troublemaker, full of defects. It can seem rude, irritating, annoying, complaining and always claiming for certainties, also when no certainty can be given. The factor time is very important because the time is not enough or is often very short. And the supporting the doctor in the management of these aspects is one of the goals of an advocacy association.
Returning to the patient, the support of the hospital ward staff is essential but, it is limited to the hospitalization. After the patient has come back home. Downtimes is the most difficult moments. And any sudden pain or disorder can cause anxiety. What is happening to me? Is it normal?
PaLiNUro purposes to listen, to give comfort, to inform, to share and confront each other about common problems, to be a reference point, to defend the diseased rights, to help to improve the quality of life, to be the voice of the patient among who 'decides' and finally to promote the patient engagement. But the patient wants to know! He needs too clear and easy information and PaLiNUro wants to hand its own experience on.
We are the most convincing information, the living evidence that healing from this disease is possible as we wear our experience. In addition, we are the physical proof of the good job of the doctor. Obviously! Meeting a PaLiNUro volunteer is for patients an opportunity to solve their doubts whether they are at the beginning of the tunnel or they are already, as discharged from the hospitals. Our mission is don't make the patient feel alone but reminding him that he is not the only one.
This is very important. PaLiNUro wants to help the person to manage his anxieties and we do this with our publication, with our voice over IP. We have a good and reach of information, website. We have a monthly newsletter, we are very active on the social media and we act with on the phone, through email, where we are available 24-hour days, every day. Christmas included. We meet and support each other with self-help groups. We have four self-help groups in WhatsApp, in shared concentrate in each moment on the disease. Starting from not muscle invasive blood cancer to arrive, bladder urostomy and so on. We raise people's awareness of the important of early diagnosis. In the month of May we have launched a video and create absolutely from our experience. In this video, You can see a person that sees the sign that can save his life and if I'm afraid, obviously the name of this video is Stop at the Red.
Thank you, is our feeling. We have designed the best tool to find the right hospital close to home. Is something like TripAdvisor for hotel and restaurant, but it's called Euro hospital advisor. With the patient opinions on the uro department of the hospital where they have been treated. This is the most useful and complete database available online and on this project we have released a second movie. I show you in this movie that we have launched in the May awareness campaign, we are involved in the fabulous wife anxiety and worries.
Last week, we engage the patient in our fifth national meeting where patient met the doctors. It's a very important moment for us and this has been another occasion to reiterate the concept of Stop at the red.
Furthermore, we are reaching the right size to raise funds for independent research. Maybe this was one of the objective of Andrea, when invented this association map. We been obliged to wait some years but now we are practically ready to do this. An important thing is that a patient association is useful, only if the involved party are aware of each other existence. Only through a larger knowledge we will reach our first target. Our first target is to grow. This year in 2022 we reach 250 subscribers and for us an excellent result. Really!
We are looking for new potential associates, obviously, through internet, but also in the places where they go to be treated: in the hospital. So, at the moment PaLiNUro's dream is to have a volunteer in each Italian hospital. In 2019, we launched this project, Uro Hospital Angels and despite the Covid, in two years, we are in 15 hospitals all over Italy. We are accredited. We are working in progress with other 10 hospital, that we realize that we will reach during the next year. But obviously, putting a flag is not enough. We want to develop guidelines to integrate PaLiNUro volunteers into the department hospitals. We have to share with the doctor, what to say to the patients in an ambiguous way. Otherwise, we can risk to the disorientation of the patient, obviously. Another point, since this evening there are here two colleagues of other important association. Unity is strength.
We would like to create an Association Networking in the hospitals. In our projects, is innovative because our dream is realizing a project exactly here in this hospital, the San Raffaele Hospital involving together with PaLiNUro. ANTURE is involved in kidney cancer, Europa Vomo is involved in prostate cancer. I hope to realize, our wish obviously is to stay side by side with the doctor and learn how to work together without invading their area of competence. Because from now there is one promise from my side, we will be a discreet help and not an obstacle, obviously. Thank you.