The patient's vote

Exploring possibilities for patient involvement in translational molecular medicine


  1. What characteristics should an approach to patient involvement have to suit the translational phase in molecular medicine, and to improve ethical reflection within translational research?
  2. What is the feasibility (within CTMM) and the added value (in general) of this approach to patient involvement in translational research?

Duration: January 2012 - December 2013.

The classic model of research for medical applications is straightforward. Take for example rheumatism. First, fundamental research is conducted on the mechanism that underlies this disease. This results in a point of department for medicine. These are then developed and tested, first on laboratory animals and subsequently on humans. Eventually, if all goes well, a drug comes onto the market. 

In practice this process is stubborn and more complex. It is a matter of constant feedback, side-paths and dead-ends. On top of that, applications that were created on the drawing board often fit in poorly with the wishes of patients or even encounter resistance. It would be wise to involve patients in this research. This study investigates in what way and when can patients best be involved in the research. 

Earlier studies have investigated to what extent patients can contribute to the composition of the research agenda  - so before the research actually starts. This project investigates the role of patients in the development of the projects themselves. The extent to which patients have some weight in this will strongly depend on the disease. The development of a new treatment for rheumatism is something completely different than developing a massively applied flu vaccine. The researchers will map this using several case studies, one of which being an individually optimized treatment for cancer based on DNA research. Such research can reveal information about other health risks. Do patients really want this to be in store for them?

Furthermore, this project will also investigate the attitude of scientists towards patient involvement. Researchers are often reluctant to the involvement of patients, while they actually can make the research more relevant.