Journal of Participatory Medicine最新文献

Background: Patient engagement in research is the meaningful and active involvement of patient/caregiver partners (i.e., patients and their family/friends) in research priority-setting, conduct, and governance. With the proper support, patient/caregiver partners can inform every stage of the research cycle, but common barriers often prevent their full engagement.

Objective: This participatory qualitative study answered the question: What are the facilitators and barriers to patient engagement experienced by patient/caregiver partners in a Canadian research context?

Methods: Participants were N = 13 patient/caregiver partners (Mage = 62 years, 85% women; 100% White) from four provinces who completed 60-90-minute semi-structured online interviews. The interviews were transcribed verbatim. One researcher and one patient/caregiver partner reviewed the transcripts and curated a dataset of 90 participant quotations representing facilitators and barriers to patient engagement. This dataset was co-analyzed using Participatory Theme Elicitation alongside seven patient/caregiver partners with diverse identities who were not among the participants we interviewed and, therefore, contributed novel perspectives.

Results: Four themes depicted factors that facilitate meaningful patient engagement alongside barriers that arise when these factors are not in place: (1) Co-defining roles and expectations, (2) Demonstrating the value and impact of engagement, (3) Psychological safety, and (4) Educating the public, patient/caregiver partners, and researchers. We then discuss how barriers to enacting these four factors can be mitigated and provide a practical checklist of considerations for both researchers and patient/caregiver partners for engaging together throughout the research cycle.

Conclusions: Researchers and patient/caregiver partners should draw from our findings to mitigate engagement barriers and facilitate meaningful engagement experiences.

Background: A chronic health condition (CHC) is a recognized risk factor for experiencing problems in sexual function (PSF). According to the International Classification of Diseases, 11th Revision (ICD-11), the development of severe symptoms of sexual distress is the defining criterion for clinically relevant sexual dysfunction. Data on the contribution of specific CHCs to clinically relevant sexual dysfunction symptoms and related health care needs are limited, hindering targeted interventions.

Objective: This study examines the prevalence of PSF, sexual dysfunction, and sexual distress; assesses associations with CHC status; evaluates sexual dysfunction diagnoses; and explores health care preferences.

Methods: Data collection in this cross-sectional population-based survey study was based on a questionnaire developed with patient and public involvement and administered by YouGov to a representative sample of adults in Germany. Analyses included 1970 women with and without CHCs and different CHC subgroups (mental health-related, gynecological, cardiovascular and metabolic, infectious and inflammatory, cancer, pain-related, and neurological). The outcomes measured were PSF, clinically relevant sexual dysfunction symptoms, sexual distress (Female Sexual Distress Scale-Desire/Arousal/Orgasm [FSDS-DAO]), and self-reported sexual dysfunction diagnoses. Multivariable regression and network analysis explored associations among CHC subgroups, PSF, sexual dysfunction, and FSDS-DAO scores.

Results: Among 1970 cisgender women (mean age 49.6, SD 16.0 years), 1186 (60.2%) reported CHCs. The 6-month PSF prevalence was 75.2% (820/1090) in women with CHCs and 62.5% (399/638) in women without CHCs. Clinically relevant sexual dysfunction symptoms were less prevalent (CHC: 202/1046, 19.3% vs no CHC: 68/601, 11.3%). Multivariable regression models showed an association between sexual dysfunction and CHCs (odds ratio [OR] 2.56, 95% CI 1.90-3.49), which was the strongest for women with mental health-related CHCs (OR 2.31, 95% CI 1.70-3.13) and cancer CHCs (OR 2.00, 95% CI 1.45-2.78). Being in a relationship was a protective factor for clinically relevant distress among women with CHCs. Network analysis showed positive associations of PSF with gynecological and mental health-related CHCs and of sexual dysfunction with mental health-related, gynecological, and cancer CHCs. Women with sexual dysfunction symptoms reported low rates of sexual dysfunction diagnosis (CHC: 39/200, 19.4% vs no CHC: 6/55, 10.7%) and treatment (CHC: 16/146, 11.0% vs no CHC: 3/40, 7.0%). Gynecologists were the preferred health care providers for sexual dysfunction. The most commonly reported unmet need was a lack of information. Digital solutions, such as apps and websites with exercises, were desired as health care innovations.

Conclusions: The burden of CHCs on women's sexual health

Background: Launched in January 2022, the SingHealth Patient Advocacy Network at the Department of Emergency Medicine (SPAN@DEM) represents the first emergency department-specific advocacy group in Singapore. This initiative marks a significant advancement in local patient advocacy efforts because it employs a shared collaborative model to address the needs and concerns of patients within the unique context of the emergency department environment. SPAN@DEM emerged in recognition of the limitations of existing cluster-level advocacy groups, which are inadequate to address specific challenges inherent to the fast-paced, high-pressure nature of the emergency department.

