Background Childhood vaccination rates are declining, and more parents are becoming hesitant about vaccinating their children. Higher levels of vaccine hesitancy occur among parents with lower levels of educational attainment, who are also likely to have lower levels of health literacy. Objective We aimed to develop a web-based decision aid, considered a shared decision-making (SDM) approach, to inform and support Dutch parents in their decision-making about routine childhood vaccination, prioritizing the needs of hesitant parents and those with lower health literacy. We adapted the traditional SDM approach by balancing the ethical tension between the collective responsibility for public health and individual autonomy in vaccination decisions and focused the decision aid on evidence-guided (rather than preference-sensitive) decision-making. Methods The development process involved content development and web application development. We adopted a user-centered approach by actively engaging stakeholders, including parents, health professionals, and other experts. Participating stakeholders were purposefully selected and engaged through different routes to include a variety of perspectives. The general concept of vaccination as an evidence-based intervention to promote health at the individual and societal levels remained central throughout the development process. Results We conducted this project in the Netherlands from early 2023 through the end of 2024. We identified parental needs through interviews with 18 parents and a literature assessment. Parental needs, evidence-based information about vaccination, and how to communicate about vaccination informed the initial content of the decision aid. After feedback from the advisory group and subject matter experts, we refined the draft. At this stage, the textual content was inserted into a prototype web application. We subjected this prototype to 3 iterative cycles of testing, review, and adaptation. We analyzed and discussed the issues identified during testing and recommended adaptations to improve the design, structure, and content of the decision aid. These adaptations were subsequently discussed with the advisory group before being implemented. In response to the issues raised, we shortened the text blocks, replaced written information with visual elements, and restructured the layout to improve navigation. The final prototype consisted of the modules “Information” and “Decision Support.” Conclusions We co-developed a parent-facing decision aid (PDA) for childhood vaccination tailored to the needs of hesitant parents and those with lower health literacy. Through this intervention, we adapted an SDM approach to evidence-guided decision-making, creating space for individual concerns and deliberations without compromising evidence-based recommendations. Future research should focus on the timing of the intervention and the optimal window for offering the PDA in relation to the parents’ decision-making process.
Background:Recovery colleges (RCs) facilitate peer-supported learning communities where people experiencing mental disruption work on recovery. How recovery processes unfold, especially within RCs, remains insufficiently understood. Objective:Using a narrative approach, this study scrutinized how recovery processes unfold for RC partakers within RCs and in their everyday lives, and what RC attendance means in those processes. Methods:This study's design, recruitment, data collection, analysis, and manuscript drafting were co-created with experiential researchers (ie, RC partakers). Following an interview study (N=26), a diary-interview study was conducted (N=5) between November 2022 and January 2023. RC partakers completed qualitative diaries for 1 or 2 months, every other day, and reflected on this diary period in an evaluative interview (conducted by an academic and an experiential researcher). Recovery narratives of 3 diary participants (Emma, Robin, and Norah) are presented. Results:For Emma, peer-to-peer contact within the RC helps rebuild a supportive social network and stimulates her to face her anxieties. Robin described how RC attendance offers new perspectives, invites her to trust her own judgments, and reconsider possibilities such as paid employment. Norah's narrative illustrates how RC partaking in various capacities supported a shift in her identity from feeling like a failure to seeing herself as a valuable contributor. Considering all narratives, a cross-case analysis foregrounded the value of experiential knowledge in the recovery processes of the RC partakers. Two mutually reinforcing learning processes were identified: learning by exchanging and learning by doing. It also became clear that the RC explicitly facilitated contexts in which these processes can unfold, as partakers experienced recognition, inspiration, hope, perspective, supportive structures, and social safety. Experiences stemmed from learning processes and acted as catalysts for further learning. Importantly, these processes were not linear: partakers also experienced challenges in their everyday lives and within the RC. Conclusions:Our findings underscore the value of RCs in landscapes of mental care and support as they explicitly facilitate space for exchanging experiences among peers and experimenting with new behaviors. We illustrate the importance of investigating supportive processes and contexts to understand how recovery unfolds. We also present practical implications for RC offerings and participatory health initiatives more broadly.
