LUMC and Amgen Develop Outcome Set for Osteoporosis

Dr. Liesbeth Winter – LUMC

Jannie van den Broek, MSc – Amgen

Leiden University Medical Centre (LUMC) already had an osteoporosis care pathway, which led to improvements in the quality of screening patients for this disease. “But is that what matters most to our patients?”, says Liesbeth Winter, Internist-Endocrinologist. “We wanted to improve our osteoporosis care at the patient level, so we tried to identify patient-relevant outcomes as the basis of our treatment plans.” LUMC found a valuable partner in Amgen. “Amgen has experience in creating outcome sets and they were willing to partner with us to develop an outcome set for osteoporosis,” says Winter.

“want to move beyond being a supplier of successful medicines and become a supplier of successful treatments”


This willingness had everything to do with Amgen’s own transformation. Director of Value, Access & Policy Jannie van den Broek explains: “We want to move beyond being a supplier of successful medicines and become a supplier of successful treatments. In order to complete that transformation, we have to work with healthcare professionals and patients to determine what outcomes form the basis of a successful treatment. The outcome sets of ICHOM (International Consortium for Health Outcome Measurements) are a good starting point. But if there is no ICHOM set for a particular treatment yet, we work with treatment providers and patients to create one. We had already seen in previous projects how important it is to involve patients from day one, so we made sure to do that here as well.”

The essence of the partnership is co-creation, she states. “Not all hospitals are equally open to that”, she says. “On top of that, when we start a project we always look for professionals who are prominent in their field. We concluded that LUMC fits the bill on both counts.”

“how important it is to involve the patients in the process”

Outcome set

LUMC hosted four workshops to create an outcome set for osteoporosis. “We realized how important the preliminary work of setting up a care pathway had been and how important it is to involve the patients in the process”, says Winter. “There is some scepticism in the field about the usefulness of a second bone density test soon after the treatment, but we discovered that it’s really important to patients. The reason they appreciate it so much is because it’s reassuring for them to know the test results, and it encourages therapy compliance. So we’re going to make this adjustment to meet this patient need, because it’s important to us that the care we provide is valuable to the patient.”

Van den Broek: “We can relate to this because we received the same feedback from previous projects. Responding to concerns that are relevant to the patients increases the value of the treatment and forms a long-term basis for shared decision-making and for helping patients to take ownership of their care.”


Next: implementation                                 

“Now that the outcome set has been developed it needs to be implemented, but we still have to make a few modifications in terms of process and IT. The plans are ready, and the implementation phase is right around the corner. We hope to implement everything quickly so we can start directing our care towards the desired outcomes. This will help us understand how the care we provide contributes to the quality of life of these patients and how we can continue to improve.”