RESUMO
Patient-reported outcomes (PROs) are an emerging paradigm in clinical research and healthcare, aiming to capture the patient's self-assessed health status in order to gauge efficacy of treatment from their perspective. As these patient-generated health data provide insights into the effects of healthcare processes in real-life settings beyond the clinical setting, they can also be viewed as a resolution beyond what can be gleaned directly by the clinician. To this end, patients are identified as a key stakeholder of the healthcare decision making process, instead of passively following their doctor's guidance. As this joint decision-making process requires constant and high-quality communication between the patient and his/her healthcare providers, novel methodologies and tools have been proposed to promote richer and preemptive communication to facilitate earlier recognition of potential complications. To this end, as PROs can be used to quantify the patient impact (especially important for chronic conditions such as cancer), they can play a prominent role in providing patient-centric care. In this paper, we introduce the MyPal platform that aims to support adults suffering from hematologic malignancies, focusing on the technical design and highlighting the respective challenges. MyPal is a Horizon 2020 European project aiming to support palliative care for cancer patients via the electronic PROs (ePROs) paradigm, building upon modern eHealth technologies. To this end, MyPal project evaluate the proposed eHealth intervention via clinical studies and assess its potential impact on the provided palliative care. More specifically, MyPal platform provides specialized applications supporting the regular answering of well-defined and standardized questionnaires, spontaneous symptoms reporting, educational material provision, notifications etc. The presented platform has been validated by end-users and is currently in the phase of pilot testing in a clinical study to evaluate its feasibility and its potential impact on the quality of life of palliative care patients with hematologic malignancies.
RESUMO
Information in the healthcare domain and in particular personal health record information is heterogeneous by nature. Clinical, lifestyle, environmental data and personal preferences are stored and managed within such platforms. As a result, significant information from such diverse data is difficult to be delivered, especially to non-IT users like patients, physicians or managers. Another issue related to the management and analysis is the volume, which increases more and more making the need for efficient data visualization and analysis methods mandatory. The objective of this work is to present the architectural design for seamless integration and intelligent analysis of distributed and heterogeneous clinical information in the PHR context, as a result of a requirements elicitation process in iManageCancer project. This systemic approach aims to assist health-care professionals to orient themselves in the disperse information space and enhance their decision-making capabilities, to encourage patients to have an active role by managing their health information and interacting with health-care professionals.
