Periodic Reporting for period 1 - CRANE (Comprehensive Treatment of Chronic Patients in Rural Areas)
Berichtszeitraum: 2021-06-01 bis 2022-09-30
The demographic challenge posed by an ageing population is more prominent in remote and rural regions than in urban areas.
Studies show that municipalities are vulnerable when more than 19,5 % of the population is + 65 years of age. Today more than 30% of the population is 65 years + in the selected areas in this project. Cities in the industrialised part of the world are expected to reach the same level in 20 years time.
CRANE project addresses the problem of chronic patients in rural areas. In some of our remote and rural municipalities, only the top 20% of the patients in KP1 pyramid can be guaranteed the full attention by social service and primary care entities. The remaining 70-80% need to be empowered to increase their self-control and self-management ability to protect their own health. This is of special relevance for patients with chronic diseases.
CRANE’s model will help change citizens self-conception from being patients to becoming citizens
The objectives of the European Health Data Space (EHDS) are the founding principles of CRANE and have been shaping the project since before the EHDS was published. The EHDS sets the regulatory and policy context and CRANE develops the infrastructure that makes it possible and puts it in the hands of European citizens.
CRANE plans to validate this infrastructure with a proof of concept where citizens in rural areas use their health data to improve the self-management of their chronic conditions. For this CRANE starts from a broad view of health: much personal data (e.g. the shopping list) is relevant as health data; and relevant stakeholders in patients’ health go beyond healthcare and social care systems, and family/carers (e.g. the gym or the municipality). The most important challenges that CRANE faces are generating trust, creating a positive user experience, and fostering responsibility and consciousness in users regarding personal data management. To do this, the project must combine:
• a very complex technological foundation that safeguards the privacy and security of citizens' data while ensuring its availability for legitimate use.
• a substantiated informed consent and a responsible use of their personal data by citizens with varying levels of digital literacy.
CRANE builds thus on two pillars:
• Healthcare from home powered by a large diversity of personal data and trend technologies.
• An ecosystem for well-being to help motivate patients and engage a large community of support, creating a garden of care.
Furthermore, CRANE includes a value-based model to ensure its long-term sustainability.
Studies show that municipalities are vulnerable when more than 19,5 % of the population is + 65 years of age. Today more than 30% of the population is 65 years + in the selected areas in this project. Cities in the industrialised part of the world are expected to reach the same level in 20 years time.
CRANE project addresses the problem of chronic patients in rural areas. In some of our remote and rural municipalities, only the top 20% of the patients in KP1 pyramid can be guaranteed the full attention by social service and primary care entities. The remaining 70-80% need to be empowered to increase their self-control and self-management ability to protect their own health. This is of special relevance for patients with chronic diseases.
CRANE’s model will help change citizens self-conception from being patients to becoming citizens
The objectives of the European Health Data Space (EHDS) are the founding principles of CRANE and have been shaping the project since before the EHDS was published. The EHDS sets the regulatory and policy context and CRANE develops the infrastructure that makes it possible and puts it in the hands of European citizens.
CRANE plans to validate this infrastructure with a proof of concept where citizens in rural areas use their health data to improve the self-management of their chronic conditions. For this CRANE starts from a broad view of health: much personal data (e.g. the shopping list) is relevant as health data; and relevant stakeholders in patients’ health go beyond healthcare and social care systems, and family/carers (e.g. the gym or the municipality). The most important challenges that CRANE faces are generating trust, creating a positive user experience, and fostering responsibility and consciousness in users regarding personal data management. To do this, the project must combine:
• a very complex technological foundation that safeguards the privacy and security of citizens' data while ensuring its availability for legitimate use.
• a substantiated informed consent and a responsible use of their personal data by citizens with varying levels of digital literacy.
CRANE builds thus on two pillars:
• Healthcare from home powered by a large diversity of personal data and trend technologies.
• An ecosystem for well-being to help motivate patients and engage a large community of support, creating a garden of care.
Furthermore, CRANE includes a value-based model to ensure its long-term sustainability.
CRANE will develop a technological infrastructure that allows easy compliance with GDPR, affords end-to-end state-of-the-art data protection, mitigates data breaches, and empowers data holders to retain control and transparency; an infrastructure that is based on user-driven design, stimulating uptake and awareness of privacy principles and data use, and affording organizational interoperability. CRANE understand that data will continue to be stored where data are generated, but CRANE will demonstrate how to unlock this data and make it available to individuals.
The infrastructure developed by CRANE is the basis for a large ecosystem of developers that creates a virtuous cycle where new insights are generated through access to wider and more diverse data pools, and where these insights in turn become valuable data sources. It will be a novel framework for interoperable data sharing for value-based self-management
CRANE will hide all the underlying complexity from citizens, providing a powerful but easy to use app, MyHealthEnabler, that will allow citizens to access their health data at any moment, gaining insight and empowerment, and access to activities appropriate to those insights from the large health supporting network.
