Opportunities to improve asthma and COPD prevention and care: insights from the patient journey obtained through focus groups.

BACKGROUND: The healthcare experiences of patients hold valuable insights for improving the quality of services related to their well-being. We therefore invited and explored the perspectives of patients living with asthma and chronic obstructive pulmonary disease (COPD) on their interaction with the systems supporting health, in order to identify opportunities to improve services to prevent, treat and manage these conditions. METHODS: Two virtual focus groups were held in August 2021, one for adult asthma and one for COPD, to learn of patients' experiences receiving care for these conditions in the Vancouver Coastal Health (VCH) region of British Columbia. Participants were recruited through online postings or their clinician. We discussed the care pathway for each condition and invited participants to share their experiences of the past 5 years, specifically their reflections on the process, including feelings, points of praise and frustration, and opportunities for improvement in this context. Composite patient journey maps were developed for each condition to reflect the experiences shared. Audio recordings of the focus groups were transcribed and used in qualitative data analysis. RESULTS: Thematic analysis revealed the following as possible areas for improvement: low public awareness of asthma and COPD and associated risk factors, non-standardised diagnosis pathways that delay diagnosis, and inconsistency in delivering valued aspects of care such as supports for self-management, trust-inspiring acute care, empowering patient communication and timely access to care. CONCLUSION: We successfully used focus groups to generate composite journey maps of the experiences of patients living with asthma (n=8) and COPD (n=9) to identify features that these patients consider important for improving the healthcare system for asthma and COPD in VCH. Health professionals, decision makers and patient advocates in VCH and beyond can consider these insights when evaluating, and planning changes to, current practices and policies in service delivery.

Engaging interested parties to optimize wildfire smoke communication in Canada: challenges with initiating change.

Background: In February 2022, an online Wildfire Smoke Communication Workshop series identified priorities and strategies to improve wildfire smoke communication in Canada. We evaluated the engagement methods, the workshop series and workshop summary report, to determine if participants/organizations initiated changes identified in the workshop to optimize wildfire smoke communication plans. Methods: Three evaluation surveys were developed using the RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) framework dimensions and PRISM (Practical, Robust, Implementation, and Sustainability Model) contextual domains to measure the engagement impact. Surveys 1, 2, and 3 were disseminated to workshop participants between February 2022 (post-workshop series), May 2022 (pre-wildfire season), and September 2022 (post-wildfire season). Likert survey responses were analyzed descriptively using means and standard deviations. Open-ended written responses were analyzed using deductive reasoning and response proportions. Results: Of 69 workshop participants, 28, 19, and 13 responded to surveys 1, 2, and 3, respectively. Workshop participation helped survey 1 respondents consider optimizing wildfire smoke communication (M = 3.93, SD = 0.88). Workshop participation and the summary report helped survey 2 respondents consider new actions to optimize wildfire smoke communication (M = 3.84, SD = 0.74). The most intended action in survey 2 (68%, n = 13) and the most common action taken in survey 3 (62%, n = 8) was to simplify message content. The primary limitation to optimization was capacity. Conclusion: The engagement methods, particularly the summary report, were beneficial for organizations to take action to optimize wildfire smoke communication in Canada. Future engagement methods should examine persisting system-level issues and capacity limitations as they undermine the ability to optimize wildfire smoke communication in Canada.

Better Together: Launching and Nurturing a Community Stakeholder Committee to Enhance Care and Research for Asthma and COPD.

Partnering with patients and community stakeholders to identify, design, undertake, and evaluate research is increasingly common. We describe our experience with creating and developing an ongoing Community Stakeholder Committee to guide lung health research for disease prevention and health care improvement. This committee is central to the integrated knowledge translation approach of Legacy for Airway Health, which is dedicated to preventing and improving care for lung diseases. Patient Engagement in Research (PEIR) aims to improve the relevance, quality, and implementation of research activities. Meaningful patient and community engagement in research remains challenging to enact. The committee was established in October 2019, just before the COVID-19 pandemic, and quickly adapted from in-person to virtual engagement activities. This change led to an increased focus on relationship-building and mutual support alongside other research and training activities. We conducted a baseline evaluation survey after 1 year (October 2020), using a modified version of the Patient Engagement in Research Scale (PEIRS-22). Whereas individual scores suggested varied levels of meaningful engagement within the committee, overall results indicated strong personal relationships and a sense of feeling valued and respected, as well as a desire for increased opportunities to contribute to research within the program. Overall, this experience offers lessons learned about the importance of spending time and effort to build relationships, particularly in a virtual context, and shows that meaningful engagement can be achieved even when personal contact is limited. These efforts are illustrated in successful grant applications, research involvement, and stronger personal relationships.