BackgroundRecovery colleges (RCs) provide users of mental health services with self-management and coping skills, along with actions to promote social inclusion and reduce stigma. Research shows that recovery principles in mental health have the potential to improve services, but are poorly implemented. Better knowledge and understanding of RCs among mental health staff might help in addressing this challenge. ObjectiveIn order to shed light on that assumption, the study compares 2 RCs that differ in their formal relationship with the mental health service—1 “embedded” and 1 “freestanding.” This comparative study aims to uncover whether there are differences in the perceived value of the RCs by participants, and in mental health staff views on the benefits and challenges related to RCs, and the potential for collaboration. MethodsThe design is an explanatory comparative case study. Thick descriptions of the cases were based on document analysis and stakeholder interviews, subjected to content analysis. A “strategic change management model” guided data collection and analysis. Empirical patterns demonstrating the character and interrelations of the context, content, process, and outcome were identified in the case descriptions, forming tentative explanations of benefits and challenges observed. ResultsRC participants reported some differences in experiences possible to relate to course content. Information on mental health services enabled a more efficient use of those resources. A focus on communication and coping strategies helped in building bonds and relationships and finding support in social networks. Both RCs supported empowerment and reduced the sense of stigma. Mental health professionals had a positive image of the RCs but were not well informed about their activities. Few saw the college as an activity that could complement their professional services but had interesting reflections on their workplaces in relation to recovery. Exposure to an RC could support a reorientation from “diagnosis-centered” to a more patient-centered care culture. Users offering peer support could be “go-betweens” and “bridge builders” to mental health services. ConclusionsMental health staff aware of RCs and having knowledge of their benefits will provide support and guide users to participate. Such positive experiences are more important as a promoter of collaboration with users and the interest to contribute to a recovery-oriented care culture than the organizational form of the RC and its formal link to mental health services.
Unlabelled:This article serves as a formal tribute to the legacy of Dr Tom Ferguson and his foundational 2007 white paper on the "e-patient." Despite its widespread influence, Dr Ferguson's original vision has often been internalized by the broader medical community without clear historical attribution, leading to a drift in the term's original meaning. This article restores the intellectual genealogy of the "e-patient" as defined by Dr Ferguson as "equipped, enabled, empowered, and engaged." We argue for the continued relevance of his "quiet giant" leadership. By formalizing Dr Ferguson's foundational white paper e-Patients: How They Can Help Us Heal Healthcare within this article, we ensure its preservation for future research and provide a stable foundation for the evolving field of participatory medicine.
The line between tool and companion was once obvious, but conversational AI is blurring it in ways few researchers anticipated. Large language model chatbots and purpose-built AI companion agents are now used by millions of people every day. They are not being used to simply retrieve information but, instead, to offer emotional support, help process personal distress, and sustain what many describe as genuine relationships. Research puts the scale of this shift in sharp relief as nearly half (48.7%) of individuals with self-reported mental health concerns report having used a large language model for mental health support or therapy-related purposes. This Viewpoint argues that these uses are best understood through 3 unique but overlapping relational frames: AI as a therapist substitute, AI as a companion or confidant substitute, and AI as a romantic partner substitute. Drawing on empirical literature across digital mental health, psychology, communication, and human-computer interaction and grounded in the values of participatory medicine, this paper examines why people turn to AI for these intimate purposes; what they appear to gain; and what clinicians, designers, developers, and policymakers should examine more carefully as the practice evolves. The picture that emerges is neither straightforwardly optimistic nor dismissive. Therapeutic chatbots can produce real symptom reduction for users; AI companionship can ease loneliness in genuine, if bounded, ways; and the emotional relief some people experience in these interactions is not an artifact of naivety. But the same systems that lower the barriers to disclosure also lower the barriers to harm. AI chatbots regularly hallucinate clinical guidance, validate dysfunctional beliefs, handle crises without accountability, and may cultivate the very isolation they seek to relieve. Responsible integration requires something more demanding than a disclaimer. Instead, it requires transparent design, thoughtful escalation pathways, ongoing evaluation, and a commitment to the human connection that participatory medicine places at the center of good care.
