Journal of Medical Internet Research

Systemic lupus erythematosus (SLE) is a multisystem autoimmune disease. It is characterized by a broad spectrum of manifestations, depending on the affected organs and the severity of the inflammation at the time of presentation. Despite improvements in management, treatments are required on a chronic, cyclical basis; have high potential for unpleasant side effects; and deliver variable efficacy. Patients require care from multiple specialists, which can be delivered simultaneously and sporadically. Our fragmented health care system further exacerbates the disconnect between intermittent medical care and the lived experiences of patients with SLE. The goals of this research are to (1) assess the current standard of care for patients with SLE through the review of medical literature, including clinical consensus guidelines and systematic reviews; (2) assess the lived experiences of patients with lupus through the review of peer-reviewed literature on social listening, structured interviews, and data available from the open-access digital health platform PatientsLikeMe; and (3) present the perspective that the medical community has an opportunity to acknowledge and review the use of digital health interventions (DHIs) with their patients. The results of this research indicate that patients are incorporating DHIs, such as the internet and social media platforms, as critical components of their care for even the most basic of support. Although patients with SLE are depending on this support to shape their care, it is not considered a primary source of care by clinicians. Integrating the voices of patients brings valuable dimension to understanding the lived experiences of patients with SLE and the impacts of mutually dependent patient needs as patients navigate the disease in daily life. The medical community has a meaningful opportunity to leverage and recommend existing DHIs, such as web-based community platforms and web-based patient registries, at every stage of the patient journey to help patients better manage their condition. This has the potential to proactively build patient trust and well-being, reduce the underreporting of symptoms, increase shared decision-making, inform and shape clinical guidelines and future research, and improve patient outcomes.

Telehealth seems feasible for use in home-based palliative care (HBPC). It may improve access to health care professionals (HCPs) at patients’ homes, reduce hospital admissions, enhance patients’ feelings of security and safety, and increase the time spent at home for patients in HBPC. HBPC requires the involvement of various HCPs such as nurses, physicians, allied health professionals, dietitians, psychologists, religious counselors, and social workers. Acceptance of the use of technology among HCPs is essential for the successful delivery of telehealth in practice. No scoping review has mapped the experiences and perspectives of HCPs regarding the use of telehealth in HBPC.

Regular medical care is important for people living with HIV. A no-show predictive model among people with HIV could improve clinical care by allowing providers to proactively engage patients at high risk of missing appointments. Epic, a major provider of electronic medical record systems, created a model that predicts a patient’s probability of being a no-show for an outpatient health care appointment; however, this model has not been externally validated in people with HIV.

Cardiac rehabilitation is a class IA recommendation for patients with cardiovascular diseases. Physical activity is the core component and core competency of a cardiac rehabilitation program. However, many patients with cardiovascular diseases are failing to meet cardiac rehabilitation guidelines that recommend moderate-to-vigorous intensity physical activity.

COVID-19 vaccines remain central to the UK government’s plan for tackling the COVID-19 pandemic. Average uptake of 3 doses in the United Kingdom stood at 66.7% as of March 2022; however, this rate varies across localities. Understanding the views of groups who have low vaccine uptake is crucial to guide efforts to improve vaccine uptake.

The current health status of the general public can substantially benefit from a healthy diet. Using a personalized approach to initiate healthy dietary behavior seems to be a promising strategy, as individuals differ in terms of health status, subsequent dietary needs, and their desired behavior change support. However, providing personalized advice to a wide audience over a long period is very labor-intensive. This bottleneck can possibly be overcome by digitalizing the process of creating and providing personalized advice. An increasing number of personalized advice systems for different purposes is becoming available in the market, ranging from systems providing advice about just a single parameter to very complex systems that include many variables characterizing each individual situation. Scientific background is often lacking in these systems. In designing a personalized nutrition advice system, many design questions need to be answered, ranging from the required input parameters and accurate measurement methods (sense), type of modeling techniques to be used (reason), and modality in which the personalized advice is provided (act). We have addressed these topics in this viewpoint paper, and we have demonstrated the feasibility of setting up an infrastructure for providing personalized dietary advice based on the experience of 2 practical applications in a real-life setting.

Telehealth has been increasingly adopted by health care systems since the start of the COVID-19 pandemic. Although telehealth may provide convenience for patients and clinicians, there are several barriers to accessing it and using it effectively to provide high-quality patient care.

In recent years, tasks have shifted from specialized hospital care to primary care, leading to both advantages and challenges for general practitioners (GPs). A frequently mentioned tool to face these challenges is e-consultation, a form of asynchronous digital interprofessional communication between GPs and hospital specialists.

Psoriasis (PsO) is a chronic, systemic, immune-mediated disease with multiorgan involvement. Psoriatic arthritis (PsA) is an inflammatory arthritis that is present in 6%-42% of patients with PsO. Approximately 15% of patients with PsO have undiagnosed PsA. Predicting patients with a risk of PsA is crucial for providing them with early examination and treatment that can prevent irreversible disease progression and function loss.

The development of digital health services reflects not only the technical development of services but also a change in attitude and the way of thinking. It has become a cornerstone for engaging and activating patients and citizens in health management while living at home. Digital health services are also aimed at enhancing the efficiency and quality of services, while simultaneously providing services more cost-effectively. In 2020, the COVID-19 pandemic accelerated worldwide the development and use of digital services in response to requirements for social distancing and other regulations.

Social connectedness decreases human mortality, improves cancer survival, cardiovascular health, and body mass, results in better-controlled glucose levels, and strengthens mental health. However, few public health studies have leveraged large social media data sets to classify user network structure and geographic reach rather than the sole use of social media platforms.

Data provenance refers to the origin, processing, and movement of data. Reliable and precise knowledge about data provenance has great potential to improve reproducibility as well as quality in biomedical research and, therefore, to foster good scientific practice. However, despite the increasing interest on data provenance technologies in the literature and their implementation in other disciplines, these technologies have not yet been widely adopted in biomedical research.