Abstract:Background
Patient-centered outcomes research (PCOR) engages patients as partners in research and focuses on questions and outcomes that are important to patients. The COVID-19 pandemic has forced PCOR teams to engage through web-based platforms rather than in person. Similarly, virtual engagement is the only safe alternative for members of the cystic fibrosis (CF) community, who spend their lives following strict infection control guidelines and are already restricted from in-person interactions. … Show more
“… 45 Similarly, Thayer et al reported that best practices for virtual engagement included the use of multiple platforms for both synchronous and asynchronous work goals. 46 Thus, our hybrid approach was likely beneficial.…”
Background Access to credible and relevant health care information is an unmet need for the transgender and gender-diverse (TGD) community. This paper describes the community engagement methods and resulting community priorities as part of a codesign process for the development of a Transgender Health Information Resource (TGHIR) application.
Methods A lesbian, gay, bisexual, transgender, and queer advocacy organization and an academic health sciences team partnered to establish a community advisory board (CAB) of TGD individuals, parents of TGD individuals, and clinicians with expertise in transgender health to inform the project. The analytic-deliberative model and group facilitation strategies based on Liberating Structures guided procedures. Affinity grouping was used to synthesize insights from CAB meeting notes regarding roles and perspectives on the design of the TGHIR application. We used the Patient Engagement in Research Scale (PEIRS) to evaluate CAB members' experience with the project.
Results The CAB emphasized the importance of designing the application with and for the TGD community, including prioritizing intersectionality and diversity. CAB engagement processes benefited from setting clear expectations, staying focused on goals, synchronous and asynchronous work, and appreciating CAB member expertise. TGHIR application scope and priorities included a single source to access relevant, credible health information, the ability to use the app discreetly, and preserving privacy (i.e., safe use). An out-of-scope CAB need was the ability to identify both culturally and clinically competent TGD health care providers. PEIRS results showed CAB members experienced moderate to high levels of meaningful engagement (M[standard deviation] = 84.7[12] out of 100).
Conclusion A CAB model was useful for informing TGHIR application priority features. In-person and virtual methods were useful for engagement. The CAB continues to be engaged in application development, dissemination, and evaluation. The TGHIR application may complement, but will not replace, the need for both culturally and clinically competent health care for TGD people.
“… 45 Similarly, Thayer et al reported that best practices for virtual engagement included the use of multiple platforms for both synchronous and asynchronous work goals. 46 Thus, our hybrid approach was likely beneficial.…”
Background Access to credible and relevant health care information is an unmet need for the transgender and gender-diverse (TGD) community. This paper describes the community engagement methods and resulting community priorities as part of a codesign process for the development of a Transgender Health Information Resource (TGHIR) application.
Methods A lesbian, gay, bisexual, transgender, and queer advocacy organization and an academic health sciences team partnered to establish a community advisory board (CAB) of TGD individuals, parents of TGD individuals, and clinicians with expertise in transgender health to inform the project. The analytic-deliberative model and group facilitation strategies based on Liberating Structures guided procedures. Affinity grouping was used to synthesize insights from CAB meeting notes regarding roles and perspectives on the design of the TGHIR application. We used the Patient Engagement in Research Scale (PEIRS) to evaluate CAB members' experience with the project.
Results The CAB emphasized the importance of designing the application with and for the TGD community, including prioritizing intersectionality and diversity. CAB engagement processes benefited from setting clear expectations, staying focused on goals, synchronous and asynchronous work, and appreciating CAB member expertise. TGHIR application scope and priorities included a single source to access relevant, credible health information, the ability to use the app discreetly, and preserving privacy (i.e., safe use). An out-of-scope CAB need was the ability to identify both culturally and clinically competent TGD health care providers. PEIRS results showed CAB members experienced moderate to high levels of meaningful engagement (M[standard deviation] = 84.7[12] out of 100).
Conclusion A CAB model was useful for informing TGHIR application priority features. In-person and virtual methods were useful for engagement. The CAB continues to be engaged in application development, dissemination, and evaluation. The TGHIR application may complement, but will not replace, the need for both culturally and clinically competent health care for TGD people.