BackgroundAI has become increasingly used in mental health care for applications such as diagnosis, monitoring, and treatment support. These include tools like clinician support systems, large language models, and conversational agents used to augment psychotherapy and clinical decision-making. While prior research suggests potential benefits of and concerns with AI, little is known within the domain of obsessive-compulsive disorder (OCD). Given the expanding role of AI in psychiatry, understanding these perspectives is essential to ensuring AI implementation aligns with patient priorities and values. ObjectiveThis study aims to explore the perspectives of individuals with OCD on the use of AI in health care, including perceived benefits, risks, and its role in relation to human clinicians. MethodsWe conducted semistructured interviews with 24 adults self-reporting OCD, recruited through online communities and advocacy networks. Eligible individuals (≥18 y with self-reported OCD) completed screening, provided informed consent, and participated in remote Health Insurance Portability and Accountability Act (HIPAA)-compliant Zoom (Zoom Communications, Inc) interviews (May-December 2024). Transcripts were deidentified, open-coded, and used to develop a codebook. Focused codes were applied using a thematic analysis framework in Dedoose (v9.2.22; Sociocultural Research Consultants, LLC). Each transcript was independently coded by 2 reviewers, with discrepancies resolved through consensus. Themes were developed through iterative interpretive analysis of code clusters. ResultsParticipants’ perspectives encompassed concerns and benefits of AI in mental health care. Participants expressed concerns about the accuracy and efficacy of information provided by AI, as well as a limited ability for clinical judgment in psychiatric care. Additionally, participants emphasized the importance of human connection, particularly therapeutic alliance, empathy, and reassurance provided by clinicians, which they felt AI could not replicate. Concerns about data privacy, security, and downstream use of information were also highlighted. Despite concerns, many endorsed the use of AI as an adjunct rather than a replacement for clinicians, noting potential benefits in symptom monitoring, preliminary information gathering, and support for administrative tasks, provided that human oversight is maintained. ConclusionsIndividuals with OCD expressed nuanced views on AI in mental health care, balancing cautious optimism with several concerns. While AI may improve efficiency, standardization, and symptom monitoring, participants highlighted risks related to deindividualization, accuracy, and erosion of human connection. These findings underscore the importance of patient-centered, ethically guided AI integration that preserves the therapeutic alliance while leveraging technological benefits.
BackgroundGenerative artificial intelligence (GenAI) tools are widely accessible to the public, who are engaging with them for a wide range of health care applications. Existing research has focused predominantly on clinician-facing adoption. Far less is known about how patients and family members use GenAI tools, particularly in rare disease contexts, where diagnostic delay, limited specialist access, and unmet informational needs are common. ObjectiveThis study aimed to examine the experiences and opinions of adult patients with rare diseases and parents or guardians of children with rare diseases regarding the use of GenAI tools. MethodsBetween November 2025 and January 2026, we conducted an exploratory mixed methods web-based survey using convenience sampling through rare disease community organizations in the United States. The survey included closed-ended items assessing prior GenAI use, purposes of use, perceived influence on medical decisions and diagnoses, trust, concerns, communication with clinicians, and experiences of harm, alongside open-text questions capturing qualitative reflections. Descriptive statistics were used to summarize quantitative data. Inductive qualitative analysis was applied to the open-text responses. ResultsA total of 115 respondents completed the survey. A majority of respondents were parents or guardians of a child with a rare disease (n=74, 64.3%), and the remaining respondents were patients with a rare disease (n=41, 35.7%). Slightly more than half of respondents (n=63, 54.8%) reported prior use of GenAI tools in the context of rare disease. Common purposes included exploring new treatments or clinical trials (n=53, 46.1%), interpreting medical tests or clinical notes (n=37, 32.2%), locating specialists or care centers (n=29, 25.2%), and suggesting possible diagnoses (n=28, 24.3%). Nearly one-third of respondents (n=37, 32%) reported some degree of influence of GenAI on their medical decisions. Nearly 10% (n=12) reported contributions of GenAI to a formal diagnosis. Concern about GenAI accuracy was widespread; 71 of 115 (61.8%) respondents reported moderate to extreme concern. Most respondents (n=90, 78.3%) had not discussed AI-generated information with a clinician. Few respondents (n=7, 6.1%) reported experiencing harm. Qualitative analysis identified 3 themes: (1) GenAI as a practical tool for augmenting patient and caregiver expertise and advocacy, (2) conditional trust and bounded use of GenAI with an emphasis on verification and human oversight, and (3) perceived risks, harms, and structural concerns, including inaccuracies, genetic misinterpretation, and privacy and commercialization issues. ConclusionsIn this exploratory study, patients and families affected by rare diseases were actively experimenting with GenAI tools to support information seeking, preparation, and advocacy while simultaneously expressing substantial caution and concern about the reliability, safety, and appropriate boundaries of use. Our findings contrast sharply with clinician concerns that patients lack the capacity to use GenAI tools judiciously. Notwithstanding, the sample was skewed toward highly educated participants. Future research should prioritize more representative samples to better capture the range of patient and caregiver experiences with GenAI in rare disease care.
