Journal of Participatory Medicine

Low retention and adherence increase clinical trial costs and timelines. Burdens associated with participating in a clinical trial contribute to early study termination. Electronic patient reported outcome (ePRO) tools reduce participant burden by allowing remote participation, and facilitate communication between researchers and participants. The Datacubed Health (DCH) mobile application is unique among ePRO platforms in its application of behavioral science principles (reward, motivation, identity, etc.) in clinical trials to promote engagement, adherence, and retention.

Newborn screening aims to identify babies affected by rare but serious genetic conditions. As technology advances, there is the potential to expand the newborn screening program following evaluation of the likely benefits and drawbacks. To inform these decisions, it is important to consider the family experience of screening and the views of the public. Engaging in public dialogue can be difficult. The conditions, screening processes, and associated moral and ethical considerations are complex.

Diabetic foot ulcers are common and costly. Most cases are preventable, although few interventions exist to reliably support patients in performing self-care. Emerging technologies are showing promise in this domain, although patient and health care provider perspectives are rarely incorporated into digital intervention designs.

Health authorities worldwide have invested in digital technologies to establish robust information exchange systems for improving the safety and efficiency of medication management. Nevertheless, inaccurate medication lists and information gaps are common, particularly during care transitions, leading to avoidable harm, inefficiencies, and increased costs. Besides fragmented health care processes, the inconsistent incorporation of patient-driven changes contributes to these problems. Concurrently, patient-empowerment tools, such as mobile apps, are often not integrated into health care professional workflows. Leveraging coproduction by allowing patients to update their digital shared medication plans (SMPs) is a promising but underused and challenging approach.

It remains unclear if there is agreement between physicians and patients on the definition of treatment success following orthopedic treatment. Clinical progress notes are generated during each health care encounter and include information on current disease symptoms, rehabilitation progress, and treatment outcomes.

Adolescents and young adults (AYA) with cystic fibrosis (CF) are at risk for deviating from their daily treatment regimen due to significant time burden, complicated daily therapies, and life stressors. Developing patient-centric, effective, engaging, and practical behavioral interventions is vital to help sustain therapeutically meaningful self-management.

Children with medical complexity represent a heterogeneous group of children with multiple chronic health care conditions. Caregivers of children with medical complexity experience a high intensity of caregiving that is often variable, extends across several networks of care, and often lasts for the entirety of the child’s life. The spillover, or indirect, economic impacts of caregiving are understudied in the context the family units of children with medical complexity. There have been recognized limitations to the sole use of quantitative methods when developing economic models of disease, because they lack direct caregiver voice and context of caregiving activities, and existing methods have been noted to be ableist.

Linguistic accommodation refers to the process of adjusting one’s language, speech, or communication style to match or adapt to that of others in a social interaction. It is known to be vital to effective health communication. Despite this evidence, there is little scientific guidance on how to design linguistically adapted health behavior interventions for diverse English-speaking populations. This study aims to document the strategies used to develop a culturally grounded cancer prevention intervention with the capabilities to linguistically accommodate to speakers of African American English (AAE). We describe the iterative process of developing a cancer prevention intervention with contributions of racially and linguistically diverse colleagues representing various community and institutional perspectives, including communication scientists, linguists, a community advisory board, professional voice talents, and institutional representatives for scientific integrity. We offer a detailed description of the successes and, in some cases, failures of strategies. Social stereotypes associated with AAE were prevalent at both institutional and community levels, resulting in unanticipated challenges and delays during intervention development. The diversity of linguistic, racial, and role identities within the message development team was integral to successfully addressing and identifying opportunities for process improvement. Language is a vital but often overlooked aspect of intervention development. Message designers should consider implicit social stereotypes that unintentionally shape linguistic choices. This study provides a novel overview of how various types of expertise and iterative message development processes contribute to successfully navigating cultural grounding when sensitive or stigmatized issues are salient.

The global shift toward plant-based diets has been increasing, with more people making the transition for various reasons. In vulnerable subgroups such as older adults, the transition to plant-based diets deserves attention due to the potentially detrimental consequences of lower protein quantity and quality.

Participatory design is an increasingly common informatics method to engage intended audiences in the development of health-related resources. Participatory design is particularly helpful for developing information visualizations that aim to improve health outcomes by means of improved comprehension, communication, or engagement, and subsequent behavior changes. Existing literature on participatory design lacks the practical details that influence the success of the method and does not address emergent issues, such as strategies to enhance internet-based data collection. In this tutorial, our objective is to provide practical guidance on how to prepare for, conduct, and analyze participatory design sessions for information visualization. The primary audience for this tutorial is research teams, but this guide is relevant for organizations and other health professionals looking to design visualizations for their patient populations, as they can use this guide as a procedural manual. This start-to-finish guide provides information on how to prepare for design sessions by setting objectives and applying theoretical foundations, planning design sessions to match project goals, conducting design sessions in different formats with varying populations, and carrying out effective analysis. We also address how the methods in this guide can be implemented in the context of resource constraints. This tutorial contains a glossary of relevant terms, pros and cons of variations in the type of design session, an informed consent template, a preparation checklist, a sample design session guide and selection of useful design session prompts, and examples of how surveys can supplement the design process.

In bipolar disorder (BD), mania may be self-induced by manipulation of specific precipitants, as reported in case studies. Another potential source of information on the self-induction of mania is the online postings of users with lived experience of mania.

The COVID-19 pandemic was an unprecedent challenge to public health systems, with 95% of cases in Quebec sent home for self-isolation. To ensure continuous care, we implemented an intervention supported by a patient portal (Opal) to remotely monitor at-home patients with COVID-19 via daily self-reports of symptoms, vital signs, and mental health that were reviewed by health care professionals.