Periodic Reporting for period 1 - IMPROVE (Framework to IMPROVE the Integration of Patient Generated Health Data to Facilitate Value Based Healthcare)
Reporting period: 2023-12-01 to 2024-11-30
IMPROVE will use Patient Generated Health Data (PGHD) gathered via m-health and e-health technologies to gain improved insights into the real-life behavior of, and challenges faced by, patients of all ages with complex, chronic diseases and comorbidities. Already today, a wealth of patient and citizen information is available, but fragmented, and therefore not coming to its full utility and value. These personal data will complement and improve existing approaches for Patient-Centered Outcome Measures beyond those currently available in state-of-the-art platforms. The IMPROVE platform that the consortium will build will enable the smart use of patient input and patient generated evidence to 1) advance the role of patient preference and patient experience in the context of treatment selection, 2) improve medical device design based on patient preferences and experiences, and 3) facilitate faster market entry of patient-centric and cost-effective advanced integrated care solutions. Improved clinical adoption of Value Based Health Care, and enhanced return on research and innovation investments will be demonstrated in different care settings across the EU, for 10 use cases in at least 5 different disease areas (e.g. ophthalmology, oncology, cardiovascular disease, chronic inflammation, and neurology). The use cases will be conducted using a large variety of implementation strategies, building on a design thinking approach, to optimally test the innovative framework of data gathering and translation into controlled change and action. In addition, a significant contribution from implementation science is planned to reach out to all stakeholders that are relevant for this initiative and maximise the impact to IMPROVE healthcare provision.
During this first year the comprehensive understanding and challenges of the existing framework have been analysed following the experience of the WP5 pilot leaders and the technology providers that shared information related to standardized practice of data collection in health care settings, existing health data model resources and available standards. The initial findings considered PROMs as a well-established practice (also thanks to collaboration with the ICHOM-group and the inclusion of PROMs in clinical guidelines), meanwhile PREMs and PPI are poorly collected. This has been also confirmed by the systematic revision of scientific literature in the 5 topic areas (D2.1). An initial stakeholder analysis has been performed by WP6 jointly with WP3 to better understand the collection and use of PGHD in the real-world context (D6.4). WP6 worked on the requirements and developed an interview protocol that has been executed and will be reported at month 18.
WP3 defined a flexible architecture approach to systematically collect PHGD to assess a possible service / interventions or technology used in a specific medical domain (D3.1) the proposed approach integrates systematic research from medical literature that has been carried out by WP2 activities and it includes the extraction of data from scientific literature (D2.1) and existing practices (D2.2). The platform also provides standardized end points to collect retrospective and prospective data that will be used to collect retrospective data (WP4) and prospective studies (WP5). Final, the communication strategy has been initiated and developed (WP8) and several actions have been launched.
WP3 defined a flexible architecture approach to systematically collect PHGD to assess a possible service / interventions or technology used in a specific medical domain (D3.1) the proposed approach integrates systematic research from medical literature that has been carried out by WP2 activities and it includes the extraction of data from scientific literature (D2.1) and existing practices (D2.2). The platform also provides standardized end points to collect retrospective and prospective data that will be used to collect retrospective data (WP4) and prospective studies (WP5). Final, the communication strategy has been initiated and developed (WP8) and several actions have been launched.
Main results beyond the state of the art:
- Establish a project communication channel with partners (email, groupware tools) and external stakeholders (website, newsletter, social media posts).
- Protocol for stakeholder interviews to assess the use, adoption, analyses and implementation of PHGD.
- Definition of the IMPROVE architecture and Dashboard tools.
- Creation of screening and data extraction processes of scientific relevant literature for each use case defined in WP5 to ensure they build on the state of the art and go beyond.
- Established the IMPROVE Knowledge Warehouse with the state of the art coming from scientific literature.
- Established a database of all policies and practices on the use of PGHD in healthcare.
- Conducted the first Screenathon to co-create knowledge.
- Establish a project communication channel with partners (email, groupware tools) and external stakeholders (website, newsletter, social media posts).
- Protocol for stakeholder interviews to assess the use, adoption, analyses and implementation of PHGD.
- Definition of the IMPROVE architecture and Dashboard tools.
- Creation of screening and data extraction processes of scientific relevant literature for each use case defined in WP5 to ensure they build on the state of the art and go beyond.
- Established the IMPROVE Knowledge Warehouse with the state of the art coming from scientific literature.
- Established a database of all policies and practices on the use of PGHD in healthcare.
- Conducted the first Screenathon to co-create knowledge.