Nanomedicines have been a great promise in the medical world for years. But hospitals are cautious and citizens fear that they will be injected with robots or chips. That is why a consortium, in close collaboration with doctors and citizens, among others, will investigate how nanomedicines can be developed and implemented responsibly. 'Until now, everyone has been too stuck in their own silos.’
A medicine that can be injected precisely where it is needed, that works longer and that also has fewer side effects: nanomedicines have the potential to greatly improve the quality of life, for example for people with cancer or a metabolic disorder. It sounds like a medical breakthrough. And indeed, preclinical trials show that they are more effective than current medicines.
However, there are some concerns with nanomedicines. They are very expensive to develop and some nanomedicines can affect your DNA structure. In addition, there are all kinds of ideas about nanomedicines in society. For example, some people think that secret listening devices could be hidden in the medicines.
No more pigeonholing
As a result, these promising medicines are not yet finding their way into healthcare. To change this, the new NanomedNL consortium has been set up with an NWA-ORC grant from the NWO. What is innovative about this consortium is that it is not only made up of chemists and physicists, but also social scientists. One of them is sociologist Lotte Krabbenborg. “We work closely not only with scientists, but also with doctors, citizens, patients, companies and public organisations such as NEMO and the Rathenau Institute. Our goal is to develop nanomedicines in such a way that we try to incorporate the knowledge, wishes and experiences of all those involved at every step, thereby making better decisions about what we do and do not develop.”
“Until now, everyone has been too compartmentalised. Scientists developed medicines that they thought were good. Still, when you talk to doctors and citizens, they have very different needs and visions of how medicines can contribute to quality of life and good care,” explains Krabbenborg.
Partly due to her previous research into implementation processes and public debates about new technologies, such as biomarker testing for prostate cancer and digital self-monitoring for patients with chronic diseases, Krabbenborg is aware that these needs and visions can vary significantly. “When it comes to digital self-monitoring, for example, some scientists and companies believe that having more quantitative data about your physical functioning, such as insight into your sleep patterns or cognitive functioning, gives patients more control over how to deal with their illness. The expectation is that patients will adjust their lifestyle based on this data. Our research shows that this quantitative data can have a very different value for patients. For example, they do not want to be confronted with the fact that they are ill every day. Sometimes patients also consciously choose not to listen to their bodies because they value leading a “good life” that is not dominated by illness.”
Krabbenborg notes that during innovation processes, there is not always room to explore these different visions and values and make them discussable. She wants to change that with her research.
Theatre performance
In the coming years, Krabbenborg and two PhD students will investigate the needs, interests and daily practices of all parties involved in the development of nanomedicines. How they will do this has not yet been finalised, but what is definitely planned is a theatre performance in collaboration with NEMO and Mens in de Maak that depicts the dilemmas surrounding nanomedicines for doctors and citizens. “This will address ethical issues such as who can and cannot use the expensive medicines, or what consequences nanomedicines may have for future generations if they actually affect a person's DNA structure.”
In addition, the social scientists will organise several shared decision-making workshops. “In these workshops, we want to bring together scientists and other social stakeholders.” The input gathered during these meetings will help determine how the nanomedicines will be developed. “This way of working together, co-creating nanomedicines, is an experiment in itself. Will it be possible to develop medicines that will find their way to hospitals and patients? Or will it prove too difficult to reconcile all interests and will all parties go their separate ways again?”
The experimental nature of the research appeals to Krabbenborg. Even if the collaboration stalls, it will provide her with interesting insights as a sociologist. “Scientists are increasingly expected to collaborate with social partners in research, but in practice this is not always easy.” This is also due to the scientific system, explains Krabbenborg. “There is a shift underway, but most researchers are still primarily judged on their publications. This sometimes stands in the way of joint learning and exploring each other's worlds of thought and life. This project will also have to produce articles, but hopefully not at the expense of everything else.”