The aim of PCOR-MII is to foster the collection of digital patient-reported outcomes (PROs) in the healthcare setting and to integrate them with other types of medical data - for example on diagnosis and therapy - to ultimately enable research on relationships between subjective and objective parameters for therapy success.
Learn more about the projectDue to increasing life expectancy and a growing proportion of older people in industrialised countries, chronic diseases now account for more than 80 percent of the global disease burden. This results in new challenges for medicine: Optimised and multidimensional disease management strategies must be developed while pursuing improved quality of life as a central treatment goal.
In doing so, it is crucial to include the patient’s perspective. Patients best understand the impacts of their disease and can provide valuable insights into the effectiveness and tolerability of therapies. An inclusion of the patient perspective not only leads to patient-oriented, individualised treatment, it also enables faster interventions if their health status worsens and strengthens the therapeutic relationship. This enables comprehensive, holistic care that takes into account both objective medical indicators and the subjective well-being of the patient. The measurement of the subjectively experienced state of health with the help of patient-reported outcomes (PROs) in the form of questionnaires plays a crucial role in making this vision a reality.
The aim of the PCOR-MII network is to foster the collection of PROs in the healthcare setting and to integrate them into the national core data set of the Medical Informatics Initiative (MII). This will enable researchers to study the relationship between the subjectively perceived health status and other medical data types - for example on diagnosis and therapy.
The solutions developed by PCOR-MII's will be implemented in three clinical application areas:
For anorexia nervosa, the aim is to better understand risk factors, for persistent somatic symptoms the aim is to identify effective treatments and for kidney transplantation, the goal is to ensure adherence to medication regimens.
PCOR-MII is a collaborative effort that brings together patient initiatives, medical informatics specialists and clinicians from various disciplines from 11 MII sites, as well as international initiatives and technology partners. The project ties in with the developments of the Network of University Medicine (NUM) and places a special focus on user-oriented design as well as legal and interoperability aspects.
An overview of other MII use cases and projects can be found on the MII website.