Community Research and Development Information Service - CORDIS

H2020

iManageCancer Report Summary

Project ID: 643529
Funded under: H2020-EU.3.1.

Periodic Reporting for period 1 - iManageCancer (iManageCancer - Empowering patients and strengthening self-management in cancer diseases)

Reporting period: 2015-02-01 to 2016-01-31

Summary of the context and overall objectives of the project

Overview

iManageCancer, or ‘Empowering patients and strengthening self-management in cancer diseases’, will team serious games up with the latest in self-management technology to empower people living with cancer.

In this project, 8 partners from 5 European countries are creating intelligent, fun new ways to let those with chronic illnesses manage their lives in a new way, all from their mobile phones.

Significant improvements due to cancer research have led to more cancer patients being cured, and very many more enabled to live with their condition. The disease is now frequently managed as a chronic illness requiring long-term surveillance and, in some cases, maintenance treatment. As a chronic illness, however, there is an urgent need for patients and families to manage their own care.

The iManageCancer project will support this challenge and provide a cancer disease self-management platform designed according to the specific needs of patients and focusing on their wellbeing. The project is a recently launched European research activity to empower patients and strengthen their capability to manage their diseases through novel health apps and secure eHealth services.

Background

Cancer is the biggest and most costly health problem across the planet, and it continues to rise. In the UK alone, the number of people surviving or living with cancer is going up by 3.2% every single year*.

As it is a chronic condition, these people living with cancer increasingly need support with leading in their own treatment decisions, rehabilitation and self-care, both physical and mental.

iManageCancer hinges on the concept of patient empowerment, encouraging people with cancer to actively manage their disease through the support of an online service, accessed through tablets and mobile phones, which will help them to better understand their disease, the implications of the options they have available and give better wellbeing to them and their families.

It builds on the successes of a series of international research projects which have all developed computer-based tools for tackling cancer, either through benefitting patients directly over developing tools for cancer research. These include the MyHealthAvatar, p-medicine, d-LIVER and EURECA projects.

Objectives

The project has 13 key objectives it aims to fulfil, in order to deem itself a true success:

1). iManageCancer is looking to empower patients with cancer, and their families, by providing them with a service which allows them to self-manage their symptoms whatever stage in their care they are in.

2). It allows these patients to keep tabs on how they’re doing in terms of their general health or their cancer status, by keeping a diary of important notes such as side effects, which can be shared with their healthcare team.

3). Patients will be given personalised advice based on their situation and the information they provide, in a way that’s tailored to them helping them make the right decisions alongside their healthcare team.

4). Serious games will allow patients to look after their mental health by tackling issues such as depression and anxiety, helping them feel motivated, trained and staying on track.

5). Give guidance and support on decision-making on managing unpleasant side effects such as pain and fatigue by planning drug taking using expert information.

6). Give support to patients in managing their medications, as patients with cancer often have a wide array of drugs to juggle which treat different problems. An app will let them check for potential problems with taking certain drugs together, and let them know about possible side effects.

7). Let patients and their healthcare team keep track of their overall mental health, and receive advice and guides to looking after themselves.

8). Using predictive models in the service to work out when a patient might have a bad reaction to chemotherapy.

9). Encourage and support patients with cancer in following an active lifestyle, with wearable sensors such as activity and sleep trackers, which will feed back to the other apps.

10). Provide a service with simple, attractive mobile apps, with a health avatar guiding users around.

11). Create anonymous clinical information from the service, to help public health research.

12). Carry out three pilots of the service on patients with cancer: two for adults and one for children.

13). Work with stakeholders, such as cancer support organisations, involving them in the design and evaluation process and ensuring cancer patients drive the final version of the apps. Make the iManageCancer services available on the internet long after the end of the project.

* Maddams, J. Brewster, D., Gavin, A., Steward, J., Elliott, J., Utley, M., Møller, H. Cancer prevalence in the United Kingdom: estimates for 2008. British Journal of Cancer, 2009, 101 (3), 541-547.

Work performed from the beginning of the project to the end of the period covered by the report and main results achieved so far

