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 iManageCancer Personal Health Record system, (iPHR), has been developed to address these challenges. The system helps empower patients through self-management, allowing them to involve all stakeholders involved in their care including family and informal carers if they choose.
With iPHR patients can monitor their health in real time, better manage their treatment at home, and choose to share their data with their 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; as well as tools for psycho-emotional monitoring; environmental, lifestyle and dietary habits providing the patient with a complete overview of their health.
The open source software of tools developed for iPHR include nine applications created for patients (e-Diary, Appointments, problems, medications, measurements, psycho-emotional monitoring, contact, documents repository, e-Consent and information recommender) and three applications for clinicians (annotator for the information recommender, psycho-emotional profiler and smart analytics):
- E-Diary application, an overview of all the iPHR data organised in a calendar supporting day views, month views, year views and timeline views.
- Appointments application provides a list of the appointments of the patient. Each appointment entry has a map for inserting the appointment’s address and the patient can create an alert, which will be visible in the iPHR.
- Problems application helps the patient to view and update diseases, illnesses, injuries, physiological, psychological conditions or disorders. Chronic diseases are not visible in the iPHR.
- Medications application includes a list of drugs or other substances received, also chronic medications are not visible in the iPHR in order to avoid negative psychological effects.
- Measurements application provides the option to the patient to view and update vital signs that indicate the status of the body’s vital functions. A graph view is available for each vital sign in order to provide evolution of each vital sign based on time.
- Documents repository consists of patient’s health documents such as images or text documents.
- Psycho-emotional status monitoring application (available only in Italian) uses standardized psycho-behavioural questionnaires to detect the cognitive–psychological profile of users in order to allow a better fitting between the clinician and the patient. The system also supports the psycho-emotional profiler for the clinician(s) to view and evaluate the results.
- Contact application provides a form to the users in order to help them to communicate with each other inside the iPHR platform through emails.
- e-Consent tool that allows an iPHR account to use the anonymized data of a patient cohort. Those patients will become part of that cohort who have given consent to the use of their data for this specific research project. These are the patients that gave general consent to donate their data for research, plus those patients that give consent to provide their data for this specific research project (request and accepted consent via email).
- Personal Health Information Recommender enable patients to find higher quality (rather than searching the Internet) and more relevant information and better discern between the different sources of knowledge with respect to quality and relevance. The sources are provided by the healthcare experts using the annotator.
- Smart analytics that provide an end-to-end solution for non-IT users to analyse and understand the data collected from the iPHR tools.
In each of the applications the patient can insert, modify, delete or share his information. Furthermore, the patient can export his health information from his/her personal health record to a local drive by selecting which information to export.
These components are available open source for developers wishing to apply them to various domains within biomedical informatics, at the following public repository:
iPHR Server: https://github.com/Chatzimina/indivo_server