Digital follow up cancer patients
More and more people survive cancer, but the side effects of the treatment often continue long after therapy has ended. In 2009, with the help of an NWO grant, Tilburg University and the Netherlands Comprehensive Cancer Organisation (IKNL) established the PROFILES registry (Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship), that combines population-based cancer registry data with patient-reported outcomes. The data in the system formed the basis of a great deal of research.
The PROFILES researchers conduct a variety of studies. Patients can be monitored, also after treatment has ended, based on information they voluntarily provide through questionnaires. What side effects occur and why? How are they doing otherwise? How can the care for individual patients be improved? The data of all studies is being saved in the PROFILES Registry. To make the clinical data of patients available for analysis, the data is linked to the data of the Netherlands Cancer registry. The wealth of data gathered this way provides new insights on the basis of which treatments can be adapted. The data is available for non-commercial scientific research.
In 2016, a start was made to expand the system, which is administered by IKNL. NWO supports this project with a €1.9 million grant.
- The project is headed by Professor Lonneke van de Poll-Franse, approximately 20 health scientists, medical professionals, and psychologists conduct research using this data.
- Researchers other than those of the PROFILES project are involved also with the help of an NWO grant.
- The data is shared via www.profilesregistry.nl and is used for further research.
- By expanding the system, researchers aim to identify the mechanisms of health problems after cancer. Besides questionnaires, use is made of, for example, blood samples, skin patches with sensors, lifestyle apps, and cognitive tests. With these tests, the researchers hope to clarify why some patients suffer side effects while others do not.
- Since 2016, it has been possible to give feedback to the patients on their test scores. Patients also have the option to receive feedback on how they are doing compared to patients in a similar situation. The subject of the research is whether this contributes to ‘patient empowerment’.
- So far, more than 20,000 cancer patients and survivors have participated.
- Doctors now know more about side effects of certain types of therapy and can take them into account.
- Some cancer treatments have been adapted to limit side effects, including those of non-Hodgkin lymphoma, early-stage cervical cancer, nerve damage after chemotherapy for colon cancer, and fatigue following the treatment of lymphoma.
- Information to patients has improved as a result of personal care plans.
- The problem that cancer patients struggle with getting a life insurance or a mortgage was discovered, which led to questions being asked in Dutch Parliament. Consultations on some of these issues are taking place between patient organizations and the Dutch Association of Insurers.
- Many scientific publications are based on the available data.
- The registry will also be introduced at The Royal Marsden in London; a hospital specializing in cancer care, treatment, and research. Australia has also shown an interest in the system; the region of Southwest Australia already uses data from the system for research.
- NWO (The Netherlands Organisation for Scientific Research) -In 2009 medium sized grant, in 2016 large grant: 2.2 million in euros.