Advancing primary and community care for persons with spinal cord injury: Key findings from a Canadian summit.

Context: Persons with spinal cord injury (SCI) experience significant challenges when they access primary care and community services.Design: A provincial summit was held to direct research, education, and innovation for primary and community care for SCI.Setting: Toronto, Ontario, Canada.Participants: Key stakeholders (N = 95) including persons with SCI and caregivers, clinicians from primary care, rehabilitation, and specialized care, researchers, advocacy groups, and policy makers.Methods: A one-day facilitated meeting that included guest speakers, panel discussions and small group discussions was held to generate potential solutions to current issues related to SCI care and to foster collaborative relationships to advance care for SCI. Perspectives on SCI management were shared by primary care, neurosurgery, rehabilitation, and members of the SCI communityOutcome Measures: Discussions were focused on five domains: knowledge translation and dissemination, application of best practices, communication, research, and patient service accessibility.Results: Summit participants identified issues and prioritized solutions to improve primary and community care including the creation of a network of key stakeholders to enable knowledge creation and dissemination; an online repository of SCI resources, integrated health records, and a clinical network for SCI care; development and implementation of strategies to improve care transitions across sectors; implementation of effective care models and improved access to services; and utilization of empowerment frameworks to support self-management.Conclusions: This summit identified priorities for further collaborative efforts to advance SCI primary and community care and will inform the development of a provincial SCI strategy aimed at improving the system of care for SCI.

Facilitators and Barriers to International Collaboration in Spinal Cord Injury: Results from a Survey of Clinicians and Researchers.

International collaboration in spinal cord injury (SCI) research is necessary to overcome the challenges often encountered by clinicians and researchers, including participant recruitment, high cost, and the need for specialized expertise. However, international collaboration poses its own obstacles. The objective of this study was to conduct an international online survey to assess barriers and facilitators to international SCI clinical research, potential initiatives to facilitate future collaborations, and the use of SCI-specific data sets and standards. Results were analyzed using descriptive statistics. Of 364 total respondents, 213 completed the survey, with the majority of these participants based in North America (38%), Asia (22%), Europe (18%), and Oceania (16%). Over half had more than 10 years of experience in SCI research or clinical practice (57%) and 60% had previous experience with international collaborations. Funding was identified as a top barrier (82%), a facilitator (93%), and a proposed future initiative (97%). Communication and technology were also identified as strong facilitators and proposed future initiatives. The International Standards for Neurological Classification of SCI were used by 69% of participants, the International Standards to document remaining Autonomic Function after SCI by 13% of participants, and the International SCI Data Sets by 45% of participants. As the need for international collaborations in SCI research increases, it is important to identify how clinicians and researchers can be supported by SCI consumer and professional organizations, funders, and networks. Furthermore, unique solutions to overcome modifiable barriers and creation of new facilitators are also needed.

Advancing research and clinical care in the management of neuropathic pain after spinal cord injury: Key findings from a Canadian summit.

Background: Optimal management of neuropathic pain (NP) is essential to enhancing health-related quality of life for individuals living with spinal cord injury (SCI). A key strategic priority for the Ontario Neurotrauma Foundation (ONF) and Rick Hansen Institute (RHI) is optimizing NP management after SCI. Aims: A National Canadian Summit, sponsored by ONF and RHI, was held to develop a strategic plan to improve NP management after SCI. Methods: In a one-day meeting held in Toronto, Ontario, a multidisciplinary panel of 18 Canadian stakeholders utilized a consensus workshop methodology to (1) describe the current state of the field, (2) create a long-term vision, and (3) identify steps for moving into action. Results: A review of the current state of the field identified strengths including rigourously developed evidence syntheses and practice landscape documentation. Identified gaps included limited evidence on NP hindering recommendation development in evidence syntheses, absence of a national strategy, care silos with limited cross-continuum connections, limited consumer involvement, and limited practice standard implementation. The panel identified key themes for a long-term vision to improve the management of SCI NP in Canada, including establishing an integrated collaborative network; standardized care and outcome evaluation; education; advocacy; and directing resources to innovative solutions. The panel identified the next step as prioritization of areas that will have the greatest impact in a 5-year time frame. Conclusion: A strategic plan outlining a long-term vision to improve management of NP after SCI in Canada was developed and will inform future activities of the sponsors.

