Pacientes em rede: aspectos inovadores na plataforma PatientsLikeMe

O artigo busca apontar o novo papel desempenhado por pacientes na discussão de aspectos pessoais de saúde no ambiente digital. As inovações oferecidas pela plataforma PatientsLikeMe criam um ambiente onde pacientes, cuidadores e profissionais de saúde dividem dúvidas, sugestões e queixas que, trabalhadas de forma qualitativa, geram informações para pesquisadores do segmento médico e empresas farmacêuticas. A pesquisa mapeou a produção científica a partir da busca pela palavra-chave “Patientslikeme” e discute não apenas os aspectos inovadores da plataforma, mas também os interesses segmentados e desafios a vencer no novo locus comunicacional.

Impact of the social networking applications for health information management for patients and physicians

Most social network users hold more than one social network account and utilize them in different ways depending on the digital context. For example, friendly chat on Facebook, professional discussion on LinkedIn, and health information exchange on PatientsLikeMe. Thus many web users need to manage many disparate profiles across many distributed online sources. Maintaining these profiles is cumbersome, time consuming, inefficient, and leads to lost opportunity. In this paper we propose a framework for multiple profile management of online social networks and showcase a demonstrator utilising an open source platform. The result of the research enables a user to create and manage an integrated profile and share/synchronise their profiles with their social networks. A number of use cases were created to capture the functional requirements and describe the interactions between users and the online services. An innovative application of this project is in public health informatics. We utilize the prototype to examine how the framework can benefit patients and physicians. The framework can greatly enhance health information management for patients and more importantly offer a more comprehensive personal health overview of patients to physicians.

Quantifying short-term dynamics of Parkinson's disease using self-reported symptom data from an internet social network

Background: Parkinson’s disease (PD) is an incurable neurological disease with approximately 0.3% prevalence. The hallmark symptom is gradual movement deterioration. Current scientific consensus about disease progression holds that symptoms will worsen smoothly over time unless treated. Accurate information about symptom dynamics is of critical importance to patients, caregivers, and the scientific community for the design of new treatments, clinical decision making, and individual disease management. Long-term studies characterize the typical time course of the disease as an early linear progression gradually reaching a plateau in later stages. However, symptom dynamics over durations of days to weeks remains unquantified. Currently, there is a scarcity of objective clinical information about symptom dynamics at intervals shorter than 3 months stretching over several years, but Internet-based patient self-report platforms may change this. Objective: To assess the clinical value of online self-reported PD symptom data recorded by users of the health-focused Internet social research platform PatientsLikeMe (PLM), in which patients quantify their symptoms on a regular basis on a subset of the Unified Parkinson’s Disease Ratings Scale (UPDRS). By analyzing this data, we aim for a scientific window on the nature of symptom dynamics for assessment intervals shorter than 3 months over durations of several years. Methods: Online self-reported data was validated against the gold standard Parkinson’s Disease Data and Organizing Center (PD-DOC) database, containing clinical symptom data at intervals greater than 3 months. The data were compared visually using quantile-quantile plots, and numerically using the Kolmogorov-Smirnov test. By using a simple piecewise linear trend estimation algorithm, the PLM data was smoothed to separate random fluctuations from continuous symptom dynamics. Subtracting the trends from the original data revealed random fluctuations in symptom severity. The average magnitude of fluctuations versus time since diagnosis was modeled by using a gamma generalized linear model. Results: Distributions of ages at diagnosis and UPDRS in the PLM and PD-DOC databases were broadly consistent. The PLM patients were systematically younger than the PD-DOC patients and showed increased symptom severity in the PD off state. The average fluctuation in symptoms (UPDRS Parts I and II) was 2.6 points at the time of diagnosis, rising to 5.9 points 16 years after diagnosis. This fluctuation exceeds the estimated minimal and moderate clinically important differences, respectively. Not all patients conformed to the current clinical picture of gradual, smooth changes: many patients had regimes where symptom severity varied in an unpredictable manner, or underwent large rapid changes in an otherwise more stable progression. Conclusions: This information about short-term PD symptom dynamics contributes new scientific understanding about the disease progression, currently very costly to obtain without self-administered Internet-based reporting. This understanding should have implications for the optimization of clinical trials into new treatments and for the choice of treatment decision timescales.