In NanoMedNL, patients, physicians, companies, and regulators are involved in nanomedicine development from the start

By actively involving patients, citizens, medical practitioners, companies, and regulators from the earliest stages of nanomedicine development, new medicines can be better aligned with stakeholder needs. This increases the likelihood that patients will actually use them. Recently, the NanoMedNL project was officially launched, bringing together nineteen partners to collaborate on a new generation of nanomedicines. During the kick-off event, participants were encouraged to step into the shoes of other stakeholders.

Within NanoMedNL, researchers are developing four new nanomedicines: two aimed at cancer treatment and two focused on gene therapy. However, according to coordinator and Utrecht University professor Enrico Mastrobattista, the scientific component is not the project’s most important focus. “I am confident that the scientific side will work out well,” he said during his introductory presentation. “The most important aspect of NanoMedNL is involving the various stakeholders.”

Identifying issues at an early stage

New medicines do not always reach the patients. Sometimes they fail to adequately meet users’ needs, are too expensive, or are held put by regulatory and reimbursement hurdles. “We want to be able to identify the issues affecting the various parties at an early stage, because that’s when you can really do something about them,” says Wouter Boon, Professor of Innovation and Transition Studies at Utrecht University.

The most important aspect of NanoMedNL is involving the various stakeholders.

Mastrobattista gave an example to illustrate the point: “A while ago, a new nanomedicine came onto the market that suppresses the immune response. Patients had to visit the hospital regularly for an injection, but that did not align well with their preferences. They preferred to take a pill at home, as they were used to doing.”

Patients as equal partners

Stichting Patiëntenstem.nu is one of the patient organisations affiliated with NanoMedNL. “Patients want to be involved as equal partners in the development of medicines. Although this is self-evident, it is still rarely the case. Especially not from the very beginning, as is happening here,” says Veronica van Nederveen, chair of the foundation.

Increase public acceptance

NanoMedNL is also working to increase public acceptance of nanomedicine. For example, during the COVID-19 pandemic, misinformation spread in society about COVID-19 vaccines, which also use nanoparticles. By involving the public early in the process, people can be better informed and their concerns better understood.

Dialogue and reflection

“It’s not just about sharing our story,” says Frank Kupper, who is involved with NanoMedNL through Mens in de Maak. Through theatre, Kupper also aims to encourage reflection and dialogue. “What are we talking about, what does it mean, and what should we do with it? These are the kinds of questions that will be addressed. ” He already worked on a theatre project about nanotechnology in 2009. “Back then, scientists were mainly focused on the science, and that is really different now.”

Jeroen Wiegertjes of NEMO Science Museum sees a potentially unexpected additional benefit in the project’s design: “By involving people who aren’t scientists, different questions are asked. This prompts scientists to think again about why they actually do what they do.”

Workshop

A workshop held during the kick-off event provided an initial introduction to collaboration between parties with different interests. All participants were divided into groups. Two groups, consisting of PhD candidates, were tasked with designing a new fictional nanomedicine and pitching it to the other groups. The remaining groups were asked to formulate questions from the perspectives of patients, healthcare providers, regulators, and the pharmaceutical industry.

The PhD candidate groups were bombarded with questions. How long would it take for the drug to reach the market, is there money to be made from it, and how should it actually be stored? What is its environmental impact, and what are the side effects?

Despite these challenging questions, the PhD students were not discouraged. Quite the opposite. “As a PhD student, I’m involved in scientific research into biomaterials and nanomedicines,” said Bianca Gionkar of Eindhoven University of Technology after the workshop. “NanoMedNL gives me the opportunity not only to think from a researcher’s perspective, but also to gain insight into the questions and needs of the various parties involved in the development, clinical translation, and use of nanomedicines.”