Vasco Saavedra

Web-enabled registry of inherited bleeding disorders in Portugal: conditions and perception of the patients

Summary.  Local and national haemophilia registries are powerful instruments to support the healthcare and researchers and improve the communication between Comprehensive Haemophilia Diagnostic and Treatment Centres (HTCs) and patients. Hemo@care is an example of a Local Haemophilia Registry Systems (LHR_Sys) based on the Web, developed in collaboration with a HTC located in Portugal, to support the haemophilia treatments registry, collect and manage the clinical information and provide mechanisms to control the clotting factor concentrates (CFC) stock. To extend this solution (the hemo@care) to other Portuguese HTCs and consequently to meet the preconditions to create a National Haemophilia Registry Systems (NHR_Sys), a study based on a questionnaire was carried out at nationwide. This study aims to assess the conditions and motivations of people with haemophilia (PWH) geographically scattered throughout the country, to use a potential Web‐enabled registry with the purpose of replacing the traditional paper‐diaries, to understand their judgment about a potential NHR_Sys currently non‐existent in Portugal, and at the same time, to characterize demographically and pathologically those people at the nationwide. The results based on the analysis of 168 responses (response rate of 31%) confirmed the high prevalence of the disease in haemophilia A (75%) compared with haemophilia B (11.3%) and a large incidence in the severe levels, or the existence of people with mild severity without diagnosis and treatment. Furthermore, the results also revealed the need, conditions and motivation for using a registry system by PWH; thus it is deemed to justify the extension of the hemo@care to other HTCs in Portugal and consequently to create the NHR_Sys.

Requirements Engineering Using Mockups and Prototyping Tools: Developing a Healthcare Web-Application

Healthcare web-application development teams involve non-computer experts working (clinicians) on the requirements specification that is later processed by software engineers/analysts (conceptual model) and coded by software programmers (software project). The management of this process, which involves different levels of abstraction and professionals with different backgrounds, is often complex. As such, mediators and facilitator’s mechanisms for the requirements-gathering process and information transfer are needed. The main purpose of this work is to minimize the problems associated with this complex process, supporting the requirements engineering process of a healthcare web-application in a rapid prototyping model. The results proved that a rapid and functional prototyping model can improve the effectiveness of the requirement elicitation of any software development.

Using participatory design in a health information system

This article describes the experience of developing an interactive Health Information System (iHIS) currently under test in a hospital, which benefited from the practices of the User-Centred Design (UCD), in a Participatory Design (PD) approach. Techniques from the Human-Computer Interaction (HCI) and/or Usability Engineering (UE), combined with traditional Software Engineering (SE), allowed an effective and usable solution from the users point of view. The good results usually achieved with this approach were confirmed. Despite these good results, we deem that if there is not some control of the procedure by the project manager, it may be difficult to end the requirement analysis, since requirement reformulation is fostered.

Portuguese Haemophilia Registry. Set of variables for a computerized solution.

National Patient Registries (NPR) have an important role in the management of haemophilia and other inherited bleeding disorders, representing powerful instruments to support healthcare and research. Computer software to assist the NPR is crucial, as it facilitates the introduction of the data from a national universe that will be centralized and merged into a unique location, thus ensuring a greater reliability and accuracy of the collected data, avoiding duplication of patients. In Portugal, despite the efforts and recognition of the need of a NPR, just recently the protocol for the establishment of the computer software to support the Portuguese National Registry of Haemophilia and other Congenital Coagulopathies (PorR H&CC) was approved. This paper aims to present this newly developed computerized solution, as well as to report the main variables and information that will be available. The development of this application, which includes a set of socio-demographic, clinical and treatment data, was based on the principles of WFH, and the database that supports the NPR, with anonymized data, is operated and maintained in accordance with the Data Protection Law. Currently, the first data are available on the application. Our focus now is to ensure more registries and continuous data entry in order to have complete information on the characterization of the haemophilia patient population in Portugal.