CRANE plans to purchase the research, development and validation of the CRANE infrastructure.
CRANE infrastructure will be validated with a proof of concept where citizens in rural areas use their health data to improve the self-management of their chronic conditions.
During the preparation phase of the CRANE PCP, the tender documents describing this challenge have been elaborated and published.
The infrastructure developed by CRANE is the basis for a large ecosystem of developers that creates a virtuous cycle where new insights are generated through access to wider and more diverse data pools, and where these insights in turn become valuable data sources. It will be a novel framework for interoperable data sharing for value-based self-management
CRANE will hide all the underlying complexity from citizens, providing a powerful but easy to use app, MyHealthEnabler, that will allow citizens to access their health data at any moment, gaining insight and empowerment, and access to activities appropriate to those insights from the large health supporting network.
CRANE plans to purchase the research, development and validation of the CRANE infrastructure.
CRANE infrastructure will be validated with a proof of concept where citizens in rural areas use their health data to improve the self-management of their chronic conditions.
During the preparation phase of the CRANE PCP, the tender documents describing this challenge have been elaborated and published.
CRANE will move beyond the state of the art by:
1. Requesting an ethical and legal path for combining health data based on individual consent using a 3rd party trusted party/ies that can represent the patient
2. Suggesting a governance structure that ensures transparent use and exchange of health data while preserving privacy.
3. Being able to offer different access channels for the most efficient use of new types of health related data and determine the potential for evidence based personalized intervention prevention and treatment.
4. Being able to develop new insights, improve the clinical and health economic value of improved access to health related data and publish these insights in the scientific literature.
For this, CRANE will run a competition in three phases (design, prototyping, validation), starting with 5 competitors and ending with 2, which will implement a complete validation phase which will allow measuring performance indicators and creating the bases for further scale-up of CRANE model.
The CRANE solution will enable procurers to provide better health and care for patients with chronic diseases with a special focus on:
• Radical improvement of the hospital discharge processes and other care transitions.
• Profound increase of collaboration efficiency and improvement of patient experiences of the care system.
• Tailored provision of secondary prevention measures.
• Digitally enabled real patient-empowerment and self-management support.
• Innovative performance monitoring, including for example new ways of PREMs and PROMs collection.
As most services can also contribute to integrated care service delivery to people living with other chronic conditions, CRANE welcomes, in line with procurer interests and market demand, suppliers with an integrated care solution easily adaptable to conditions also prioritised by the procurers such as respiratory, metabolic, other cardiovascular conditions, or cancer. Furthermore, it is of value to CRANE procurers that the new platform will be reusable for a more integrated management of other prevalent resource-consuming long-term conditions, such as dementia or frailty. The CRANE solution can work as supporting system, not necessarily needed to be seamlessly integrated into existing ICT systems, but can contribute to support processes and working practices and must enable better dataflow within the Health and Social care systems.
1. Requesting an ethical and legal path for combining health data based on individual consent using a 3rd party trusted party/ies that can represent the patient
2. Suggesting a governance structure that ensures transparent use and exchange of health data while preserving privacy.
3. Being able to offer different access channels for the most efficient use of new types of health related data and determine the potential for evidence based personalized intervention prevention and treatment.
4. Being able to develop new insights, improve the clinical and health economic value of improved access to health related data and publish these insights in the scientific literature.
For this, CRANE will run a competition in three phases (design, prototyping, validation), starting with 5 competitors and ending with 2, which will implement a complete validation phase which will allow measuring performance indicators and creating the bases for further scale-up of CRANE model.
The CRANE solution will enable procurers to provide better health and care for patients with chronic diseases with a special focus on:
• Radical improvement of the hospital discharge processes and other care transitions.
• Profound increase of collaboration efficiency and improvement of patient experiences of the care system.
• Tailored provision of secondary prevention measures.
• Digitally enabled real patient-empowerment and self-management support.
• Innovative performance monitoring, including for example new ways of PREMs and PROMs collection.
As most services can also contribute to integrated care service delivery to people living with other chronic conditions, CRANE welcomes, in line with procurer interests and market demand, suppliers with an integrated care solution easily adaptable to conditions also prioritised by the procurers such as respiratory, metabolic, other cardiovascular conditions, or cancer. Furthermore, it is of value to CRANE procurers that the new platform will be reusable for a more integrated management of other prevalent resource-consuming long-term conditions, such as dementia or frailty. The CRANE solution can work as supporting system, not necessarily needed to be seamlessly integrated into existing ICT systems, but can contribute to support processes and working practices and must enable better dataflow within the Health and Social care systems.