Helping cancer patients to manage their cancer effectively
Over the last 20 years, personal health record systems have faced many challenges due to issues of trust, lack of interoperability, and limited usefulness to the patient. The EU-supported iManageCancer (Empowering patients and strengthening self-management in cancer diseases) project has developed a Personal Health Record system, (iPHR), to address these challenges. “The iPHR system empowers patients through self-management, allowing them to involve all stakeholders participating in their care, including family and informal carers if they choose,” explains the group manager for iManageCancer’s Intelligent Health Information Systems, Dr Stephan Kiefer. iPHR allows them to monitor their health in real time, better manage their treatment at home and, should they wish, share their information with healthcare professionals, informal carers and supporters for better-tailored care and outcomes. “As iPHR is open source, patients own their personal health record. Using their own iPHR, they can: search for personalised and verified information; use treatment decision tools; have the ability to record day to day experiences such as side effects and non-prescription medication; access tools for monitoring their psycho-emotional state; and note their environmental, lifestyle and dietary habits. All of these factors provide the patient with a complete overview of their health,” says Dr Kiefer. To make all this possible, the open source software of tools developed for patients includes nine applications: e-Diary, appointments, problems, medications, measurements, psycho-emotional monitoring, contact, documents repository, e-Consent and information recommender. Three other applications exist for clinicians: annotator, psycho-emotional profiler and smart analytics. The data gathered can also feed into clinical research. With the help of an e-consent tool, the administrator sends a request to patients with such profiles to support research by permitting their data to be used. If enough patients agree to this, the researcher is allowed to carry out specific analysis of this data in the platform. Much expertise has gone into the creation of the platform. The European Institute of Oncology, (IEO), a comprehensive cancer centre located in Milan, Italy, was responsible for the psycho-emotional tools, including family resilience and a decision aid for prostate cancer patients. The IEO also worked closely with breast and prostate cancer patients to validate the platform. The Department for Paediatric Oncology and Haematology, Saarland University Medical Center, was responsible for the concept of a game for children, and a clinical pilot with children with cancer. The Division of Cancer Studies at Kings College London (KCL) helped to develop predictive tools. Tenovus, a Welsh cancer charity providing mobile chemotherapy, working with eCANCER conducted end user workshops and remote testing with cancer patients throughout the development phase.
Keywords
iManageCancer, patient support, clinical insights, Personal Health Record system, cancer, carers
