RVB Translational Medicine Book

“From the beginning to the end, it should be about patients.
So they need to be involved in promising research as often
and as soon as possible.”
Ingrid Lether
Manager of Research and Innovation at Reumafonds (arthritis patient organization and research funder)
“Our organization tries to involve patients in the
different phases of research. Patients are part of our
scientific advisory board. They look at the feasibility
and relevance of the proposals. If the result of a
proposal will not change clinical practice, it will not
benefit them. A proposal like that may be scientifically
interesting, but the patients tell us what is really
important. We also encourage researchers to set up
their own groups of patients to help them draft
relevant research questions. A patient can tell the
researcher what is bothering him or her most, for
example. This is of course the preferred option:
involvement of patients before a proposal is written.
We can also ask patients to bring in their perspectives
at meetings with the government and health insurance
companies, to inform our research. From the beginning
to the end, it should be about the patients. So they
need to be involved in promising research as often and
as soon as possible,” Ingrid explains.
In the Netherlands, arthritis researchers from Utrecht
enjoy a good reputation, Ingrid thinks. “There is a
concentration of knowledge about arthritis at Utrecht
University and the University Medical Center. Utrecht
could also be a leader when it comes to spinning off
small companies in this field.” Ingrid says
enthusiastically, “In my opinion, one of the main
achievements of our charity in relation to Translational
Medicine is that we realized that we need these small
companies to bring new treatments to the market.”
UMC Utrecht 59