Transparency in Healthcare

Use of technology to ease implementation and benchmarking to realize VBHC in Rheumatology



Transparency in Healthcare @ University of Twente is an interdisciplinary team of healthcare providers and scientific professionals dedicated to improving quality of provided healthcare. We have developed and integrated in daily clinical care for our patients with inflammatory arthritis an online healthcare quality management environment. Within this system, clinical and patient reported outcomes, as well as direct and indirect healthcare costs, including productivity loss are comprehensively tracked over the full cycle of care. This information is made available to patients, clinicians and other stake holders to facilitate shared decision making, shared learning and public reporting of treatment outcomes.

To increase the potential for comparing outcomes across different healthcare providers and healthcare systems we have linked different patient reported outcome measures (PROMs) of pain, physical function, fatigue and overall health related quality of life that are in widespread use in rheumatology to common, domain specific reporting metrics using sophisticated modern psychometric approaches. This scientific innovation allows outcomes to be compared between healthcare providers that have used different PROMs. This measurement system will be useful to link patient outcomes obtained in different patient registries, particularly in an international context and also allows each of the four domains to be assessed using computerized adaptive testing, which provides optimally precise scores for patients using the  minimally required  number of items. Our future ambitions are to facilitate shared learning and public patient reported outcome reporting on a larger scale by connecting different national and international registries and other data collection initiatives using  our common metric approach. As a first step to this we have used data of several large international patient registries, including the United states National databank of rheumatic diseases, the German national databank of rheumatic diseases and the Swiss Clinical Quality Management registry to develop and validate common reporting metrics for physical function, pain, fatigue and overall health.  Several scientific papers have been prepared about the followed methodology and the potential of the approach to adjust PROM scores for item characteristics so that outcomes can be compared when different instruments were used in different groups of patients. The common metric approach is now also an integral part of the ICHOM inflammatory arthritis standard set. We believe that the common metric approach has made it easier for the ICHOM IA working group members to reach consensus on which specific PROMs to recommend, given the variety of available options. We also believe that the common metric approach will facilitate the adoption of the ICHOM standard set in practice because it allows adopters to keep using the PROMs that they may already routinely collect. We also think that the common reporting metrics provide a useful way to compare outcomes collected in the quality of care setting to previous clinical studies and health economic studies, for which particular PROMs are frequently used and paves the way for transitioning towards the routine use of modern psychometric approaches in clinical research and the assessment of quality of care.  Going forward, we will proactively engage various (international) partners who are interested in   harmonization of patient reported outcome reporting by linking commonly used measures  to domain specific reporting metrics.