Collaborating with data
Data are indispensable for the organ and tissue chain. They form the basis for good care, collaboration, and research.
What does data-driven working yield?
- More knowledge, new insights, and innovations: by stimulating (inter)national research and innovation.
- Better and more efficient collaboration with data: by collecting data in one place.
- More and better donor organs and tissues: by monitoring, optimizing, and innovating processes in the organ and tissue chain.
- Better forecasting and rapid process adjustment: through analysis of current data.
- Better care for patients: through quality criteria and follow-up data.
Which data is involved?
The data we collect concerns processes in the field. In every process step, we collect and process data, for example about the donor or the quality of the organ or tissue. With this information, we monitor the quality of the process steps. This allows us to quickly see what is going well and where improvement is needed at a local, regional, and national level. And it brings to light mutual differences between centers (benchmarking). That is why close collaboration with hospitals, laboratories, researchers, and other partners in the chain is essential.
Together with partners in the chain, the NTS collects data in the field of donation, allocation, and transplantation.
Donation data
All steps in the donation process are continuously monitored and made transparent with dashboards. We have been collecting data for years. This makes it possible to visualize trends.
In numerical dashboards, you will find, among other things:
- Number of donations this year and trends over the years.
- Donor characteristics.
- Which organs or tissues have been transplanted.
Waiting list data
We keep track of waiting list figures for organs and tissues (heart valve and eye tissue). In our data dashboards for organs and tissues, you can view the total waiting list or data per organ.
Here you will find, among other things:
- How many people are on the waiting list?
- How long do people wait?
- What are the characteristics of the patients on the list?
Transplant data
We have been collecting data on transplants for years. This makes it possible to identify trends. You can filter by type of organ or tissue.
In the data dashboards, you will find, among other things:
- Number of transplants this year and trends over the years.
- Characteristics of recipients.
- Time on the waiting list.
Data on follow-up after transplantation
In the Netherlands, transplant data is recorded in the Dutch Organ Transplant Registry (NOTR). The transplant centers (UMCs) register the outcomes of kidney, pancreas, heart, lung, liver, and corneal transplants.
Based on this data, the NTS makes data available at a national level for organ and tissue advisory committees. For example, survival rates are displayed in survival curves based on aggregated patient data.
Quality of life data (PROMs)
In addition to medical data, there is increasing attention for the quality of life after transplantation. How does the patient experience living with a donor organ?
We measure this using PROMs: Patient Reported Outcome Measures. By linking PROMs to medical data, a more complete picture emerges: not only whether a transplant is technically 'successful', but also whether the patient actually feels better and can participate in society.
National PROMs project
The PROMs Transplant Care project is currently underway. In this project, healthcare professionals from all Dutch university medical centers (UMCs) are developing a uniform set of PROMs for organ transplant care that can be used nationwide.
How the NTS supports collaboration partners
The NTS supports collaboration partners who work with data:
- We are working on one central data platform.
- We build and improve applications together with users.
- We monitor processes and perform data analyses for research and policy.
- We handle data requests.
- We share knowledge and methodological expertise in the design and execution of scientific research.
Working with data safely and carefully
We work within clear legal frameworks. Transparency, diligence, and respect for privacy are paramount. All agreements, policies, and processes are laid down in our data governance.
Data platform: all data in one place
Our principle is that you only record data once. Together with partners, we are building a data platform over the coming years, which ensures:
- Overview: By collecting data from the entire organ and tissue chain in one place, a complete picture is created, which helps to organize processes more intelligently.
- Quality improvement: Up-to-date data make it possible to quickly identify what is going well and where adjustments are needed.
- Research and innovation: By making data available to healthcare professionals and for (inter)national research, we contribute to knowledge development and better care.
NTS data dashboards
- On our website, you will find interactive data dashboards for a broad audience.
- Healthcare professionals have access to comprehensive data dashboards in their field via a private platform (member site).
From practice
Internist-nephrologist Stefan Berger enthusiastically explains how this works in practice.'I can get an incredible amount out of the kidney dashboard'.