A PROSPECTIVE, MULTI-COUNTRY, MULTI-CENTRE, MULTI-CONDITION FEASIBILITY STUDY EVALUATING THE ESTABLISHMENT OF THE NATIONAL HEALTH OUTCOMES OBSERVATORY (H2O) ECOSYSTEM

The Health Outcomes Observatory project (H2O) is a public-private joint initiative aimed 
at the standardization and collection of patient-reported outcomes (PROs) and their 
(real-time) integration with clinical outcomes/measures at a large, international scale. In 
doing so, our mission is to help facilitate treatment decision-making, empower the 
patient's voice and improve self-management, as well as to support a broad spectrum of 
healthcare research. A significant barrier to the wide-scale collection and utilization of 
PROs concerns the implementation of new technology. In order to ensure that both the 
patient-facing and healthcare provider-facing dashboards/interfaces are user friendly for 
both stakeholders a feasibility study must be conducted. To begin, four chronic disease 
areas will be included in four initial countries. The flow of patient data will be tested for 
fidelity along the newly developed technology structure for each disease area, and the 
data collection system and data retrieval system - including their associated interfaces –
will be assessed for their user experiences and usability. An assessment of the 
perceived clinical utility for both the patient and the healthcare professional is also 
conducted to begin evaluating the change this represents in terms of medical care. In 
addition, a maturity model has been internally developed by the project for the purpose 
of assessing the progress of each participating national observatory development at the 
time of the study. In summation, the primary goals the study are 1) testing the data 
journey, 2) testing the user experience and usability of the H2O system, 3) collect 
preliminary evidence of the data’s value, and 4) assess the overall progress of the 
observatories. The findings from this study will help ensure that health data from multiple 
sources and disease areas can be collected and utilized efficiently, which is crucial for its 
usefulness in personalized treatments, population health, regulation, and more