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iManageCancer - Empowering patients and strengthening self-management in cancer diseases

Periodic Reporting for period 3 - iManageCancer (iManageCancer - Empowering patients and strengthening self-management in cancer diseases)

Reporting period: 2017-08-01 to 2018-07-31

iManageCancer teams 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 supports this challenge and provides a cancer disease self-management platform designed according to the specific needs of patients and focusing on their wellbeing. iManageCancer hinges on the concept of patient empowerment, encouraging people with cancer to actively manage their disease through novel health apps and secure eHealth services, which actively help them to better understand their disease, the implications of the options they have available and give better wellbeing to them and their families.
The first year of the project focused on the definition of the concept for cancer patient empowerment and on the design of the iManageCancer Platform. Then, the efforts in the following 18 months concentrated on the development of the various technological tools planned and their integration in a holistic platform. Software development was driven by a close involvement of end users, in particular patients, through various activities. An initial prototype of the iManageCancer Platform offering basic functionality was delivered in December 2016 followed by a first formal end user workshop, achieving an important milestone (MS2) with this activity. The extended version of the integrated platform became available on July 2017 and was tested by 10 patients at home over a week.
The iManageCancer Platform consists of the applications iPHR, MyHealthAvatar for iManageCancer, iManageMyHealth, iSupportMyPatients as well as the Game for Kids and the Game for Adults. They are all connected to a backbone of services comprising of a semantic data store, the Care Flow Engine with the Model Repository, and an authentication service.
iPHR, an open source personal health record available online, enables an individual to manage and share a digital copy of his/her health and contains a variety of applications, such as an e-diary, novel psycho-emotional health assessment instruments, a personal health information recommender, and a decision aid for prostate cancer patients.
MyHealthAvatar for iManageCancer supports patients with cancer to optimize their lifestyle and to recover from cancer treatment, through an integrated digital representation of the personal health status.
The iManageMyHealth app supports users in managing their drugs and their interactions. It assists in managing and understanding paper based health documents, and in recording and overviewing specific vital signs and laboratory parameters. Specific management services of the Care Flow Engine, record pain and fatigue and offer advices and links to public information resources.
iSupportMyPatients is an informative app intended for physicians. This app offers to health professionals access to the disease management services of the Care Flow Engine. It includes monitoring serious side effects of chemotherapies, leveraging a predictive risk model for febrile neutropenia, and obtaining advice regarding the optimal therapy. This prognostic model, implementing a pre-treatment model, resulted from machine learning research in the project on existing cancer data from chemotherapy patients in the.
The Serious Game for Adults promotes a healthier lifestyle, disease management and encourages patients to manage their disease. The game puts the users in the role of an authority figure who manages a town, trying to balance residents’ resources and time to face cancer related lifestyle problems.
The Serious Game for Kids is a classical shooter game on cancer cells with strong social aspects. It can also be played by family members and friends to give the child support in form of extra weapons and shields to fight the cancer.
The project conducted three pilots, one for adult breast cancer patients, one for prostate cancer patients, and one for cancer suffering children and their parents to assess the value of the iManageCancer Platform. The pilot for kids managed to recruit 15 parents and their children whereas the pilots for adults managed to recruit 135 patients. Results showed mixed evidences on the improvements for the patient empowerment due to lack of time and treatment induced stress and psychological problems. Nevertheless coping with cancer, mood and cancer resilience were improved for the trial arm using the platform. In addition, users recognized the usability and the usefulness of the developed platform. With these results, the final milestone (MS4) of the project is achieved.
Project results attracted more than 75K visitors in the YouTube channel, more than 150K visitors per month, a special issue in a well-respected journal and 42 peer-reviewed scientific papers and articles whereas project results disseminated widely through multiple marketing campaigns. Finally multiple exploitation routes were explored for the 14 exploitable technological innovations identified both academic and commercial.
The project empowers 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 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 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 reduce unnecessary visits to the hospital ensuring that serious deterioration of the disease will be assessed earlier detected or even prevented. The iManageCancer platform addressed effectively the limited interaction between the patient, his/her family and the clinician, caregiver. The ‘clinical view’ of the iPHR optimises 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 provides 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 allows assessing relevant vital signs and parameters related to lifestyle for further enhancing patient involvement and active participation in the therapy care process. A validation study assessed the psychometric properties of the tools in cancer patients and their families. The tools were incorporated in the iPHR, progressing as such beyond the state of the art in patient empowerment thought a novel personal health environment.