Journal of Participatory Medicine最新文献

Background: Black and Hispanic/Latino communities experience disproportionate chronic pain and are underrepresented in pain research. Transcutaneous auricular vagus nerve stimulation (taVNS) and transcranial magnetic stimulation (TMS) are promising tools for pain management. Therefore, it is critical to ensure that research using these tools engages all communities to make research findings more generalizable and reach all who may benefit. Lack of diversity in the research workforce itself is a key barrier to improving Black and Hispanic/Latino representation in pain research, and video-enhanced recruitment and consenting may be useful tools to better engage Black and Hispanic/Latino communities.

Objective: The primary goal of this project was to use participatory methods to develop informational videos for inclusive brain stimulation research recruitment.

Methods: Using community participatory research principles in an iterative process, key stakeholders were engaged in 2 consecutive studies to create and then test informational videos on taVNS and TMS. The key stakeholders included neuromodulation researchers as well as Black English-speaking, Hispanic/Latino Spanish-speaking, and Haitian Creole-speaking people with chronic pain. The first study involved iterative feedback from stakeholders through focus groups and interviews to develop test videos, which were then refined based on community member input. The second study was a pilot randomized controlled trial used to assess the impact of these videos on participant expectations for pain relief with taVNS.

Results: Twenty-five community members with chronic pain provided input into the development of the videos, which received overwhelmingly positive feedback. Twenty-eight people with chronic neuropathy were enrolled in the randomized controlled trial, with 24 completing the study. There was no significant difference in expectancy scores between participants who viewed the videos and those who received traditional brochures (median values of 8.2 for both groups; 95% CIs for the means of 7.2-8.7 and 6.4-8.7, P=.8).

Conclusions: These findings suggest that while the videos may improve engagement, they do not unduly influence expectations, potentially making them valuable tools for improving research participation in noninvasive brain stimulation research. These videos will be freely available to help researchers engage people from diverse communities.

Background: Digital transformation is now a fundamental component of health care systems worldwide. To develop effective digital health strategies, it is essential to examine physicians' perspectives on the barriers and facilitators of implementation, with particular attention to regional and cultural factors influencing technology adoption.

Objective: This study aims to identify and analyze key barriers and facilitators to the implementation of digital health technologies from physicians' perspectives in Russia.

Methods: A 2-phase nationwide mixed methods study was conducted involving 460 physicians from various specialties. The first phase comprised in-depth interviews with 10 physicians to develop a specialized questionnaire. The second phase involved a nationwide cross-sectional survey with 450 physicians using the developed questionnaire. Inclusion criteria were working in a Russian city with a population of more than 100,000, age 22 years and older, at least 3 years of specialty experience, and employment in public or private health care institutions. The analysis focused on 4 categories of digital health technologies: remote consultations, remote monitoring, digital diagnostic solutions, and clinical decision support systems.

Results: The main barriers identified were fear of making erroneous decisions (25% of physicians), technical difficulties (up to 25%), and legal insecurity (21% of physicians). Notably, the barrier profile varied depending on the type of technology. Key drivers for implementation included time saving (59% of physicians), practical benefits (55% of physicians), and legal security (54% of physicians). Additionally, a convenient training organization was a crucial motivator, with the availability of free training (53% of physicians) and provision of study leave (52% of physicians). These facilitators were consistent across all categories of digital solutions. Based on these findings, key recommendations for the implementation of digital transformation in medical organizations were formulated.

Conclusions: The findings highlight the need for comprehensive, technology-specific digital implementation strategies to improve health care digital transformation effectiveness, considering physician concerns about decision-making accuracy, technical challenges, and legal frameworks.

Unlabelled: Policies governing health care professionals must be evidence-informed and include meaningful representation of all stakeholders, or commitments to quality and equity will remain shallow rhetoric. Physician associates (PAs), nurse practitioners (NPs), and patients deserve full participation in decisions affecting practice and patient care. The current health care landscape faces unprecedented workforce challenges, requiring a shift toward evidence-informed policy and the meaningful representation of all stakeholders. This editorial aims to advocate for the full participation of PAs, NPs, or advanced practice providers and patient representatives in clinical and policy decisions, contrasting established global models with emerging frameworks to promote a more practical, team-based hierarchy. While recent reviews in the United Kingdom highlight a lack of localized, high-quality data, extensive evidence from the United States and other international contexts demonstrates that PAs and NPs provide safe, effective care with clinical outcomes comparable to physicians. We argue that recognizing these professionals as integral members of the health care workforce, rather than mere stopgaps, is essential for improving care quality and patient well-being. This editorial recommends standardized credentialing, integrated educational pathways, and the inclusion of patient representatives as voting members in policy decisions to foster a truly participatory medicine model.