In this first period, the project focused on the WP2 ‘Concept definition and system requirements’ and WP3 ‘System design and integration’ as well as on the software development for an initial vertical prototype of the iManageCancer platform.
The work performed in WP2 focused on the concept definition and system requirements for the proposed iManageCancer platform. Stakeholder interaction with patients, citizens and clinical care provider was implemented through an online survey as well as through dedicated, well-structured interviews with patients and doctors. Stakeholders’ perspectives regarding the design and functional priorities of the iManageCancer platform were incorporated in the design of the patient empowerment and self-management platform as well as in the development of a set of end-user scenarios.
The system architecture was elaborated in WP3 in order to address the aforementioned scenarios. To this end, the technical use cases and system requirements were derived forming the basis of the initial system architecture by WP3. Privacy aspects were taken into consideration in the proposed design of the system ensuring end-to-end security on all communication paths within the platform.
Subsequently, partners committed on the fast development of an initial vertical prototype that includes the main system components with rudimentary functionality but with implemented interfaces between them. To this end, it was decided to exploit pre-existing results from FP7 projects MyHealthAvatar and p-medicine for implementing the personal health record (PHR) of iManageCancer, adopting as much as possible open source solutions. As a result an initial responsive iManageCancer GUI was developed including individual web apps for an eDiary and appointments while we the MyHealthAvatar app is being adapted for iManageCancer.
Within WP5, the APIs for the integration of the care flow engine in the iManageCancer platform were designed and the initial backend of the tool was created. An initial set of knowledge models for self-management has been prepared for the central decision support and guidance system and the implementation work for the clinical decision support and management tools of WP5 has started. Significant progress was made in design and initial prototypes for the drug self-management tool, the decision model for the MASCC model for febrile neutropenia, the architecture of the Personal health information recommender and the design of the decision aid for consultation.
WP6 also started to develop assessment tools which could be used for patient’s psychological and physiological health monitoring. The main achievements consisted in drafting the Psycho-Emotional Monitoring tools and the Family Resilience Evaluation tool, and to prepare ethical committee protocols in order to proceed with validation studies for the tools.
Significant progress was made regarding the generic health enquiry tool, and a first care flow model was designed for the vertical prototype with a generic enquiry to capture the input data for the MASCC model. An initial version of mobile application ‘iManageMyDrugs’ that includes vital sign acquisition and health enquiries started being developed during the current reporting period.
In this period the game design for both serious games of the project was accomplished. The serious game for adults is a character management game while in the game for children kids fight cancer cells with the sup-port of their social network.
Critically, initial preparations took place to plan the project’s pilots at IOE and USAAR including interviews and discussions with patients and the clinical staff took place.
The project’s dissemination and communication plan was deployed and the management structure has been set up properly during this reporting period.

Progress beyond the state of the art and expected potential impact (including the socio-economic impact and the wider societal implications of the project so far)

The project will empower cancer patients and their relatives to better manage the cancer disease in all phases of the cancer care continuum in collaboration with their healthcare providers. The iManageCancer platform for self-management will inform the patients about their condition through personalised data driven information services and help them participate in the care process by sharing pain and side effect information with their doctor and keeping track and managing their therapy and health status. It will also alleviate the psychological burden by dedicated serious games for adult and young patients while the dedicated drug-drug interaction, psycho-emotional evaluation and clinician-patient communication services will reduce unnecessary visits to the hospital ensuring that serious deterioration of the disease will be assessed earlier detected or even prevented.
The iManageCancer platform aims to address effectively the limited interaction between the patient, his/her family and the clinician, caregiver. The ‘clinical view’ of the PHR will optimise these interactions while offering to the patients specific decision aids for the consultation process that will support them to participate more actively in clinical care process. iManageCancer will provide ICT based instruments to assess the psycho-emotional status of the patient and to evaluate the resilience in his family and support the integration of off-the-shelve sensors and medical devices that will allow assessing relevant vital signs and parameters related to lifestyle for further enhancing patient involvement and active participation in the therapy care process. Study protocols have been already developed to validate the psycho-emotional tools. The studies will consist in a pilot phase, which will assess the usability and the intelligibility of the tools. The items will be discussed with clinical staff, patients and family members. In the second phase, a validation study will assess the psychometric properties of the tools in cancer patients and their families, and provide national and European normative data.
The project will conduct and assess two pilots, one for adult cancer patients and one for children to assess the value of the iManageCancer platform and its services regarding feasibility, patient acceptance, usability, performance in terms of service delivery, reduce costs due to optimised patient-doctor communication, and effect on quality of life of cancer patients. These pilots in two diverse age groups of cancer patients will give critical evidence that is expected to pave the way for wider use and faster adoption of this technology in Europe.
The project will also contribute to novel business concepts and a model for health promotion in cancer patients that is centred on individualised service provision, which will be a novel service for more efficient disease self-management. iManageCancer will not only target on deploying and evaluating the pilots on cancer self-management but will also design and evaluate the whole process from the business/service stand-point, which will shed light on improved business concepts for participatory health management of cancer patients. The project engaged with healthcare stakeholders from the very beginning. Cancer charities have been identified as the most important stakeholders and potential providers of online-tools of such a platform. In consequence, links were established with Deutsche Krebshilfe, Deutsche Kinderkrebsstiftung and the Walsh charity Tenovus. Candidates for the external advisory panel were identified accordingly.

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