Improving quality of healthcare through effective data collection

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​What do you do when you want to improve quality of healthcare for cancer patients but you do not have the necessary infrastructure? You create it! That is exactly what Truuske de Bock, professor in oncological epidemiology, and her colleagues did.

The lack of a good data biobank motivated Prof. de Bock to initiate one within the University Medical Center in Groningen (UMCG). Together with the Gynaecology and Oncology department and the sector Oncology, she started a biobank that included the data of patients with an increased risk of hereditary breast and ovarian cancer, which resulted in the pilot for OncoLifeS. Together with her colleague Janny Nagel, Prof. De Bock has successfully been running the project for 5 years now.

Improve quality of healthcare for oncology patients

The goal of OncoLifeS is to improve the quality of healthcare for oncology patients through more effective data collection and efficient use of data by creating an infrastructure. Prof. de Bock noticed that the UMCG had no biobank where data of a consecutive series of oncology patients was stored. Her idea was to set up a biobank as a central hub for information regarding therapies and patients, which could be used by researchers, doctors and students and could be easily accessible. Before this can be realized, it is very important that patients approve that their data will be used in the ‘OncolifeS’ infrastructure, according to Prof. de Bock. She also thinks it is good to make a well-considered decision about treatment, because therapies can be very invasive and expensive, and not every patient reacts to a therapy in the same way. ‘OncoLifeS’ helps to facilitate research that doctors can use to decide what is the best therapy.

Biobank and an infrastructure for researchers

The ‘OncoLifeS’ project is not only a biobank where data are collected but also an infrastructure that researchers can use. This infrastructure links routine clinical data, such as blood samples, with biological samples, such as tumour tissues, and quality of life assessments of patients. The infrastructure consists of fixed routes, all connected to each other, that can be used in many clinical trials, even outside of the ‘OncoLifeS’ project. Prof. de Bock elucidates: “When a vial of blood has to go to a laboratory, for example, it is sometimes complicated for doctors to arrange this transfer. In a big organisation like the UMCG there are a lot of people and many routes, which are managed by different people every day.” With ‘OncoLifeS’ she aims to facilitate the transfer of data through the UMCG to the place where it is supposed to end up.

Outreach activities

Initially, Prof. de Bock invested in creating a network and widespread support to set up the project, and she is currently still expanding her network. She gave presentations about the project to the board of directors, the sector oncology and the tumour working groups. Next to that, the whole project team also participated in a sponsor run. These outreach activities help make the project more visible and obtain more support.

Stakeholders

This project is aimed at participating doctors, researchers and patients, all stakeholders of ‘OncoLifeS’. She emphasizes that ‘OncolifeS’ is really a joint effort: it works because of the support of many people within the UMCG. Next to these stakeholders the company is also talking to a commercial partner to see if revenue can be generated in different ways.

Altogether, the project is running very well. The research facilitated by the ‘OncolifeS’ infrastructure can be used to improve the quality of healthcare within the UMCG, thus leading to more specific and suitable treatment and improved quality of life. In the future, Prof. de Bock wants to keep contributing to the optimization of healthcare.