Contexte: La gestion optimale de la douleur neuropathique est essentielle à l'amélioration de la qualité de vie liée à la santé des personnes vivant avec une lésion de la moelle épinière. L'une des priorités stratégiques de la Fondation ontarienne de neurotraumatologie et de l'Institut Rick Hansen est l'optimisation de la prise en charge de la douleur neuropathique après une lésion de la moelle épinière.Buts: Un sommet national canadien parrainé par la Fondation ontarienne de neurotraumatologie et l'Institut Rick Hansen a été tenu afin d'élaborer un plan stratégique pour l'amélioration de la gestion de la douleur neuropathique après une lésion de la moelle épinière.Méthodes: Dans le cadre d'une rencontre d'une journée tenue à Toronto, Ontario, un panel multidisciplinaire composé de 18 parties prenantes canadiennes a eu recours à la méthodologie de l'atelier consensuel pour (1) décrire la situation actuelle dans le domaine, (2) définir une vision à long terme et (3) déterminer les étapes à suivre pour passer à l'action.Résultats: Une revue de la situation actuelle dans le domaine a permis d'en répertorier les forces, parmi lesquelles on compte des synthèses de données probantes élaborées avec rigueur et la documentation des pratiques. Les lacunes suivantes ont été répertoriées: des données probantes limitées en ce qui concerne la formulation de recommandations pour empêcher la douleur neuropathique dans les synthèses de données probantes; l'absence de stratégie nationale; un mode de prestation des soins en silos, où les liens entre les continuums sont limités; une participation du consommateur limitée et une mise en œuvre limitée des normes de pratique. Le panel a répertorié les grands thèmes pour élaborer une vision à long terme afin d'améliorer la prise en charge de la douleur neuropathique occasionnée par une lésion de la moelle épinière au Canada, parmi lesquels on compte: l'établissement d'un réseau de collaboration intégré; la normalisation des soins et l'évaluation des résultats; l'éducation; le plaidoyer; et l'attribution de ressources aux solutions novatrices. Le panel a déterminé que la prochaine étape consisterait à prioriser les domaines qui auront le plus de répercussions au cours des cinq prochaines années.Conclusion: Un plan stratégique définissant une vision à long terme pour améliorer la prise en charge de la douleur neuropathique après une lésion de la moelle épinière a été élaboré. Ce plan servira de base aux prochaines activités des promoteurs.

Meeting the privacy requirements for the development of a multi-centre patient registry in Canada: the Rick Hansen Spinal Cord Injury Registry.

Privacy legislation addresses concerns regarding the privacy of personal information; however, its interpretation by research ethics boards has resulted in significant challenges to the collection, management, use and disclosure of personal health information for multi-centre research studies. This paper describes the strategy used to develop the national Rick Hansen Spinal Cord Injury Registry (RHSCIR) in accordance with privacy statutes and benchmarked against best practices. An analysis of the regional and national privacy legislation was conducted to determine the requirements for each of the 31 local RHSCIR sites and the national RHSCIR office. A national privacy and security framework was created for RHSCIR that includes a governance structure, standard operating procedures, training processes, physical and technical security and privacy impact assessments. The framework meets a high-water mark in ensuring privacy and security of personal health information nationally and may assist in the development of other national or international research initiatives.

Identification of protein interaction antagonists using the repressed transactivator two-hybrid system.

The repressed transactivator (RTA) yeast two-hybrid system was developed to enable genetic identification of interactions with transcriptional activator proteins. We have devised modifications of this system that enable its use in screening for inhibitors of protein interactions from small molecule compound libraries. We show that inhibition of protein interactions can be measured by monitoring growth in selective medium containing 3-aminotriazole (3-AT) and using this assay have identified inhibitors of four independent protein interactions in screens with a 23,000 small molecule compound library. Compounds found to inhibit one of the tested interactions between FKBP12 and the transforming growth factor beta receptor (TGFbeta-R) were validated in vivo and found to inhibit calcineurin-dependent signaling in T cells. One of these compounds was also found to cause elevated basal expression of a TGFbeta-R/SMAD-dependent reporter gene. These results demonstrate the capability of the RTA small molecule screening assay for discovery of potentially novel therapeutic compounds.

Targeted gene deletion in Leishmania major identifies leishmanolysin (GP63) as a virulence factor.

Leishmanolysin, the Leishmania surface metalloproteinase of 63 kDa (GP63) has been described as a parasite virulence factor and is involved in the direct interaction of promastigotes and host macrophage receptors and interaction with the complement cascade. To study the role of leishmanolysin in the pathogenesis and virulence of Leishmania major, targeted gene replacement was used to delete the entire 20 kb region containing all seven leishmanolysin genes (gp63 genes 1-7). The resulting L. major leishmanolysin deficient mutants showed normal development inside the sand fly vector, however, promastigotes recovered from sand flies or from culture showed an increase in sensitivity to complement-mediated lysis and a delay in lesion formation in BALB/c animals. The phenotypic differences could be significantly improved by expression of a cloned leishmanolysin gene. These results demonstrate that leishmanolysin is a vital virulence factor in Leishmania pathogenesis.