From patient to advisor for researchers in clinical trials

Dani had never had any serious health problems until, at the age of 13, he was diagnosed with leukaemia. "At that time I was doing a lot of mountain biking and I began to notice that I was gasping for breath on the climbs. Also at night, when I went to bed, I found it hard to breathe," he recalls. It was these breathing difficulties that led him to consult the paediatrician.

Initially, the doctors treating him thought he had asthma, but the symptoms did not improve with treatment and they decided to take an X-ray. "Then they saw something strange and told us to come to SJD Barcelona Children's Barcelona. They already suspected it could be cancer," he explains. The next day, the doctors at the Hospital confirmed their suspicions and diagnosed him with leukaemia.

"When the doctors told me I had a blood disease and would have to spend a long time in hospital, what worried me most was not being able to be at home or go to school, stopping seeing my friends, not being able to go out on my bike... I didn't understand the severity of the illness, I only saw the impact it was having on my life," he explains.

Passion for Medicine

The young man spent much of the next two years in treatment: "During the most intensive period, which lasted about nine months, I had to come in almost every day and the Hospital became a second home to me." It was at that time that he first considered going into medicine. "I was a very curious patient. I always asked loads of questions about the illness, the symptoms, the chemo... I remember one day I spent two hours talking to one of the doctors treating me, Montse Mesegué," he recalls.

And that's how the boy who had been undecided between engineering and audiovisuals ended up choosing medicine. "I think what moved me was the personal experience I had lived through. I thought I could bring something unique: my experience as a patient. Having overcome leukaemia allowed me to have more empathy, and I believed this could help other families and young people who might have to go through the same situation. I wanted to offer the human support that I valued so much during my treatment," he argues.

Eight years after his leukaemia diagnosis, Dani is about to finish his university studies. Recently, he has returned to the hospital wards to do his placement alongside the professionals who treated him as a child. "When I started studying medicine, I was very clear that I wanted to specialise in leukaemia and work at SJD Hospital. Then, as I tried other specialities, I changed my mind. And recently I was leaning towards anaesthetics. But doing my placement here has rekindled my interest in oncology," he explains.

Member and president of KIDS Barcelona

Daniel has never stopped coming to SJD Barcelona Children's Hospital. He was still undergoing treatment when one of the doctors attending him suggested he could join a team of young people collaborating with the hospital by advising the centre's researchers. "It's very important that patients have a voice and contribute our perspective to research projects, but I didn't know it was possible. I found it so interesting that I signed up straight away."

In 2018, Dani joined KIDS Barcelona, a group of young advisors created by the Hospital in 2015 to involve patients in research, innovation and medical care. Two years later, in 2020, he stood for election and was elected president. As a member of KIDS Barcelona, over the past seven years he has attended numerous conferences and talks around the world to raise awareness of the work of this advisory body.

Dani comments: "This dual role of being a patient and a member of KIDS Barcelona allows me to connect particularly well with professionals and raise their awareness of the importance of involving patients in research. I have often found that, after my talk at a conference, a professional will approach me to ask for our collaboration on an initiative."

Internally, at SJD Hospital, and together with his colleagues from KIDS Barcelona, Dani has taken part in reviewing informed consent forms for clinical trials and other outreach materials aimed at children and young people. He has even had the opportunity to publish a research article.

A team of German researchers asked the KIDS Barcelona group for help in establishing criteria to assess the degree of acceptance of orally administered medicines in children. After some time, they published the results in a scientific journal and included two KIDS members as authors. "Being part of this group and being able to contribute my experience as a patient has been and is a very important part of my life. I hope to be a part of it for a long time and to contribute as much as possible so that the voice of patients continues to be present in healthcare and research," concludes Dani.