Journal of Participatory Medicine

The Knowledge Translation Innovation Incubator (KTII) initiative, launched by the Knowledge Translation program of the CHILD-BRIGHT Strategic Patient Oriented Research Network, provided funding support for researchers and partners to experiment with various approaches and strategies to support the development of innovative KT research in the context of neurodevelopmental disabilities.

Shared decision-making is increasingly valued worldwide in pediatric care; nonetheless, its application in Japanese clinical practice remains in its early stages, particularly in areas with substantial medical uncertainty, such as food allergy (FA) management. Although oral immunotherapy (OIT) is a promising option for children with FA, its long-term effectiveness and safety remain under evaluation, providing families with limited evidence to navigate emotionally complex decisions. Despite this clinical uncertainty, decision aids (DAs) are beneficial for organizing information and supporting patients and families in making value-congruent choices. Involving children in these decisions is increasingly recognized as ethically and developmentally appropriate. DAs clarify treatment options and promote informed collaborative decisions. However, most DAs target adult users and do not explicitly encourage engagement with children's views.

Digital mental health interventions can be particularly effective for young people, who live more of their lives online than older generations. Co-designing mental health support with young people can combat the challenges of lack of engagement and sustained use. While this is increasingly common, there are often budget and timeline restraints in research settings which limits true co-design. As part of the Nurture-U project exploring a whole-university approach to student mental health, we co-adapted an existing digital platform – i-Spero – with university students. This paper is a reflection on the impact that our student advisors had on the end product, and where the guidance of the young people was implemented, and not implemented, within the existing research parameters.

Community advisors including patients, families, clinicians, and payers, are important partners who can guide clinical research; yet, there is little evidence documenting the impact of community engagement on study changes and outcomes.

Managing patients with multiple chronic comorbidities is complex and challenging within traditional healthcare systems due to the need for multidisciplinary expertise, longitudinal tracking, and coordination. The development of collaborative online platforms leveraging user-driven healthcare (UDHC) and medical cognition principles offers new avenues for addressing these complexities by facilitating remote, participatory, and evidence-informed case management.

Experiences of mental distress are considered difficult to communicate, particularly experiences of psychosis. Research indicates that the frequently used medical focus falls short in capturing the nuanced interpersonal dynamics that these altered states may involve. Psychosis may seem very different from a lived experience perspective than it does from a traditional psychiatric perspective. This calls for innovative lived experience–based methodologies. This paper presents the development and preliminary evaluation of a design prototype co-designed to strengthen the role of people experiencing psychosis in the care process and describes its design rationale.

Chronic stress in African American individuals is multilayered amid the context of experiences of racism and discrimination. Cortisol dynamic range (CDR) may be an indicator of chronic stress, but CDR is understudied in African American populations compared with White populations, and is hypothesized to differ by sex.

Advancements in diagnostic technologies for the evaluation of infectious disease complaints in the outpatient setting have improved the speed and accuracy of pathogen detection and created the opportunity for higher accuracy in treatment planning. The benefits of these advanced diagnostics insights can be optimized when coupled with robust shared decision-making between the patient and clinician during the clinical encounter. This manuscript describes the process for integration of results from molecular testing for respiratory tract infection into a shared decision-making framework. It also explores how this synergy may lead to improved patient outcomes, enhanced health care delivery, and more collaborative care, while enhancing diagnosis and treatment of respiratory infections in various clinical settings.

Dementia poses a significant challenge in India. The rising incidence rates, limited resources, and restricted clinician access have contributed to a staggering 90% gap in diagnosis and care. Conversational technology provides a natural user interface with the potential to promote the independence, well-being, and safety of people living with dementia at home. However, the feasibility of implementing such technology to support people living with dementia across diverse cultural and economic settings remains underexplored.

The prevalence and incidence of dementia are higher in migrants and those with low socioeconomic status (SES). Mobile health (mHealth) interventions offer a potentially scalable way to reduce dementia risk via risk factor modification.

Patients with inflammatory bowel disease have periods with flare-ups including abdominal pain, diarrhoea, bloody stools and systemic symptoms that may influence negatively on the patients’ quality of life. Hence, prompt and intensified treatment is often required, and patients need to pay attention to self-management, including easy access to healthcare professionals. Seeking support is essential in patients’ self-management and beneficial for their quality of life. However, patients may experience difficulties in gaining access to healthcare professionals by phone or email when needed. mHealth interventions have shown to support patients with flexible, timely and ongoing communication with healthcare professionals. However, the most prevalent functions of present apps for patients with inflammatory bowel disease are tracking disease symptoms and accessing information. Additionally, there has been limited patient and clinician involvement in the design and development of eHealth apps for patients with inflammatory bowel disease. Although it is emphasized that patients with inflammatory bowel disease should be involved to identify tools and functionalities that the patients find relevant and effective.

Communication of imaging results is increasingly directed to patients, but controversies remain regarding report communication from the perspectives of patients, ordering providers, and radiologists.