In this interview with MEDICA-tradefair.com, Dr. Nils B. Heyen talks about patient science, explains how it is applied in a very open project and describes what it could offer patients compared to professional science.
Dr. Heyen, what is patient science?
Dr. Nils B. Heyen: Patient science is based on the established concept of citizen science, that being scientific research that involves citizens. For our patient format, we have chosen a special group of citizens we want to actively involve in research.
You recently launched a research project on patient science that is also led by you. What is the objective of this project?
Heyen: First, we want to study a key problem pertaining to the everyday lives of cystic fibrosis patients and their family members. The goal here is to help improve their daily lives and manage the disease. This is aimed at the group of patients that actively participates in this research endeavor.
Secondly, we want to identify the potential and limitations of patient science to broaden the methodology spectrum of citizen science. Maybe it lends itself to an increased use in the health sector. Having said that, this endeavor might also reveal obstacles that make this particularly difficult.
What advantage could this have for medicine?
Heyen: At the moment, citizen science garners increased international attention in terms of what it might bring to the table for the research sector. This varies from specialty to specialty. There is little experience in health research when it comes to involving patients in this manner. Needless to say, there are clinical trials but patients are not nearly as actively included as is the case in the patient science format.
One of our objectives with this project is to explore the potential of this format. For example, you could use it to address concerns where professional research is not aided by public funding or industry support. What’s more, unlike professional research, the active participation of patients could give us a different perspective and thus deal with questions that are especially useful in managing the daily activities of patients.
What made you choose the subject of rare diseases and cystic fibrosis?
Heyen: Rare disease research is often more difficult due to medical and even economic reasons because there is a limited number of patients and not much industry interest. Hence the potential to meaningfully complement professional research is especially great in this instance. Having said that, we need a field where we can recruit patients by using established structures. There are powerful self-management structures set up in Germany that we can utilize to elicit participation and communication.