A Preliminary Usability Evaluation of Hemo@Care: A Web-Based Application for Managing Clinical Information in Hemophilia Care

In this work, an overall description of the methods used and the results obtained in the on-going evaluation of hemo@care is presented. To help understanding the methods and results, we first give an overview of the main functionalities of hemo@care , which is a web application to manage the clinical information in hemophilia care, developed to be used by hematologists, nursing staff and patients suffering from hemophilia. Following we described the methods used in this particular evaluation, and finally we present the main results and general conclusions of these preliminary usability evaluation.

Improving the management of chronic diseases using web-based technologies: an application in hemophilia care

Modern methods of information and communication that use web technologies provide an opportunity to facilitate closer communication between patients and healthcare providers, allowing a joint management of chronic diseases. This paper describes a web-based technological solution to support the management of inherited bleeding disorders integrating, diffusing and archiving large sets of data relating to the clinical practice of hemophilia care, more specifically the clinical practice at the Hematology Service of Coimbra Hospital Center (a Hemophilia Treatment Center located in Portugal).

The User's Role in the Development Process of a Clinical Information System: An Example in Hemophilia Care

This work describes the development process of a Web-based Information System for managing clinical information in hemophilia care, emphasizing the role of the users around a human-centered development. To help understanding all this process, we first present the relevant concepts concerning human-centered design; next we describe the web application for managing the clinical information in hemophilia care, as well as, the development process followed in its development; and finally we illustrate the importance of the users involvement in critical phases through the demonstration of some results.

Web Platform to Support the Portuguese National Registry of Haemophilia and Other Inherited Blood Disorders

Patient registries are essential tools for identifying and tracking people with a particular disease and for collecting epidemiological information, having a special role in rare and chronic diseases, where haemophilia and other inherited blood disorders HoIBD are classified. Web-based technologies represent an excellent solution to support different types of registries, due to the benefits that they can promote in the management of disease data. This work presents the web platform developed in a joint initiative between the Portuguese Association of Congenital Coagulopathies PACC and the University of Aveiro UA, with the purpose of creating the first National Patients Registry NPR with HoIBD in Portugal. This application is hosted in the data centre of the UA, and at this moment it is already used by clinicians of the different Haemophilia Treatment Centres HTC located in Portugal, with the next challenge being the increase in the number of users.

National Patient Registry: A Web-based Technological Solution for Haemophilia in Portugal

Several national and international entities have recognized the importance of national patient registry systems, as well as their benefits in the treatment of chronic and rare diseases, such as haemophilia. Despite this recognition, due to the lack of motivation to invest in systems that benefit a small proportion of the population – characteristic of rare diseases – there are several barriers to create this type of application. This paper describes a Web-based solution to support the national haemophilia registry in Portugal, the first created in this country for this type of chronic and rare disease. Currently, the technological solution is already developed, tested, and installed at the data centre of a Portuguese University, and clinicians of different Haemophilia Treatment Center around the country have access to the operational version, via web.

Evaluation Methods to Support Health Information Systems Development: A Framework Supported in Literature and Practical Experience

Given the diversity and complexity of the Health Information Systems (HIS), and taking into account the impact of this type of systems in the clinical performance and patient outcome, a rigorous evaluation process in the system development life cycle (SDLC) is extremely important. An effective evaluation during development not only promotes the quality of the final solution, but also ensures motivated users, error-free systems, and can even establish good practices to minimize costs in future developments. However, the HIS evaluation is a difficult process due to the complex nature of the health care domain, the objects being evaluated, as well as the comprehensiveness of the concept of the evaluation itself. The present work intends to explore, based on a literature review, the main methods of HIS evaluation to support the development, identifying in which stage of the SDLC these methods can be applied. Additionally, this work discusses the reasons for the evaluation of such systems, illustrating these issues with two real case studies of HIS implementations, in which some of the methods were successfully applied.