the importance of being “more than a patient”

Developing art and creativity to improve the efficiency and delivery of health care. From narrative medicine to the disclosure of one’s medical records on the net: how the feelings and fears of “open sourcing” can help fight cancer and reshape the concept of “cure”

When Salvatore was diagnosed with brain cancer, he made headlines around the world. International media like CNN and the BBC presented him as “the hacker who decrypted his medical records to create his open source therapy”. “That wasn’t the goal,” says Oriana Persico, his partner in art and life until he succumbed to the disease last summer. “By recovering his own data and making them available on the net, he has taken a “bio-political act‘. He did not question the authority of medicine, but the place of the patient and of illness within our societies. He wanted to free them from the narrow perimeter of the relationship with the medical profession and fuel a wider human exchange, also involving former patients, artists and ordinary citizens“The result was an overwhelming stream of over 15,000 contributions in just a few weeks.” I received suggestions for medical treatments, but also art, videos, poems and messages simply saying, “I I’m here for you!” recalls Salvatore. from the stage of a TED Talk. “Why did I do all this? Because I wanted to produce substantial social change, redefining the word “cure”“.

What Salvatore lacked was an approach that took into account the patient in all his human complexity. “Once you’ve been diagnosed with cancer, you just become a patient, a set of medical records,” he said. “As a human being, you ask yourself a lot of big questions: ‘Can I still have sex? Can I still work? What can I still do?’ Medicine does a great job, but often ignores many of these issues.” His words are echoed by another cancer patient, quoted by the Curetoday site: “I no longer recognized myself. Going through tests, scans, and surgery, I discovered that my identity changed from that of a strong, empowered individual to that of a tired, scared cancer patient. I looked like a patient, I acted like a patient, so surely I was one.” Such questioning depends on the sudden and overwhelming changes produced by the diagnosis, explains Sofía Luque Suárez, psychologist at the Spanish Association against cancer, AECC. “Patients would like to be like before, but cancer changes them. This is where the problems with the “outside world” come from: in the eyes of society, you continue to be the same person, but you are no longer.”

The key word behind such an emotional earthquake is “uncertainty”. “All of a sudden, everything becomes unknown,” says Luque Suárez. “You don’t know how your family will cope with your cancer; you don’t know how your professional environment will react. And you don’t know, above all, if the treatment will succeed. Life expectancy is obviously the main concern. According World Health Organization figurescancer is the second leading cause of death worldwide, accounting for nearly 10 million deaths in 2020. To provide a therapeutic response to one of its deadliest forms, pancreatic cancer, the European Ulises project aims to define a new strategy based on nanotechnology. “Nanoparticles in themselves are a delivery system,” explains Cristina Fillat, project coordinator and researcher at the Barcelona Clinical Hospital, IDIBAPS. “You can see them as cars, carrying something in their truck. In our case, they deliver plasmid DNA, aiming to transform the tumor into something that will be rejected by the patient’s body as can happen during transplants. We’re basically trying to convert the tumor into something similar to an organ that would be incompatible for the patient, causing the immune system to attack it.”

Attack, fight, war. The “cancer verbal toughness” is reflected in the use of terms, which ultimately puts pressure on patients. “What does it mean if you lose the battle?” asks one on an Internet forum. “Haven’t you been brave enough or fought hard enough?”. “People who tell you to keep fighting when you’re feeling weak make you feel like you’re doing something wrong or being cowardly. The physical and psychological distress trickles down to friends and family, who would like to help but often don’t know how. “Patients often tell themselves that they have to be strong, that they don’t have to be sad or angry. Instead of guessing what they need, we should help them express their feelings first and how they manage the disease.”

Helping patients to express their emotions is also one of the objectives of “narrative medicine”. Born in 2001 at Columbia University, he is presented on his website as a “interdisciplinary field that brings powerful listening and creative storytelling skills from the humanities and the arts, to meet the needs of all who seek and provide health care“. Its aim is to enable patients and caregivers “to express their experience, to be heard, to be recognized and to be valued”, thus improving the delivery of health care. “We try to develop the skills to understand, to interpret, to feel,” says Rita Charon, head of the division of narrative medicine at Columbia University. “And since these skills are best acquired in the field of art, we teach people how to write, how to paint, how to read. All of the memoirs and blogs that patients write are basically a scream, which means: “Hey, look at me! I am a human individual! I’m more than the gallbladder in room 302′!

To feel seen, heard and recognized in all its complexity, as Salvatore also claims with his disruptive act, has a concrete impact on the effectiveness of the therapy“Does it shorten the course of a heart attack? I have no idea,” Charon says. “But that makes it more likely for a patient to come to that doctor for the next appointment, take the pills, or follow the diet he recommended. It’s not only a question of psychological well-being but also of confidence“. And trust is exactly what Fillat calls industrialists: “Once the Ulises project is finished, the fastest way to make our therapy available would be to be funded by big pharma. The results of our in vitro tests are encouraging and we will soon move on to proof of concept, but clinical trials are far too expensive for any academic partner.” The urgency of developing new therapies is confirmed by the statistics . In 2020, just under half a million people were diagnosed with pancreatic cancer and more than 465,000 died from it. Among the ten most common cancers with the highest incidence-to-mortality ratio, it is at an advanced, incurable stage with five-year survival rates of about 5%.

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