Lots of progress can still be made by more patient insights and better data management
Healthcare is possibly one of the few areas in society in which the user of the services has barely any voice in the process.
Despite the incredible progress that we have seen in healthcare, the healthcare system is not organised to capture all the necessary information to make the patient pathway more effective and more efficient.
A lot of attention is given to technological inventions, with disproportionally very limited attention to patient insights, to value creation and to organisational innovations. Even in countries with a very accessible healthcare system such as Belgium, Germany or the Netherlands, the differences in patient outcomes differ significantly depending on the hospital where the patient is treated.
Our health systems could become a lot smarter by the use of Real World Evidence at population level, capturing data of what has been achieved, where and by whom, so that we can understand which "best practices" can be replicated and expanded. In healthcare, the availability of recent population-level patient data is often poor, not up-to-date and barely used in designing optimal healthcare pathways. Many governments complain about the lack of sustainability of the healthcare system, while doing little to increase the effectiveness and efficiency of the system.
Patient organisations should determine for their specific disease area in collaboration with government agencies, hospitals and experts how to best organise their treatment pathway, with robust real-world data on patient expectations and outcomes. The collective intelligence of all patients within a specific disease will help design the best possible pathways. Because of this, disease-specific patient organisations should be publicly funded, professionalised and offered the leadership role to improve the current situation.