“…In addition, the other scoping reviews that investigated remotely delivered interventions did not speak to the feasibility of synchronously delivered interventions [ 40 , 41 ]. A previously published study indicated that certain videoconferencing platforms and practices may facilitate web-based engagement in remote research [ 43 ]. Thus, synchronous yoga interventions using widely available and commonly used videoconferencing platforms should be implemented and investigated to determine the approaches that limit technological challenges.…”
Background
The popularity of yoga and the understanding of its potential health benefits have recently increased. Unfortunately, not everyone can easily engage in in-person yoga classes. Over the past decade, the use of remotely delivered yoga has increased in real-world applications. However, the state of the related scientific literature is unclear.
Objective
This scoping review aimed to identify gaps in the literature related to the remote delivery of yoga interventions, including gaps related to the populations studied, the yoga intervention characteristics (delivery methods and intervention components implemented), the safety and feasibility of the interventions, and the preliminary efficacy of the interventions.
Methods
This scoping review was conducted in accordance with the PRISMA-ScR (Preferred Reporting Item for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. Scientific databases were searched throughout April 2021 for experimental studies involving yoga delivered through technology. Eligibility was assessed through abstract and title screening and a subsequent full-article review. The included articles were appraised for quality, and data were extracted from each article.
Results
A total of 12 studies of weak to moderate quality were included. Populations varied in physical and mental health status. Of the 12 studies, 10 (83%) implemented asynchronous delivery methods (via prerecorded material), 1 (8%) implemented synchronous delivery methods (through videoconferencing), and 1 (8%) did not clearly describe the delivery method. Yoga interventions were heterogeneous in style and prescribed dose but primarily included yoga intervention components of postures, breathing, and relaxation and meditation. Owing to the heterogeneous nature of the included studies, conclusive findings regarding the preliminary efficacy of the interventions could not be ascertained.
Conclusions
Several gaps in the literature were identified. Overall, this review showed that more attention needs to be paid to yoga intervention delivery methods while designing studies and developing interventions. Decisions regarding delivery methods should be justified and not made arbitrarily. Studies of high methodological rigor and robust reporting are needed.
“…The literature was reviewed by the clinician-researchers and the educational specialist. Because in-person contact between patients with CF is restricted, we included information about the use of web-based platforms for virtual PCOR collaborations based on an in-depth interview study performed by our team [ 30 ]. Fig.…”
Background
Patient-centered outcomes research (PCOR) emphasizes patient-generated research priorities and outcomes, and engages patients throughout every stage of the research process. In the cystic fibrosis (CF) community, patients frequently provide input into research studies, but rarely are integrated onto research teams. Therefore, we developed and evaluated a virtual pilot PCOR training program to build PCOR capacity in the CF community (patients, caregivers, researchers, nonprofit stakeholders and providers). We aimed to show changes among participants’ perceived PCOR knowledge (a.k.a PCOR knowledge), confidence in engaging stakeholders, and post-training session satisfaction.
Methods
Guided by a prior CF community educational needs assessment, our researcher and patient-partner team co-developed a four-part virtual online training program. We structured the program towards two learner groups: patients/caregivers and researchers/providers. We evaluated participants’ PCOR knowledge, confidence in engaging stakeholders, and session satisfaction by administering 5-point Likert participant surveys. We tested for significant differences between median ratings pre- and post-training.
Results
A total of 28 patients/caregivers, and 31 researchers/providers participated. For both learner groups, we found the training resulted in significantly higher PCOR knowledge scores regarding “levels of engagement” (p = .008). For the patient/caregiver group, training significantly increased their PCOR knowledge about the barriers/enablers to doing PCOR (p = .017), effective PCOR team elements (p = .039), active participation (p = .012), and identifying solutions for successful PCOR teams (p = .021). For the researcher/healthcare provider group, training significantly increased participants’ ability to describe PCOR core principles (p = .016), identify patient-partners (p = .039), formulate research from patient-driven priorities (p = .039), and describe engagement in research grants (p = .006). No learner group had significant changes in their confidence score. Most participants were either “satisfied” or “very satisfied” with the training program.
Conclusions
Overall, our virtual pilot PCOR training program was well received by patients, caregivers, researchers and providers in the CF community. Participants significantly improved their perceived knowledge with core PCOR learning items.
Trial registration Retrospectively registered at clinicaltrials.gov (NCT04999865).
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