“It is crucially important to share data. We should be doing it more often.”
Dr. Floortje Mols, researcher at CoRPS, Tilburg University
“What I think is great about PROFILES is the close collaboration with doctors. We can immediately follow up and do research on questions from daily clinical practices and queries by patients. This is quite exceptional compared to other healthcare areas. By sharing data and combining studies, we have been able to change entrenched ideas. It is crucially important to share data. We should be doing it more often.
It all began thirteen years ago with my PhD research. At the Integraal Kankercentrum Zuid (what is now the IKNL, the Netherlands Comprehensive Cancer Organisation), where I was working at the time, there was a need for information on the quality of life of cancer survivors. The IKZ’s epidemiologists had no clear idea concerning their patients’ quality of life, after the treatment of various tumors.
Gradually the need emerged for standardization in a large database. At firs,t I thought it couldn’t be done, but, in small steps and with the right people who had faith in the project, we managed in the end. The NWO has even given us two grants. But we could never have imagined beforehand that the project would take off in this way. In the meantime, we have been collecting data of more than 20.000 (ex-) cancer patients, whom we have been following for a short or long period of time after their diagnosis.
In addition, in terms of data, developments have been huge. We already have years of clinical data and data obtained from questionnaires, but also, with the help of the previous grant, we have been collecting blood samples, we have been making ambulant measurements and patients have had the possibility to fill out online cognitive tests and keep online nutrition diaries.
Another benefit is that we really work as a team, right across academic and non-academic institutions. We learn a lot as a result of this collaboration with different disciplines. Even after changing jobs, people continue to be involved in the project and remain committed to the same higher purpose. That is so valuable.
It is great that we have now received € 1.9 million extra, but it is also a great responsibility. We are going to put this money to the best possible use.”