Due to demographic changes, chronic diseases now account for more than 80% of the global disease burden. In the future, better disease management and a better quality of life, considering patients’ perceptions, must also become central treatment goals.

The PCOR-MII project is based on developing robust methods for assessing patients’ perceived health status. To this end, patient-reported outcomes (PROs) are to be integrated into the core data set of the Medical Informatics Initiative (MII) and a comprehensive real-word evidence network is to be created. The added value of systematically recording and integrating PROs will be demonstrated in the following clinical use cases:

1. Anorexia nervosa has the highest standardized mortality rate of any mental illness. Combining biomedical and psychosocial data is essential for stratifying treatment to improve long-term outcomes.
2. In the case of persistent somatic symptoms, broad-based surveys of PROs are required to capture the complex development processes that go beyond traditional diagnostic classifications and affect up to 10% of patients in primary care.
3. Adherence is considered the fifth most important criterion for the life expectancy of kidney transplant patients. Ambulatory physical health monitoring can improve adherence, enable timely adjustment, and thus reduce graft failure rates.

PCOR-MII is a collaboration between patients, medical informatics scientists and clinicians from 11 MII locations as well as international initiatives (H2O, PROMIS) and providers of software for recording PROs.

The MeDIC Münster takes on the following tasks in this project:

1. Development of preliminary, harmonized representations of PROs, followed by an extension module for the MII core data set, participation in the development of PROM harmonization pipelines
2. Creation of a PROM interoperability and harmonization guide and collection of recommended PRO questionnaires
3. Integration of data and PRO assessment systems with the data integration centers of the MII sites and customization of the dashboard
4. Participation in clinical use cases