Objective: In this article, we describe the establishment of SPAN@DEM, discuss the challenges and considerations encountered, and reflect on lessons gleaned through this journey.

Methods: A start-up committee, comprising two emergency physicians and four patient advocates, was convened to delineate the processes required to form a new patient advocacy group. Key features of SPAN@DEM include co-leadership by an emergency physician and a patient advocate, and diverse membership composition with equal representation from health care professionals and patient advocates. SPAN@DEM convenes quarterly with informal luncheons during meetings to foster open communication between advocates and health care staff. Membership is voluntary and motivated solely by altruism, and all members are required to participate in mandatory advocacy training to empower them to provide more actionable insights.

Results: Since its inception, SPAN@DEM has implemented several initiatives such as PIKACHU (Project to Improve next-of-Kin Advice, Communications and Helpful Updates)-a suite of quality improvement measures that resulted in improved patient and next-of-kin satisfaction rates and reduced formal communication-related complaints-and Digital FAQ-an online web-based resource designed to clarify emergency department processes for patients. SPAN@DEM advocates have also contributed to the planning, design, and transition to the new Emergency Medicine Building. More importantly, SPAN@DEM has fostered a cultural shift towards patient-centered care, with the department now routinely engaging patient advocates in decisions affecting patient and next-of-kin experience.

Conclusions: SPAN@DEM exemplifies the value of specialized emergency department-specific advocacy groups in advancing patient-centered emergency care. This model may serve as an exemplar for other health care institutions seeking to enhance patient advocacy efforts.

Background: Recommendations from professional bodies, including the Royal College of Psychiatrists, advise mental health practitioners to discuss problematic online use with children and young people. However, barriers such as knowledge gaps and low confidence in initiating discussions often prevent these conversations from happening.

Objective: The Digital Dialogues project used a knowledge exchange approach, cocreating resources with young people, to support professionals in overcoming these challenges. This paper details the project design and reflects on the perspectives of the young people involved.

Methods: The project was guided by the "children and young people have ownership" model of cocreation. A total of 11 participants were purposively sampled to take part in the Digital Dialogues Young Persons Group (DDYPG) and were actively involved in the study workshops, creative tasks, and resource design and development. In total, 6 (55%) DDYPG members took part in interviews, and 2 (18%) also completed an anonymous survey evaluating their time in the DDYPG. Thematic analysis was used to explore data from interviews and qualitative survey responses together.

Results: The DDYPG successfully created several resources to support practitioners in addressing problematic online use with young people. Reflections from DDYPG members showed that creative engagement, meaningful involvement, and peer interactions were key motivators for participation and led to benefits, including feelings of empowerment and personal development. Anxiety, time demands, and potential exposure to triggering content could act as barriers. However, structured tasks, positive rapport with researchers, and flexible participation helped to mitigate these challenges.

Conclusions: The findings highlight ethical considerations and potential strategies for involving young people in resource development research projects in the future.

Background: Engaging patients, care partners, and others in research planning and conduct is increasingly valued. However, identifying the most effective ways to do so remains a challenge.

Objective: This study aimed to evaluate participation and participant experience using 3 engagement methods with the Low-Grade Glioma (LGG) Registry's Optimizing Engagement in Discovery of Molecular Evolution of Low-Grade Glioma (OPTIMUM) project, part of the National Cancer Institute's Participant Engagement and Cancer Genome Sequencing Network.

Methods: We evaluated LGG Registry research advisory council (RAC) meetings, Twitter (now known as X), and Facebook discussions across 4 engagement activities with each group. Researchers recorded discussions and performed qualitative content analysis to evaluate differences in the nature of interactions and recommendations for promoting trust and participation in LGG Registry research. Participants completed experience surveys after engagements 1 and 4 (Public and Patient Engagement Evaluation Tool, Research Engagement Survey Tool, Trust in Medical Researchers Scale, and Patient Engagement in Research Scale).

Results: RAC engagements involved 25 unique participants representing diverse backgrounds; tweet chats and Facebook discussions had 197 and 133 participants, respectively. Qualitative findings highlighted differences in the nature of interactions (eg, communication styles and types of information shared) across groups, but there was general agreement around recommendations for promoting participation in genomic research. Postengagement surveys (n=52 in ipostengagement activity 1; n=40 in postengagement activity 4) showed patterns suggesting a more positive experience overall for the RAC.

Conclusions: Advisory councils and social media engagement methods have advantages and disadvantages. Advisory councils provide consistent interactions with the same individuals and clear procedures. Despite theoretically broader reach, social media engagement may yield less diverse perspectives. The LGG Registry aims to use RAC and social media engagement methods to promote diverse perspectives and maintain consistent interactions.

