JMIR Formative Research

Multiple myeloma (MM) is a chronic hematologic malignancy characterized by complex therapeutic strategies, repeated relapses, and substantial information and psychosocial needs. Advances in oral therapies and outpatient management have shifted greater responsibility to patients and caregivers, emphasizing the need for accessible, high-quality educational resources. Therapeutic patient education (TPE) aims to empower patients to understand and manage their condition more effectively. Digital education tools such as massive open online courses (MOOCs) represent an innovative approach to deliver structured, interactive, and scalable learning experiences to large patient populations. However, few MOOCs have been specifically designed for patients with oncological or hematological disorders, and even fewer have been rigorously evaluated for their educational impact.

Japan has universal coverage and designated pediatric oncology centers, yet the childhood cancer information ecosystem remains a “black box.” The incidence is measurable, but treatment exposure and long-term follow-up are not reliably linked across hospitals, registries, and survivorship services. The World Health Organization (WHO) CureAll framework highlights information governance as a lever for equity. This study aims to propose a formative design for national digital governance connecting registries, clinical systems, and survivorship in Japan. We synthesized international guidance and Japanese statutes, plans, and registry reports. Drawing on operational experience, we specified a minimal pediatric dataset, an HL7 Fast Healthcare Interoperability Resources (FHIR)–based interoperability architecture, and governance to align standards, consent, and data use. No new empirical data were collected. We outline a 4-layer architecture. Source systems (electronic health records, laboratory and radiology systems, pathology, and cooperative group databases) feed an HL7 FHIR gateway. A national Pediatric Data Steward governs standards and interoperability (FHIR profiles and application programming interfaces), terminology and coding (International Classification of Diseases for Oncology and International Classification of Childhood Cancer, with mappings to Systematized Nomenclature of Medicine–Clinical Terms and Logical Observation Identifiers Names and Codes), privacy and consent, data-use agreements, data quality, and audit. Outputs flow to the National and Hospital-based Cancer Registries and a patient-facing Digital Survivorship Passport, with bidirectional clinic updates and linkage to the resident registry and vital statistics. Security, audit, and public reporting span all layers. We define pediatric indicators and a staged road map. Transforming Japan’s pediatric oncology information into a learning system is chiefly a governance task. A Pediatric Data Steward, a harmonized pediatric data dictionary via FHIR, and a portable survivorship passport with layered consent can improve timeliness, completeness, follow-up, and transparency.

Postoperative intensive care unit (ICU) admission affects 15% to 20% of surgical patients and represents a major source of morbidity and health care costs. Current anesthetic dosing relies on empirical guidelines rather than individualized risk assessment. We developed a counterfactual dose-response model to identify optimal fentanyl-propofol combinations.

Digital health tools, including patient portals, telemedicine, and mobile health apps, are increasingly a core part of health care. Digital readiness, encompassing both digital access and literacy, is crucial for enabling patients to effectively engage with the increasing number of digital health tools. Despite growing recognition of digital readiness as a health-related social need, little is known about digital readiness screening practices.

Rare genetic diseases pose significant diagnostic and therapeutic challenges, often leading to delayed diagnoses, misinformation, and patient isolation. Social media platforms have emerged as prominent spaces for health information dissemination and community building among patients with rare diseases.

Digitalization has profoundly transformed health care delivery, including the increasing use of telemedical applications in pediatric care. While the economic benefits and improved access associated with telemedicine in rural regions are well documented, data on caregiver acceptance and demand in metropolitan areas remain limited.

In 2017, the US Department of Health and Human Services declared a national opioid crisis. In 2022, an estimated 81,806 overdose deaths involved an opioid. Emergency departments are critical in the pathway of care for providing resources and linkages to services. Studies investigating emergency medicine (EM) physicians’ perspectives on the opioid crisis have largely focused on prescribing.

The sociopolitical crisis in Haiti affects health care center attendance, creating significant challenges in ensuring patient compliance with medical appointments.

Vitiligo is a chronic skin disease with a global prevalence of approximately 1% to 2%, characterized by depigmented macules. Little is known about the public interest and medical needs of patients with vitiligo in Germany. However, understanding this is critical for a patient-centered holistic therapeutic management of the disease.

Mental health disorders are a growing public health concern among university students globally and in India, exacerbated by stigma and limited access to care. Mobile health (mHealth) apps offer a potential solution, but user engagement and cultural relevance remain key challenges. This pilot study evaluated Here for You, a mental health screening app co-designed with Indian university students to provide accessible, nonstigmatizing support.

Anemia is a widespread global health issue. Hemoglobin (Hb) concentration measurement remains the most common method for anemia screening and diagnosis. In recent years, there has been growing interest in the development of noninvasive point-of-care technologies that eliminate the need for blood sampling.

Individuals with tic disorders (TDs) have access to a small but growing number of digital tools (such as apps and websites) for tic management and support. While prior work has shown promise for these tools, they have traditionally been designed by researchers first and evaluated by members of the TD community after tool development is complete. A human-centered design process targeting this domain has the potential to reveal new insights relevant to the development of future tools. We seek to establish a preliminary understanding of how the TD community uses and perceives current resources for tic management and support as well as their overall concerns and needs in this area.