Transparent
"Within EiB, we take a holistic approach," says Smeets. "It's about the quality of life of women. That involves a lot more than cutting out the disease." The expertise center therefore employs a team that consists of urologists, radiologists and surgeons in addition to five gynecologists as the main practitioners. They are supported by a psychologist, physiotherapist and dietician. "They are all dedicated professionals who only work in our center of expertise," explains Smeets. "In this, we are unique in Europe. Last year, we were accredited as a center of excellence by the EEL (European Endometriosis League). Only five of these centers exist in Europe. The chief reviewer called us 'best organized center in Europe, so probably in the world'..."
The strength lies in continuously improving processes, Smeets explains. EiB does that in collaboration with Medtronic. "The basis for that collaboration was laid when a patient came to talk with Maddy at our annual Patient Event. That was such an impressive story," says Maarten Akkerman, Senior Director Medical Affairs & Value-Based Healthcare North Western Europe at Medtronic. "EiB knows all about endometriosis care, we know all about optimizing care processes. So, we joined forces. One of the key points was: how can EiB show that they are the best at what they do. That's only possible by being very transparent."
That all starts with measuring. Measurement is the key to knowledge. From the outset, Jeroen Metzemaekers, a physician-researcher at LUMC, has been using PROMs (Patient Reported Outcome Measures) and PREMs (Patient Reported Experience Measures), Maddy Smeets reveals. "They are made visible on a dashboard. One of the parameters, for example, is shared decisionmaking. Initially, we scored only 7.2 on that. The other scores were much higher. So, together with Medtronic, we started looking at how this can be improved. The next step is to train our professionals again." In this way, transparency is further embedded in the organization step by step, Maarten Akkerman explains.
In charge ourselves
"EiB opts for a holistic approach and that cannot be fully captured in protocols," says Smeets, "but it can be captured in certain practices. We have fine-tuned the care paths in collaboration with Medtronic. This is possible because the clinic treats many women. The power is in the numbers. While in a regular gynecology practice I saw about three hundred new patients every year, here I see sixteen hundred each year. We perform four hundred operations annually. Our radiologists see about a thousand MRIs a year. They build a database consisting of gynecologists' ultrasounds, images during surgery, and postoperative images. There is no radiologist in the Netherlands having so much know-how about this disease."
Because of the numbers, a clinic becomes more efficient and achieves better patient outcomes, Akkerman explains, but more importantly, it builds expertise. He compares the focus to that of an athlete at the Olympics. "You practice for one discipline and then you win a gold medal. You don't win medals if you want to compete in every event."
Because of their knowledge and experience, EiB can live up to an important principle. That is: the patient is in control. Maddy Smeets: "Most women have gone through such agony before they finally end up here. It starts in secondary school with one week's absence every month. By then, you are already falling behind. They have problems with work, social life, finding a partner, sex, having children. In every phase of life, there are different issues. We want to help them regain control of their own lives."
The center of expertise does this by using women who speak from personal experience, as its ambassadors, Smeets explains. They are present, for example, when new patients receive information about the treatment and an operation. These are sessions with about fifteen to twenty women and they usually lead to fellow-sufferer-like contacts, she explains. "Especially with a chronic disease like endometriosis, it is important for a woman to have control over her own life," the gynecologist emphasizes. "But she can only take good decisions if all the options and side effects have been explained. If everything has been discussed, then a woman has to process it at home first. We also link the consultations to one or more appointments with our psychologist. By mirroring and asking the right questions, she can give the patient insight into what she really wants. A psychologist can do that much better than a doctor."
Future-proof
Most of the women who come to the expertise center are from outside the region. "Because we work a lot on awareness and because people talk about us on social media, more and more young women come here," says Maddy Smeets. "Fortunately, they are also coming sooner now. We offer a self-test on our website. Women can take that to their family doctor for a referral. These tools help to raise the alarm more quickly."
It is important to raise awareness among general practitioners, which is why EiB organizes a webinar twice a year. Patients of EiB also receive two sheets of information for GPs, explains Smeets. This is very much appreciated by the medical professionals, she observes. "The need for knowledge of endometriosis is only increasing. As long as there is no medicine, the group of women who have to deal with it, is only growing. In the past, women with endometriosis could not reproduce at all. Now, with all the possibilities of IVF, they can, but there is a hereditary component to this condition. So, many more women will have to deal with it."
Maddy Smeets sees the Hector Treub prize as a nice boost. But she is especially proud of what "her" EiB consist of after all these years of work. "I enjoy the whole process of setting up and optimizing this clinic, the ups and downs. The best part is that I can pass on all the knowledge to an enthusiastic new generation that will start working here. I now know: this clinic is future-proof."