BackgroundPalliative and end-of-life care (PEoLC) systems are expanding across services, settings, and stakeholders, increasing their complexity and the need for systemic understanding to support patient outcomes and service delivery. Hospice care is central to the future of PEoLC, as hospices provide holistic services and engage diverse stakeholders. Participatory system mapping offers a way to collectively understand and visualize complex dynamics with those who live and work within these systems. ObjectiveThis study aims to capture hospice system dynamics and preliminary leverage points via participatory causal loop diagram (CLD) mapping while evaluating method suitability through 3 research questions: (RQ1) What key variables and causal interrelationships do stakeholders identify in a hospice through participatory system mapping workshops? (RQ2) What preliminary leverage points emerge from the system map? and (RQ3) How effective are participatory system mapping workshops for capturing hospice dynamics? MethodsWe developed and iteratively refined an innovative hybrid, asynchronous, multimodal design workshop series in a hospice in North West England. Stakeholders were introduced to core concepts in technology, design, systems thinking, and CLDs before engaging in participatory system mapping focused on the hospice experience quality. CLDs generated in workshops and through asynchronous participation were consolidated into a composite hospice system map. Twenty-seven participants, including patients, health care professionals, volunteers, managers, maintenance staff, and chaplaincy, contributed to the mapping process. The resulting map was analyzed using quantitative network analysis (in-degree, out-degree, betweenness, and closeness centrality) alongside qualitative interpretation of key system dynamics. ResultsThe participatory hospice system map contained 84 variables connected by 175 causal links. Network analysis highlighted patient experience (highest in-degree, 20), advanced care planning (highest out-degree, 8), fundraising (highest betweenness centrality, 0.19), and relationships with community organizations and external stakeholders (highest closeness centrality, 0.23) as central elements in the map. Qualitative analysis illuminated important dynamics, including the impact of hospital admissions and hospice stereotypes, as well as uncertainties around how advanced care planning is shaped and enacted in practice. ConclusionsParticipatory system mapping with hospice stakeholders was feasible in a time-pressured setting and generated a nuanced, stakeholder-led representation of hospice system dynamics. The hybrid, multimodal workshop model enhanced access and flexibility, supporting diverse engagement. Network analysis of the CLD suggested preliminary structural and conceptual leverage points and revealed gaps in shared understanding, indicating candidate areas for service development, policy attention, and further research. Future work should examine the replicability of this approach across PEoLC settings and integrate context-specific processes to validate and act on candidate leverage points.
