In the context of the requirements of the VIPP-5 subsidy program, many hospitals are working hard to realize PBLs for patients. The deadline for the technical realization of PHEs is September 30. The deadline for the actual use of the PHEs is later. However, that has not prevented Alrijne Hospital from making their own PBL possible for MS patients.
PGO & shared decision making
Since 2015, the Leiden Alrijne Hospital has been working on an online environment where MS patients can monitor their illness. This is an initiative of neurologist Elske Hoitsma. The idea for this PBL is the outcome of a large patient satisfaction survey, explains Hoitsma. “We work on the basis of shared decision-making and we like to involve patients in the treatment. MS is a chronic disease that often starts at a young age and can lead to permanent disability. The disease can be treated better and better, but choices are very personal. Making decisions together is therefore very important to us. For example, what is the treatment that best suits someone personally? One is also willing to take more risks than the other. In short, intensive monitoring and shared decision making is especially important for this group of patients.”
PBL provides patient and care provider with tools
During an evaluation of a patient study, MS patients indicated that they were very satisfied with the personal contact with their practitioners. But they also reported that the monitoring of the disease could be improved and that there were opportunities in the exchange of data between healthcare providers. An own PBL for this group of patients turned out to be a good solution for the identified challenges. Hoitsma: “Patients and healthcare professionals continuously add information in a PBL, so that you can make good decisions together. A PBL is also an ideal opportunity to provide patients and practitioners with good insight into the course of the disease, because various data are collected in one place.”
Digitize so that there is more time for patients
The idea was to create an online environment where patients themselves can actively monitor their illness by, among other things, filling in questionnaires. Care providers can also add information. The goal was to be able to work more efficiently and to give specific attention to patients, in other words: digitize what you can, so that more time remains for the patient himself. Having the idea for a PBL is one thing, but the realization turned out to be a lot of work.
After a pilot in data exchange, Hoitsma developed ‘her’ PBL with the ICT department of the Alrijne, Curavista – which supplied the platform – and Enovation – which was responsible for ‘the highway’. Then came the crucial testing phase. “We started with one patient and he didn’t experience many unforeseen hiccups in the system. We then started testing the platform on 30 patients. There were still problems, which we solved.”
Rolling out PBLs was technically complicated
Ultimately, the platform was rolled out across the entire population of MS patients, but new issues emerged at each stage. Hoitsma: “I did not foresee that it would be so complicated from a technical point of view and that there could be hitches on so many different fronts. But that has now been solved, the exchange is running well, although sometimes there are still some problems with the data exchange. It turns out that a helpdesk is not a superfluous luxury, so that patients can receive advice and help with use.”
This article is a short summary of the conversation with neurologist Elske Hoitsma. If you want to know more about this initiative in the Alrijne Hospital, you can listen back here to the full NVZ podcast conversation about PBLs for MS patients led by Ana Karadarevic and Christine Leenen.