Background

Healthcare professionals, pharmacists, researchers, and health regulators across the EU generate and use a large volume of vital patient-related healthcare data. This aids them in maintaining a high quality of work. Nevertheless, significant obstacles remain in realizing the potential of digital health and patient-related data. To overcome these obstacles the EU has launched the European Health Data Space (EHDS) initiative. The EHDS is a sharing framework that establishes clear rules, common standards and practices, infrastructures and a governance framework on how electronic health data can be utilized by patients or for research, policy making, patient safety, statistics or regulatory purposes.

Project Content

In the IMPROVE project we seek to create a framework that not only makes patient-centred integrated healthcare solutions feasible but also highlights their benefits. We also plan to incorporate the framework in an online live platform in order to facilitate the development and implementation of integrated healthcare solutions on the basis of patient inputs. Preference information (PPI), patient-reported experience measures (PREMs), and patient-reported outcome measures (PROMs) are the primary, though not the only methods used to collect such inputs.

The platform will enable the smart use of patient input/data and accelerate the market entry of patient-centric, cost-effective advanced integrated care solutions, thereby increasing the return on investments made in research and innovation. A wealth of patient and citizen information already exists, but it is fragmented and thus underutilized. IMPROVE will remedy this problem by providing more comprehensive insights into patients' real-life behaviour. The insights gained can be then used to adjust interventions accordingly.

Goals

The most important goals of the IMPROVE-Project are:

• To identify shortcomings of existing frameworks (e.g., ICHOM, MyData, openEHR) for healthcare provision and to pay particular attention to how well they utilize patient-generated health data (PGHD) from non-clinical actors (such as patients, caregivers, healthcare providers and associations, public bodies/repositories, and industry).
• To co-design and deploy an open access framework (IMPROVE 1.0) that will allow for the inclusion of PGHD, new scientific evidence, and real-world data sources.
• To provide tools that will allow policymakers and researchers to develop and implement patient-centred solutions.
• To test and fine-tune IMPROVE on the basis of a variety of use cases, as well as to assess the accuracy of the framework’s predictions and its cost-effectiveness.
• To develop an IMPROVE implementation strategy and a sustainability plan and to provide a toolkit, including educational material and training guidance.

Method

IMPROVE builds on three overarching principles that can be circumscribed by the terms Ontology, Epistemology and Methodology. Ontology, in this context, involves inquiries and research into what already has been accomplished in the field of patient-generated health data. This lays the foundation for identifying strengths and weaknesses of existing tools and concepts. The focus of epistemology, on the other hand, is on how information is gathered and combined to create theoretical models in the field of patient-reported outcomes. Finally, methodology refers to plans, strategies, or designs that uncover how different methods or processes can be combined to achieve the desired outcomes.

Natural language processing (NLP) is used to identify, process, analyse and categorize secondary sources from the scientific and grey literature. Also, IMPROVE collects Real World Data (RWD) such as data from patients (e.g., IoT solutions, Apps) as well as health system information (e.g., EHR registries; digital biomarkers). Applying the IMPROVE Engagement Factors and Indicators Knowledge Graphs and Visualization tools to the collected data gives insight into influential factors affecting patient reported outcomes and makes it possible to visualize them. Lastly, the IMPROVE implementation toolkit, as well as educational materials and guidelines are made freely available. This aids policy and decision makers, healthcare professionals and researchers in adopting and utilizing the IMPROVE research outcomes. 

Result

IMPROVE is a ready-to-use framework that brings together fragmented patient-reported data and makes it available to a wide range of actors in the health care sector. The framework is constantly updated, improved and expanded based on the latest research outcomes. It is tailored to individual’s needs using PGHD and health system information (e.g., clinical information digital health date, digital biomarkers, EHR) and can be easily applied in a cost-effective manner to multiple treatment conditions in real-life settings.