Background:Virtual research has emerged as a promising and convenient approach. This study investigates the experiences and challenges faced by patients with chronic respiratory diseases who participated in a virtual research study. Objective:This study aimed to explore the experiences of adults with chronic respiratory diseases participating in a virtual research study and to identify challenges they encountered to inform future virtual research design and implementation. Methods:Adults with a diagnosis of asthma or chronic obstructive pulmonary disease taking medications for their condition were recruited from the Greater Vancouver Area. A total of 185 participants completed an asthma-specific or chronic obstructive pulmonary disease-specific health literacy measurement tool through telephone interviews and then completed a postinterview checklist (n=36) or survey (n=149) on their experience with virtual research. To test the health literacy tool's reproducibility, 110 participants were retested and completed the same checklist (n=79) or survey (n=31). Interviews were transcribed and thematic analyses were conducted on interviews, surveys, and checklists. Results:Six overarching themes were identified: overall experience with virtual research, clarity of instructions, technology, communication, condition and cognition, and logistics. While participants generally reported a positive experience, the study identified significant challenges, including technological barriers, the need for clear and concise instructions, mental fatigue, and communication difficulties. Conclusions:These findings highlight the importance of providing comprehensive technical support, ensuring clear communication, and addressing ethical considerations in virtual research. This study contributes valuable insights to the growing body of literature on the viability and challenges of virtual research in health care.
AbstractResearch projects conducted in collaboration with patients and caregivers are more rigorous, relevant, and impactful within the communities of focus. One mechanism for facilitating patient and caregiver engagement in research is through a lived experience panel (LEP)—an intentionally assembled group of people with personal experience relevant to the research topic. LEPs can engage in any or all aspects of the research project, from study ideation to participant recruitment to dissemination and translation of findings. Fully realizing the potential of an LEP to inform the research process requires intentionality in LEP composition, as members should align with the range of lived experiences in the community of focus. Mechanisms to recruit patient or caregiver advisors for research may require researchers to reach beyond pre-existing relationships if they intend to achieve maximum variability. However, explicit processes for forming a maximally variable LEP are scarce. In this guide, we outline an LEP formation process that includes laying the foundation for recruitment with academic and community partners; collaboratively developing promotional materials and an interest survey; using community-embedded promotional channels to share information about the LEP opportunity; and selecting interviewees and LEP invitees using a process called maximum variance sampling. Outcomes of our LEP formation process include the relative productivity of each promotional channel, the specific timeline from LEP ideation to formation, the sociodemographic variability of our applicants, and real LEP members’ feedback on the formation process. We conclude by highlighting what we perceive as keys to success, including collaboration with trusted community partners and a thoughtfully designed interest survey that enabled us to narrow a large applicant pool to a diverse set of invitees. We also describe challenges and lessons learned, including opportunities to better articulate LEP responsibilities during interviews and ways to navigate the tensions inherent in selecting members based on maximum variance. Researchers are encouraged to invest time and resources into building relationships with community partners, knowing that these relationships lay the groundwork for reaching diverse patients and caregivers to advise research.
A new approach has been developed to establish the public value (utility) set for the generic health measure used in quality-adjusted life year estimates. In contrast to conventional approaches, it establishes the complete utility set for an individual and aggregates a sample of these to achieve the public set. The novel way of establishing the complete utility set for an individual has the potential to transform the nature and extent of a patient’s participation in the clinical decision-making process. We have modified the online elicitation of personal utility functions approach to overcome its impracticalities in a clinical consultation. The main modification is the replacement of choice-based items by scale-based ones, on the grounds that the former’s time and cognitive demands, while tolerable in the research context, make it infeasible in practice. The personal utility set for healthcare (PUSH) approach, like the online elicitation of personal utility functions one, may be used with any multidimension, multilevel instrument, including condition-specific ones, but the empirical application here is with the health-related quality of life instrument EQ-5D-5L. PUSH for EQ-5D-5L is a decision support tool in the form of a spreadsheet workbook. The clinician assists nondirectively in the elicitation of the patient’s utility set for EQ-5D-5L. Subsequently, the clinician, drawing on the best available evidence and information, enters the EQ-5D-5L states they judge, on the balance of probabilities, the patient will be in (at an agreed future time point), for specific interventions, plus no intervention. The relevant country’s public set utility for each displayed health state is simultaneously revealed. (Those for 13 countries are in the current template.) It is envisaged that the clinician holds the PUSH template on their computer and opens a new copy for use with each patient. They agree with the patient on what, if anything, is to be saved as part of their electronic medical record. The deliberation following engagement with PUSH and personalized evaluation of the contemplated interventions will typically involve sensitivity testing and possible revision of the patient and clinician inputs. One key responsibility of the clinician is to dispel any “aura of exactness” or pseudo-precision that may be created by the use of precise percentages (or values to 2 decimal places). PUSH participation is to be seen as a component of deliberative co-productive decision-making to which both parties contribute significantly but in role-appropriate ways. The outputs are intended to provide a useful, analysis-framed input into the subsequent discussion and co-produced decision. As a major clinical innovation that transforms both patient participation and clinician contribution, it is advanced here for the discussion and critique that will enable a conceptually sound trial protocol to be developed (including clinician tutoring).
