‘Photo credit: Laloes Fotografie - https://www.laloesfotografie.nl/'

Hartwig Medical Foundation and the Oncode Accelerator Patient Cohorts Platform share a vision for improving this ‘data loop’ to create a learning healthcare system where every patient helps improve cancer care for the next. They collaborate to connect data across the full course of cancer care, including longitudinal clinical and outcome data, genomic information and quality-of-life data, so that it can both guide diagnosis and treatment and advance research and development of new therapies.

“Each of us contributes a different piece of the puzzle,” explains Elise Rinzema, Program Manager of the Oncode Accelerator Patient Cohorts Platform. The Platform brings together 12 national oncology cohorts, which collect patient data and biomaterials from cancer patients across the Netherlands. Hartwig Medical Foundation specializes in complete genomic profiling of the cancer and translating complex molecular data into information that is meaningful for doctors, patients, and researchers. “Hartwig Medical Foundation is a technology institute,” adds Paul Roepman, Clinical Molecular Biologist at Hartwig. “We rely on partnerships with hospitals – and preferably at scale like with the Patient Cohorts Platform, because the numbers matter.”

Closing the Data Loop

“Closing the data loop is about ensuring that data generated during care makes it back to feed into research, clinical trials, and re-evaluation of drugs,” explains Joep de Ligt, Database Lead at Hartwig Medical Foundation.

Two examples underline the impact that closing the data loop can have. Traditionally, PARP inhibitors, used to treat breast and ovarian cancer, were thought to work best in patients with BRCA mutations, and drug labels reflected this. “By analyzing whole genome sequencing data from patients, we learned that PARP inhibitors work well against tumors that have a large number of DNA breaks, which can be, but are not exclusively, caused by defects in BRCA genes,” says Paul. “PARP inhibitors work less well for tumors that don’t have many DNA breaks, even if they do have a BRCA mutation.” This understanding will help doctors make better treatment decisions in the future, and adjust drug labels.

A second example is Cancer of Unknown Primary (CUP), where cancer has spread but its origin can’t be identified. This used to mean there was no standard treatment available, because treatment regimens are matched to the original tumor site. “Using whole genome sequencing data, we can now get a better understanding of where the primary tumor is in about three out of four patients with CUP,” Paul explains. The approach is now reimbursed in Dutch care, opening up treatment possibilities for patients who otherwise had none.

‘Photo credit: Laloes Fotografie - https://www.laloesfotografie.nl/'

Where the Data Loop Still Breaks

The data loop only works if the input data is high-quality. For biological samples, collection and storage methods are key. Clinical data must also be accurate, complete, and standardized. “If survival or treatment data is inaccurate or incomplete,” Joep explains, “researchers risk drawing the wrong conclusions.”

Standardization also allows data from different hospitals to be combined, which is especially important for rare cancers or specific subgroups of patients where the total amount of data is very limited.

“We all need to speak the same language,” says Elise. “By being able to combine different datasets, the data becomes much more valuable.”

Building the Future Together

Closing the data loop requires top technology and expertise, but also trust and collaboration. Standardizing data, aligning systems, and creating common frameworks across diverse partners is painstaking work, but the potential rewards are great. Together, Hartwig Medical Foundation and the Patient Cohorts Platform aim to build a healthcare system where every patient contributes to better care for the next.

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