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INTEGRATED PERSONALIZED CARE FOR PATIENTS WITH ADVANCED CHRONIC DISEASES TO IMPROVE HEALTH AND QUALITY OF LIFE

Periodic Reporting for period 1 - ADLIFE (INTEGRATED PERSONALIZED CARE FOR PATIENTS WITH ADVANCED CHRONIC DISEASES TO IMPROVE HEALTH AND QUALITY OF LIFE)

Reporting period: 2020-01-01 to 2021-08-31

Due to the aging of the population and advances in medical science, people with chronic diseases – even those with advanced severe life-threatening chronic diseases - are living longer. This has created new challenges: sustaining quality of life and independent living, providing support for caregivers who are shouldering an increasing burden, and creating sustainable healthcare and social care systems in the face of increasing demands and limited resources. Integrated care has been proposed as the key approach to meet these challenges.
The impact of digitalisation of health services is expected to be profound but it is important to evaluate their impact . ADLIFE aims to provide evidence to support decisions to adopt, use or reimburse new digital health services supporting integrated care at different levels of the health care system.

ADLIFE aims to improve the health situation of patients with Advanced Chronic Diseases, by means of the use of an innovative digital solution (ADLIFE toolbox) providing a coordinated, dynamic, personalized, integrated and outcome-based care targeting the empowerment of patients and caregivers and early detection.

The digitally enabled operational objectives are:
To provide collaborative tools to create personalized care plans for multidisciplinary care team members to efficiently manage the delivery of integrated care services improving working conditions of health care and social care providers, optimizing work time management and multi-disciplinary coordination.
To implement intelligent tools for clinical decision-making support that seamlessly access and assess the most recent patient’s clinical context (EHR and PROMs), by automating evidence-based guidelines and need assessments scales and risk prediction algorithms to early detect health changes or undesired events.
To securely access, process, share and store patient’s data in electronic health records and also other patient generated data (including sensor measurements, interactions with their environments, feedback about their care plans and PROMs) in line with the requirements of GDPR.
To change the traditional care models for chronic patients with advanced chronic disease by integrating unconnected care tasks performed in different levels and settings addressing the multidimensional nature of their conditions and the secure and quality exchange of data and information.
To facilitate a more active role of patients and caregivers in managing their own health and symptoms encouraging shared decision making, deliver individualized adaptive interventions.

ADLIFE will provide intelligent mechanisms to deliver personalized self-management support through adaptive interventions. Being that the advanced chronic disease target group is one of the most complex and demanding ones, solutions that can be demonstrated effective and efficient and sustainable for them can be easily be extended to other patient groups. ADLIFE is grounded on the principle of self-determination and respect for autonomy, respecting different preferences for intervention and self-management.
The ADLIFE Kick Off Meeting was held in Bilbao, on January, 21st and 22nd. We had lively and fruitful sessions and discussions. All partners attended and were very active. We reviewed and analyzed the DoA, identified the main challenges and organized the detailed action plan for the first few months of the Project.

Crisis of COVID-19 pandemic on March 2020 affected worldwide, collapsed health services and impacted dramatically in the project. An amendment to the GA, Annex 1 Description of the Action (DOA), part A and B was prepared and approved by the EC in December 2020 (Reference no. AMD-875209-9). This amendment requested for a of six months extension to the overall project duration. This extension was not distributed equally across all Work Packages, but was applied to each Task according to a preliminary analysis that looked at the direct impact of the pandemic on the specific activities and contingency plans. Due to the contingency plan and subsequent amendment to the DOA we have achieved adapting procedures and continuing with the research Project. In line with the AMD-875209-9, the deliverables due by the first periodic report have been submitted and achieved on time. Main results achieved so far are:
D1.1. Data management plan (submitted on June 2020)
D2.1 Communication and dissemination plan and Communication material (submitted by June 2020)
D2.2 Website (submitted by March 2020)
D3.1 ADLIFE software requirement and architectural description (submitted by Feb 2021)
D7.1 ADLIFE Patient reported Outcomes Measures (submitted by January 2021)
D7.2 Patient Empowerment Materials and Intervention (submitted by July 2021)
D7.3 Shared decision making tool Requirements M19 (submitted by July 2021)
D10.1 Exploitation plan (submitted in June 2020)
D11.1 H - Requirement No. 1 (submitted by April 2021)
D11.2 POPD – Requirement No. 8 (submitted by March 20211)
D11.3 POPD – Requirement No. 9 (submitted by March 2021.

Since COVID-19 pandemic outbreak in March 2020, all travels stopped and the consortium has met online since then. During the first Periodic Report, two virtual Plenary Meetings have taken place, apart from the Kick-off meeting:1st Plenary Meeting (20-21/10/2020) and 2nd Plenary Meeting (4-5/05/2021). 3rd Pleanry meeting has been scheduled by November 16 and 17, 2021. Due to the uncertainty, the consortium agreed a virtual meeting.
ADLIFE will provide the evidence that intelligent, collaborative digital solutions can enable care teams, patients and caregivers to improve or better maintain health in patients with advanced chronic disease: avoid unnecessary deterioration, extend their independence and optimize health resource utilization (avoid unnecessary treatments, improve care at home and reduce hospital admissions). This project will demonstrate significant outcomes-based efficiency gains in health and care delivery, enhancing seamless care coordination and avoiding gaps and overlaps in care through large scale clinical care pilots and rigorous evaluation.
Its impact will be reflected in improved coverage, ensured earlier detection and multi-needs assessment and will provide high quality, effective and continued symptom management through evidence-based digital personalized care plans. The evindece will be build up from:
The deployment of the new tools in 75 hospitals/clinics/primary care centres in seven different European and associated regions, involving 577 professionals.
The assessment of the effectiveness and efficiency of the intervention with a large-scale pilot involving 884 patients and 1243 caregivers, evaluating health gain, quality of life, use of resources and economic costs (WP9)
Contacting/including more than 102,900 professionals and 2,128 centres in the participating regions where more than 190,000 patients could benefit in a short-term with the project results.
Producin guidelines and policy recommendations providing financial sustainable, flexible and replicable solutions to disseminate results, transfer and deploy at large-scale to other patient groups in the EU and beyond and create further business and job creation opportunities.
Kick-off meeting, Bilbao, JAN 21-22 , 2020