BackgroundAntidepressant use and withdrawal are often accompanied by side effects such as dizziness, weight gain, and sexual dysfunction. Antidepressants and their associated side effects are stigmatized topics. Social media platforms such as Reddit are considered “safe spaces” by users because they can freely share their experiences and receive support. ObjectiveThis pilot study analyzed discussions from the subreddit r/depression to examine how users discuss antidepressant side effects, withdrawal symptoms, and related experiences of depression. MethodsWe scraped 10 high-engagement threads from the subreddit r/depression using the Python wrapper for the Reddit application programming interface and conducted a 2-step analysis. First, a pilot test was performed using sertraline (Zoloft) threads, followed by an analysis of all antidepressant-related threads. A subset of the data was hand-coded to create and validate regular expressions, which were then used to automatically code the remaining dataset. The resulting coded data were analyzed using epistemic network analysis and complemented with qualitative analysis and elements of semantic networks and hypergraphs. ResultsWe found that posts were more likely to discuss emotional flattening, sleep, and memory or cognitive issues (Mann-Whitney U=33,235.5; P=.003). Additionally, references to dizziness tended to co-occur with discussions of withdrawal and offers of empathy, while reports of dream-related side effects and requests for personal experiences also co-occurred frequently. By incorporating elements of semantic networks and hypergraphs, we deduced that offers of empathy occurred when users said they experienced dizziness caused by withdrawal, while mentions of “brain zaps” associated with withdrawal often co-occurred with offers of teaching support. ConclusionsStudy findings highlight how individuals experiencing antidepressant side effects and withdrawal symptoms use online forums such as Reddit to seek validation, share coping strategies, and provide emotional support to others. The nuanced discussions observed, particularly those related to empathy, symptom management, and shared learning, underscore the role of peer-to-peer networks in normalizing stigmatized experiences and mitigating isolation associated with antidepressant use. Clinicians and digital health practitioners can leverage these insights to better understand patient language, emotional framing, and informational needs outside clinical settings.
Background:The health of aging populations is among the top challenges facing global health systems. The use of mobile health (mHealth) approaches has been found to be effective in prompting changes and has been identified as a potentially valuable tool to enhance health behaviors among older adults. Objective:This study sought to explore the efficacy and acceptability of a personalized mHealth app for older adults, focusing on well-being, mental and physical health, and relationship with food. Methods:This secondary data analysis examined outcomes of real-world Holly Health users who enrolled between August 2022 and January 2023. Results:Results showed that, after the intervention, self-confidence, energy, mindfulness, health mindset, and short- and long-term mindset all improved. Furthermore, the personalized mHealth app showed a good level of acceptability among the participants. Conclusions:Engaging with this digital health intervention improved several aspects of physical and mental health, adding to existing evidence that effective and accessible tools are needed to promote healthy aging.
