"We talk about patient involvement in research a lot, but it truly becomes clear what that means when you meet each other, experience something together and hear what the other person really needs,” says Paul van Duuren, staff advisor Patient Involvement at the UMCG, when he is asked why he organized the event.
Alice Faber, owner of the company ‘Het Eerste Bedrijf’, was the conductor of the evening. To her first question on why people would join medical research, which often requires a lot of energy from the patient and can involve painful procedures, she gets an answer that silences the entire room: “Otherwise you die.” The woman explains that she has been living with a rare form of lung cancer for over ten years. She would not have been able to join that night if not for research on treatments that prolong life after a cancer diagnosis.
This honest answer paved the way for other personal and inspiring stories, such as a girl who suffered from leukemia and now joins research “without even really thinking about it”. For her, it is a way to help others who are in a similar situation she has been in yet are less privileged in life and therefore not always able to join research.
A man who has aphasia says he grabs every possible opportunity to bring a patient's perspective to the table when it comes to research: “If somethings happening, I'm there”. Many others in the room share the same eagerness to contribute to research in their own way and have a degree as an expert by experience or are part of a sounding board.
It did not last long, however, until a woman remarked on the clear distinction in the room between researchers and patients. “In the end, we're all patients”, she says.
She herself struggled with her dual role as patient and researcher after being diagnosed with the same disease she had been studying in the lab for years. “When you have a PhD on a topic or disease, you have no idea what that actually means.” She knew all about the mechanisms behind the disease in mice but had no clue what the disease meant for people living through it every day until she faced that reality herself.
She was once asked what should be researched according to her. She realized she immediately knew the answer as a researcher but found it hard to answer that question from a patient's perspective, showing the importance of patient involvement, not just during a study but also while developing relevant research questions.
Each experience was played back. By acting, with a song or even with a poem. All created on the spot. For the woman who is both researcher and patient, one of the actors played the researcher and wondered: “What would it be like as a patient?” She then stepped in front of another actor and wrapped his arms around her body, immediately hunching over as the weight of that reality kicked in. That weight was quickly lifted from her shoulders as soon as she stepped out of that ‘role’ again.
The moment the actors started to play back the experiences, the person who shared the story giddily laughed at their neighbor in recognition or was visibly moved upon seeing their own story played back right in front of their eyes. Others were quickly motivated to share their experiences.
After the show, it was clear that the stories resonated with many people in the room. “I recognized a lot of things, but the story about the woman who is both researcher and patient really hit home for me", shares someone who used to be a doctor but is now dealing with several chronic illnesses.
All these stories show how valuable a creative medium can be for understanding what it is like to be on the other side and how a different perspective can make research, and the outcomes, more meaningful to the people research is ultimately done for. The worlds get even closer in a setting outside of the hospital, on neutral territory. As equals.
