*Liliana Laranjo, Ana Rita Pedro, Tiago Villanueva, Ana Luisa Neves, Paolo Sousa, Constantino Sakellarides
Portuguese School of Public Health
Oral Presentation – Practice Track
Sunday, Sept 30, 2012: 12:25 PM – 12:45 PM – LK130

*Presenting Speaker

Development of a Personal Health Record with a Diabetes Self-management Tool for Portuguese-speaking Patients

Health information technology has been experiencing significant developments in Portuguese primary health care centers and hospitals. However, electronic health records (EHRs), are usually only available to health care professionals. Patients, the co-owners of that health information, seldom have access to their own data. This can hamper the promotion of health literacy, patient empowerment and, consequently, the process of collaborative management. Additionally, patients’ health information is scattered through the EHRs of several institutions and health care professionals – a complete and comprehensive health record is currently inexistent in Portugal.

Personal Health Records (PHRs) may be seen as a way of filling these gaps. While a clear definition and taxonomy are still under discussion, their usage has been increasing worldwide, as patients assume a more active role in their health. Initially, they were mostly seen as mere patient-controlled data repositories but, nowadays, they generally combine data, knowledge and software tools, therefore becoming invaluable to help patients manage their health, between and during clinical consultations. Not surprisingly, patients with chronic diseases have been found to be amongst the early adopters of this new technology.

The first-ever PHR in Portugal has been freely available on the web since May 2010. Its development results from the continuous collaboration between the Portuguese School of Public Health and the largest Telecommunication and Information Technology Company in the country.

Patient-centered design was employed to guide the development process of this internet-based, personally controlled, health information system. Furthermore, the “Research-based web design and usability guidelines” were followed throughout the entire project and several usability tests took place during the iterative process.

Various functionality classes were implemented in this PHR: entering, finding, sharing, viewing and analyzing data; longitudinal health tracking (with charts and graphs); alerts (e.g., out-of-range values) and reminders (e.g., scheduled appointments); decision-making; communication; and customization (e.g., security features, preferences).

For now, data can only be self-entered by patients, although future perspectives for development include the transferability of information between EHRs and PHRs, as well as the input of data from monitoring devices. This platform was designed to cover the following types of data: personal information, family health information, problem list, diagnoses, procedures, lab/imaging results, immunizations, allergies, medications, nutrition/diet, exercise, health measurements (e.g. blood pressure, weight) and personal comments/remarks. Furthermore, evidence-based information/education resources are available online, as well as links to credible health information sources.

The development of modules/applications for chronic diseases is also an ambition of this project. The first to be designed was a self-management tool for type 2 diabetes, based on its high prevalence in Portugal. Special features of this module include automated feedback, goal setting, reminders for due exams (e.g. retinal screening), a cardiovascular risk calculator and disease-specific, evidence-based, contents for patient education.

Future perspectives for the project include further user-guided improvements on the platform, as well as the design of research studies to evaluate its performance. Research will also be conducted on the diabetes module of this PHR, to determine its potential value as a monitoring and self-management tool in type 2 diabetes.