AbstractHealth digital twins, computational models that integrate longitudinal data, simulation, and forecasting, are increasingly proposed as tools for chronic care management. However, most current implementations are expert oriented, prioritizing technical optimization and clinical prediction while offering limited support for patient understanding, engagement, or participation. This orientation is particularly misaligned with chronic care, which unfolds largely outside clinical settings and depends on patients’ daily decisions, social context, and sustained engagement over time. In this viewpoint, we argue for reframing digital twins as participatory systems that support shared sensemaking among patients, caregivers, and clinicians rather than functioning solely as directive, expert-facing tools. We propose a conceptual framework that positions participatory digital twins as boundary objects capable of bridging computational models, clinical reasoning, and lived experience. Within this framework, generative artificial intelligence serves as a translation and interaction layer, enabling plain-language dialogue, exploration of uncertainty, and “what-if” reasoning that allows users to interpret model outputs in relation to their own contexts, goals, and constraints. We outline key design principles for participatory digital twins, including visible uncertainty, negotiated rather than prescriptive care, mechanisms for incorporating patient context and social drivers of health, and governance structures that support accountability and recourse. At the same time, this approach depends on meaningful opportunities for participation; appropriate safeguards around generative interaction; and careful attention to privacy, consent, and uneven access to digital resources. By shifting the focus from optimization alone to understanding, interaction, and trust, participatory digital twins offer a pathway toward more equitable, human-centered, and sustainable models of artificial intelligence–enabled chronic care.
AbstractHealth care is entering an era of unprecedented detection. Artificial intelligence (AI)–driven monitors and real-world data streams now identify clinical risks in minutes, promising a future of proactive, earlier intervention. While AI automation is often marketed as a tool to reduce administrative burden and allow health care providers to focus more on direct patient care, this unrealized potential currently stands in contrast to our reality. Building high-speed data “freeways” without “off-ramps” such as clinical staffing, workflow synergy, and the patient education required for meaningful response is like building a superhighway without well-engineered off-ramps to provide a safe way to get home, and this creates a dangerous paradox. Earlier detection without earlier care does not improve outcomes; it simply redistributes anxiety and extends the patient’s period of uncertainty. We argue that the “public as a sensor” is already signaling a systemic infrastructure gap. True safety in clinical AI isn’t found in more algorithmic guardrails, but in participatory co-design that ensures every digital alert has a viable human pathway to care and resolution. We must stop building high-speed roads that lead to a cliff edge of clinical unavailability and consider that while the technology is a feat of engineering, it’s our human architecture that makes it medicine.
Background:People living in rural areas of British Columbia experience inequities in access to health care that impact health and well-being. Since time immemorial, Indigenous peoples have had a holistic understanding of health and wellness, and knowledge of healthful ways of living. However, in a rural context, Indigenous peoples contend not only with inequitable access to health care, but also with the historical and ongoing impacts of colonization. Virtual health innovations enable access to care closer to home, yet the need for diagnostic tests and essential medicines remains limited by supply chains. In this context, transport of medical supplies by drone offers a promising solution and has the potential to improve access to health care in rural and First Nations communities in British Columbia. Objective:The Drone Transport Initiative is a co-created health care innovation project between the Stellat'en First Nation, the Village of Fraser Lake, the University of British Columbia, and other health system partners that investigated the feasibility of drones to transport medical supplies in a rural British Columbian context. This analysis aimed to understand the experiences and perceptions of the Project Team, people directly involved in the Initiative. Methods:Twenty members of the Project Team, including representatives from the Steering Committee and Operational Team having diverse roles within the project, participated in semistructured interviews. Eleven interviews were conducted either individually (n=5), in pairs (n=5), or in a group of 5 (n=1). Interviews were audio-recorded, transcribed verbatim, and anonymized. A reflexive thematic analysis was conducted to understand the Project Team's experiences and perceptions of the project. Initial results were shared with coauthors, including project cosponsors and community members, to interpret the findings and formulate discussion topics. Results:Participants generally expressed positive experiences from being part of the Drone Transport Initiative, despite remarking on various challenges. Major themes derived from the analysis centered upon (1) building respectful and trusting relationships, (2) mutual benefits that enabled effective and engaged partnerships, (3) meaningful community engagement that facilitated community acceptance and ownership of the project, and (4) this project is "the first step of something big." Themes were further divided into subthemes characterized as processes or outcomes. Conclusions:In this work, we highlight a health innovation project grounded in relational approaches and partnerships, where rural and First Nations communities are champions of advancing their development goals and co-creating solutions that address key social determinants of health. We contribute to the literature by emphasizing the relational foundation that is necessary at the cutting edge of innovation to co-create, implement, and sustain drone projects with rural and First Nations communities.
