Strategic action plan for rare disease patient care

Rare disease expertise centre

Osteogenesis Imperfecta (OI) is a rare and inherited connective tissue disorder. OI patients often have many different disorders, for example affecting the skeleton, eyes and lungs. Perhaps the most characteristic are the ‘fragile bones’ of OI patients, and healthcare providers in The Netherlands sometimes do not know how to go about caring for these patients.
The Orthopaedics, Internal Medicine (Endocrinology), Clinical Genetics, Rehabilitation Medicine and Occupational Therapy departments of a large teaching hospital have been working together intensively and successfully for years to provide healthcare for people with OI. It is time for the next step: recognition of the existing expertise and more national recognition so that more patients can find their way to receiving excellent care. The hospital has asked Vintura to assist the team in creating a strategic plan to realise these ambitions.

Multidisciplinary approach: everyone contributes

To get a better picture of the situation and the ambitions, we first got together with the client to identify the main issues that the hospital wants to achieve in the coming years with respect to healthcare for OI patients. We then posed this question to each of the involved healthcare professionals, and used all of their answers to draft a proposal for the shared ambitions. We subsequently identified what is required to achieve the ambitions.

Broadly supported plan with a large impact for patients

Because the healthcare professionals and patient association have worked together to coordinate the plans, we can conclude that the result is a very broadly supported plan with focused ambitions that will enable the team to make progress in the future.

The hospital has been making tangible improvements as a result of this project. For one, patients will be assigned a more important role: by the end of their three-year check-up, they participate in the multidisciplinary meetings themselves. In addition, the hospital will be working with the patient association to examine what patient outcomes are most important to them according to VBHC principles. The hospital can subsequently measure these outcomes and improve them on an ongoing basis. For OI patients, these changes make a huge difference.