I had the chance to look around at the patients’ work and decide what can patients do to become more involved in their own therapy options, and I found out about this European project, EUPATI, which is an IMI-funded project. So I took part in the project and I underwent this training for a year in the whole R&D of medicine, and from that moment on then we received enough training to be able to make informed decisions in everything that concerns the decision-making process of pharmaceuticals.
It’s an education program. The aim of EUPATI is really to train patients to become really effective in the decision-making level. It’s a sort of patient empowerment, but more on the upper level. So it’s not about knowing about your disease and your therapeutic options, but really to be able to better advocate at the decisional level.
What are the types of things patients learn to do?
First of all we learn all the different aspects of a clinical trial, specifically where the patient input can be valuable in clinical trials, so to have a complete, broad picture on how a medicine is developed. But specifically where patients can give their contribution, starting from the clinical design of the trial, from the risk-benefit sort of balance, or even HTA.
Could you discuss the importance of patients communicating with other patients?
I think it’s really important for patients to create a sense of community because regardless of your disease, one of the good points of EUPATI was that it was not disease-specific, because I think the needs of the patient, the bigger needs, are the same for everybody. So it’s important for patients to connect and to work together and to inform each other, and one of the ways in which EUPATI’s very successful is that it operates as a network. We all represent different disease areas but we’re all connected, so we can share information, and we can support each other, and so every option that becomes available, we can sort of share it together and take part. It’s really important for patients to become a community.
How has this been implemented?
EUPATI now, we created basically Facebook, like a profile, and we’re all connected. It’s about a hundred of us have been trained by this project and now the third round is about to start so it’s continuing. We really share information and everything that’s got to do with training, so any opportunity we share it. We also tell each other, “Oh I’m going to take part in this conference, is anybody going, or is there any views you want to express?” So we work closely in that respect, we try to build a common opinion that we can put through institutions or stakeholders in general, because it is important to get the ideas from everybody. It’s not just your disease area.
On a personal level, what impact has patient empowerment had?
I hope it’s going to do much more, because especially in Italy we are lagging behind. I think what’s important is to understand – many people ask me, what is patient empowerment? To me, patient empowerment is that I am able to decide about my own life, about my own options. The decisions are not coming from above but I decide, I’m in the centre of this process. I think now I’m much more aware of what’s available for me, what I can do, and how I can contribute also to other patients. It has really made a big impact in my life.
Do you see a difference in doctors who are more willing for patient involvement?
Absolutely. I think this is a big obstacle and this is one of the next levels that we need to face. It’s a relationship with doctors and, as you said, on one side there are some doctors who are very open and collaborative, and they think patient input is important and so they’re open to this. On the other side there are doctors that are completely reluctant. They don’t want patients to be part of this process at all. It’s a cultural change, and like all cultural changes it takes time, it takes patience. But I think one important thing is for doctors to realise that if the patient is informed and can give something valuable back, then that’s a point where they start to realise, just the usual patient who just got information on the internet and is going to lecture him about things. You are an informed patient, you are there also to help him to understand patients better, so it has to be a collaborative approach.
How does a patient know where to find accurate information?
One of the main problems is exactly the source. Patients should look at, especially from the European level, everything coming from a validated perspective like the European content, for example. EUPATI developed a toolbox which is an IT instrument that you can log in and you can find information about the development of medicines. It’s completely free, it’s in all European languages, and the information there is checked and validated so you can be sure that’s reliable information. The EUPATI toolbox is one essential for patients. Then you have to always check where is information coming from? That’s important – try to recognise what are reliable sources and stick to them. Don’t just go out on the web and download anything that you find.