Background:Black, Indigenous, and people of color (BIPOC) experience disproportionately negative mental health outcomes, including rising suicide rates, and persistent barriers to culturally responsive care. Systemic racism, discrimination, and historical trauma contribute to mistrust of traditional mental health systems. Peer-led approaches that center lived experience and shared cultural identity may offer culturally responsive alternatives that foster emotional connection and trust. Objective:This study examined pretraining to posttraining changes in emotional well-being, empowerment, and interpersonal outcomes among BIPOC participants who completed Emotional CPR (Emotional Connection, Empowering, Revitalizing), a trauma-informed, peer-led mental health education program facilitated by BIPOC trainers. Methods:A convergent mixed methods pre-post design was used. Eighty-five BIPOC participants completed validated self-report measures immediately before and after a 12-hour web-based Emotional CPR training delivered over 3 consecutive days. Outcomes included loneliness, empowerment, flourishing, hope, active-empathic listening, mindfulness, social connectedness, and affect. Paired-samples 2-tailed t tests examined pre-post differences. Seventeen participants participated in 2 posttraining focus groups conducted through Zoom. Qualitative data were analyzed using thematic analysis informed by phenomenological principles. Quantitative and qualitative findings were integrated during interpretation. Results:Participants (N=85; mean age 41.9, SD 11.2 years; women: n=65, 76.5%) reported significant reductions in loneliness (P=.03; d=0.25) and significant increases in positive affect (P=.002; d=-0.37). Significant declines were observed in empowerment (P=.03; d=0.26), active-empathic listening (P=.02; d=0.26), flourishing (P=.02; d=0.27), and hope (P<.001; d=0.41). No significant changes were observed in social connectedness or mindfulness. Qualitative themes included empowerment through skill-building, emotional vulnerability, cultural trust and safety, challenges in sustaining confidence after training, and the application of skills in daily life. Participants described increased self-awareness and emotional openness, particularly within a culturally responsive training environment. Qualitative findings suggested that increased emotional awareness may have influenced posttraining self-assessments. Conclusions:Participation in BIPOC-facilitated Emotional CPR training was associated with short-term reductions in loneliness and increased positive affect, alongside modest declines in self-rated empowerment and hope. Qualitative findings suggest that increased emotional awareness and engagement with systemic stressors may temporarily influence self-perceived competence. Ongoing reinforcement, mentorship, and follow-up sessions may support sustained empowerment and emotional resilience in culturally responsive peer-led interventions.
Background:Hispanic individuals face a higher risk of skin cancer due to disproportionate occupational sun exposure; yet, culturally tailored resources for this demographic are scarce. Objective:The aim of this study was to codevelop a culturally tailored narrative video to enhance skin cancer prevention among Spanish-speaking Hispanic outdoor workers. Methods:We partnered with the National Conservatory of Dramatic Arts, medical specialists, national skin cancer prevention organizations, occupational health experts, and Hispanic outdoor workers to create an educational video that promotes sun protection and skin cancer awareness and prevention among Hispanic outdoor workers and their families. Development was based on extensive formative research, health behavior models, and interactive script review by multistakeholder and community advisory boards. Results:The final result is a 27-minute video that follows Miguel, who is taking ownership of his father's landscaping business as he is diagnosed with basal cell carcinoma. Throughout the video, Miguel and his wife, Sofía, learn about skin cancers, their warning signs, and steps for prevention, ultimately using this knowledge to protect and empower his employees and family. Key engagement strategies include cultural tailoring, story-driven learning, and visual modeling. Conclusions:This culturally and theoretically informed video represents a tool to increase knowledge and self-efficacy among Spanish-speaking Hispanic outdoor workers and their families, potentially reducing their skin cancer risk. Future research should evaluate the video's acceptability and impact on enhancing awareness, knowledge, and sun-protective behaviors.