Background: Digital mental health interventions (DMHIs) 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 a lack of engagement and sustained use. While this is increasingly common, there are often budget and timeline restraints in research settings that limit true co-design. As part of the Nurture-U project exploring a whole-university approach to student mental health, we coadapted an existing digital platform, i-Spero (P1Vital), 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.

Objective: This study aims to present an inductive analysis of meeting notes and recordings of the co-design process, in order to highlight what aspects of DMHIs our advisors valued and what, as a research team, we were able to implement. The hope is that this will inform future mental health interventions in this age group.

Methods: The i-Spero digital well-being platform was developed over an iterative process with multiple rounds of feedback from student advisors in 2022-2024. An inductive qualitative analysis approach was implemented by 2 authors (NA and JD) on the detailed feedback reports and meeting summaries of this process to generate categories and themes from the student advisors' feedback.

Results: Three themes were created: "Relevance and Usefulness," highlighting the importance of comprehensive features linking in with all aspects university life, while treating young people as adults; "Simplicity and Clarity," with student advisors suggesting edits that removed burden from the user and eased access to support; and "Acceptability and Inclusiveness," ensuring awareness of the needs of students from different backgrounds, and what young people with mental health difficulties may be able to access in times of need.

Conclusions: There are some challenges in ensuring that DMHIs are both comprehensive and simple. These can be met by ensuring the aesthetic design and platform structure are consistent and clear. Co-design and development are crucial due to the difficulty in ensuring that online interventions are relevant to specific audiences in the constantly evolving digital landscape. The structures surrounding our joint adaptation of an existing intervention meant that not all the changes suggested could be implemented. Future work should explore the impact of different participation frameworks when coproducing interventions with young people.

Background: 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.

Objective: This study aims to describe the effect of community advisor input on 2 concerns identified during the conduct of a clinical trial.

Methods: Using data from the PREPARE (Person Empowered Asthma Relief) randomized clinical trial studying the use of inhaled corticosteroid (ICS) as part of rescue therapy for asthma, we examined the effect of protocol changes suggested by community advisors to address study implementation concerns.

Results: Community advisors addressed 2 issues that threatened the success of the research: low response rates to monthly outcome surveys and low reported use of ICS with nebulizer rescue treatments. Initial low survey response rates were addressed by changing reminder frequency, shortening the survey, reducing the burden of logging in, and adding a raffle prize for timely responses. In the pilot phase of the study, the overall 3-month survey response rate was 67% (64 completed of 96 possible surveys). After protocol changes, the survey response rate over the first 3 months was 96.08% (3404 completed of 3543 possible surveys) and was 87.38% (1032 of 1181 participants) for each individual's final 3 months; the overall response rate for the full study was 92.3%. For the full study, 72.1% (n=850) of 1181 participants completed all of their first three surveys compared with only 25% (n=8) of 32 pilot enrollees. Early low use of ICS with nebulizers was addressed by additional communication, reminder stickers, and designing a method to attach a provided ICS inhaler to the nebulizers. The percentage of people reporting use of 3 to 5 puffs of ICS with each nebulizer treatment rose from 42.1% (200/475) in the early full study to 75.4% (525/696) following the protocol changes.

Conclusions: Multicomponent changes to the PREPARE protocol crafted by community advisors were associated with improved monthly survey rates and ICS adherence during nebulizer use.

Background: 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.

Objective: Using a community-engaged approach within the Fostering African-American Improvement in Total Health! (FAITH!) Heart Health+ ancillary study, we assessed the feasibility of participant-centric CDR collection, and its association with measures for individual, interpersonal, and structural stress and exposure to racism in medically underserved African American women and men.

Methods: Participants residing in the Minneapolis-St Paul and Rochester, Minnesota areas provided survey data (everyday discrimination, perceived stress, mood, sleep quality, and high effort coping measures), and saliva samples (morning and afternoon) via at-home, self-collection kits for cortisol measurement. CDR was calculated as a difference in log cortisol levels (ie, log of the cortisol diurnal peak-to-nadir ratio). Geospatial Area Deprivation Index and the distance lived from George Floyd Square in Minneapolis were calculated. Linear regression examined the association between CDR and outcome variables.

Results: Of consented participants (n=53), 70% (37/53) provided cortisol samples. The final analytic sample included 32 participants with complete and physiological diurnal cortisol curves (mean age 57.5 years, 62.5% [20/32] women). Lower (less dynamic) CDR in women (n=20) was associated with greater perceived stress (β=-0.07, P=.01), greater anxiety (β=-0.06, P=.01), higher Superwoman Schema score (β=-0.02, P=.04), and greater distance from George Floyd Square (β=-0.02, P=.01). No associations were observed in men (P>.05).

Conclusions: The current results suggest that CDR from participant-led saliva collection is feasible and may serve as a biomarker of chronic and physiological stress in African American women, particularly those residing in underresourced areas.