Data and people together make the difference

How do we ensure the right balance between data, the expertise of professionals, and the patient's voice? We asked Erik Verschuuren, internist and transplant physician (UMCG), and Frederike Bemelman, professor of kidney diseases and internist (Amsterdam UMC).

Interactive dashboards

Since 2021, the NTS has been developing interactive dashboards per organ. In addition, dashboards already exist for some tissues. These allow healthcare providers to view data themselves and identify trends based on current information about donation and transplantation. You can find, among other things, the number of transplants, the number of donors, their age distribution, the inflow and outflow per center, waiting lists, and survival rates.

‘It’s fantastic that these dashboards exist,’ says Erik Verschuuren. ‘People abroad are jealous of them. I would ideally like even more data in them. For example, the lung transplant dashboard provides information about the Lung Allocation Score (LAS), a criterion for urgency, but nothing yet about the quality of the lungs in question.’

Further refinement

Frederike Bemelman also considers the dashboards a good first step. However, she believes the quality of the dataset from the Dutch Organ Transplant Registry (NOTR), which is used as the raw material for the dashboards, needs to improve.

‘Refining transplant data is complicated. Somewhere at the beginning of the chain, someone has to enter the data for the first time, and that costs time and money,’ Bemelman explains. ‘There is also a lack of uniform definitions for variables, and regions cannot easily exchange information due to different electronic patient records (EPRs).’

Learning from each other

Meanwhile, a lot of data is being kept at the local level. For example, the UMCG monitors donors who ultimately do not qualify due to quality issues, Verschuuren says. ‘Every week, we discuss the rejected donors. We want to know if our rejection was justified. Perhaps we rejected lungs suspected of an infection, while another center accepted them. We can learn from that.’

Improving quality

Data analysis can help reduce differences between surgeons and centers. Verschuuren: ‘As LOTTO, we have agreed to visit a third center annually with two fellow centers. Based on the dashboard data, we discuss areas for improvement, tested against our quality criteria, for example in the area of aftercare.’

Bemelman also sees data as a starting point for mutual discussion to improve quality. ‘Thanks to the dashboards, we sometimes discover remarkable differences. For instance, fewer older donors are accepted at the AMC than at the UMCG. You can then zoom in on the performance of those older donors. Differences can be a reason for further research into medical causes, but can also lead to, for example, better patient education.’

Making an assessment

In addition, there will always be a need for the personal judgment of medical professionals and patients. It is not just about the condition of the donor lungs. A doctor also weighs the characteristics of the recipient. A doctor often makes that decision alone, for example at night. Data helps in the first instance, but the doctor then makes a personal assessment.

‘For a patient with a rare blood type, you are more likely to accept lungs of lower quality than for someone who can expect an offer every week. And a patient with high blood pressure in their lungs needs lungs that can take a beating. With every donor, you make a probability calculation. Every time, the question is: is this a realistic offer for this patient?’

The human perspective

‘When it comes to the final acceptance of an organ, factors play a role that cannot be captured in numbers and measurements,’ Bemelman also says. For example, her center regularly transplants ‘across donor-specific Luminex antibodies. Having such antibodies increases the risk of a rejection episode, but if there really is no other donor, people are willing to take that risk.’

The human perspective also remains important for a proper interpretation of data, according to Bemelman. ‘There are so many variables. You first have to analyze your information and then see which data are needed to support your hypothesis.’

Focus on data and the patient

In the future, it is necessary to further improve and refine data, both doctors believe. Collecting data uniformly and broadly is good, but it also requires major adjustments to IT systems. Do not let the focus on data come at the expense of the focus on the patient, Bemelman warns.

‘Already, resident doctors spend only about 10 percent of their time in direct patient contact. The rest is spent on computer work, entering data, and administrative tasks. Technology is wonderful, but it takes up a lot of time on the work floor. We need to find a balance in that.’

This article is from Transparant magazine (no. 96).
Curious about more stories and background?Read the full magazine here.