Background: Artificial intelligence (AI) technology has made significant advancements in health care. A key application of using artificial intelligence for health (AIH) is the use of AI-powered chatbots; however, empirical evidence on their effectiveness and feasibility remains limited.

Objective: This study explored interest group perceptions of integrating AIH in youth mental health services, focusing on its potential benefits, challenges, usefulness, and regulatory implications.

Methods: This qualitative study used semistructured in-depth interviews with 23 mobile health stakeholders, including youth users, service providers, and nonclinical staff from an integrated youths' service network. We used an inductive approach and thematic analysis to identify and summarize common themes and subthemes.

Results: Participants identified AIH's potential to support education, navigation, and administrative tasks in health care, as well as to create safe spaces and mitigate health resource burdens. However, they expressed concerns about the lack of human elements, such as empathy and clinical judgment. Key challenges included privacy issues, unknown risks from rapid technological advancements, and insufficient crisis management for sensitive mental health cases. Participants viewed AIH's ability to mimic human behavior as a critical quality standard and emphasized the need for a robust evaluation framework combining objective metrics with subjective insights.

Conclusions: While AIH has the potential to improve health care access and experience, it cannot address all mental health challenges and may exacerbate existing issues. While AIH could complement less-complex services, it could not replace the therapeutic value of human interaction at this time. Co-design with end users is critical for successful AI integration. Robust evaluation frameworks and an iterative approach to build a learning health system are essential to refine AIH and ensure it aligns with real-world evolving needs.

Unlabelled: The use of artificial intelligence (AI) in health care has significant implications for patient-clinician interactions. Practical and ethical challenges have emerged with the adoption of large language models (LLMs) that respond to prompts from clinicians, patients, and caregivers. With an emphasis on patient experience, this paper examines the potential of LLMs to act as facilitators, interrupters, or both in patient-clinician relationships. Drawing on our experiences as patient advocates, computer scientists, and physician informaticists working to improve data exchange and patient experience, we examine how LLMs might enhance patient engagement, support triage, and inform clinical decision-making. While affirming LLMs as a tool enabling the rise of the "AI patient," we also explore concerns surrounding data privacy, algorithmic bias, moral injury, and the erosion of human connection. To help navigate these tensions, we outline a conceptual framework that anticipates the role and impact of LLMs in patient-clinician dynamics and propose key areas for future inquiry. Realizing the potential of LLMs requires careful consideration of which aspects of the patient-clinician relationship must remain distinctly human and why, even when LLMs offer plausible substitutes. This inquiry should draw on ethics and philosophy, aligned with AI imperatives such as patient-centered design and transparency, and shaped through collaboration between technologists, health care providers, and patient communities.

Background: More than a few concepts have been presented in rehabilitation clinics that implement aspects of modern IT in the arrangement of augmented reality or virtual rehabilitation aiming to enhance cognitive or motor learning and rehabilitation motivation. Despite their scientific success, it is currently unknown whether rehabilitants will accept rehabilitation concepts that integrate modern ITs.

Objective: This study aims to investigate the subjective performance expectations of rehabilitation patients regarding the application of virtual reality (VR) or artificial intelligence technologies across various therapeutic fields, and to identify demographic and categorical differences in acceptance to inform the development and implementation of VR-based rehabilitation programs.

Methods: In total, 111 rehabilitation patients were surveyed about their subjective performance expectations of VR in 15 therapeutic fields with a questionnaire. The distribution of the responses was evaluated using box plots. The relationship between the subjective performance expectations for the 15 therapeutic fields was analyzed using the Spearman ρ coefficient, while the Mann-Whitney U test was used to compare subjective performance expectations between age groups and between genders.

Results: For all 15 therapeutic fields, the median of the subjective performance expectations was between 2 and 3, while therapeutic fields in the categories "activity/movement," "competence in daily life/communication," and "education" tended to be rated higher than therapeutic fields in the categories "relaxation/passive measures" and "advisory/conversation." A significant rank correlation was observed for 103 out of 105 pairwise comparisons of the therapeutic fields, with distinct patterns of effects sizes within the chosen categories. There was no significant difference in the evaluation between rehabilitants of employable age and those aged 68 years or older. Male rehabilitation patients reported greater subjective expectations for virtual rehabilitation than female patients, but there was only a significant difference with small effect sizes for 3 of the 15 therapeutic fields.

Conclusions: The general trend is that patients can imagine taking part in VR in rehabilitation activities involving active movement (physiotherapy, sports and exercise therapy, and occupational therapy) and health education. The results of the survey show that there is also a high level of support for the therapeutic field advisory/conversation. Current circumstances have led to substantial use of virtual offerings in practice. The limited data available may have encouraged the professional development of VR systems and their widespread use in medical rehabilitation follow-up in the home setting.