Jennifer Yessis

Assessing Research Participants’ Perceptions of their Clinical Research Experiences

Introduction: Participants’ perceptions of their research experiences provide valuable measures of ethical treatment, yet no validated instruments exist to measure these experiences. We conducted focus groups of research participants and professionals as the initial step in developing a validated instrument.

Development of a Research Participants’ Perception Survey to Improve Clinical Research

Introduction: Clinical research participants’ perceptions regarding their experiences during research protocols provide outcome‐based insights into the effectiveness of efforts to protect rights and safety, and opportunities to enhance participants’ clinical research experiences. Use of validated surveys measuring patient‐centered outcomes is standard in hospitals, yet no instruments exist to assess outcomes of clinical research processes.

Canada’s Physical Literacy Consensus Statement: process and outcome

BackgroundHealthy movement behaviours of Canadian children and youth have been found to be suboptimal; this is associated with declines in physical fitness, increases in obesity, and elevated chronic disease risk. Physical literacy is an evolving construct representing foundational domains upon which physically active lifestyles are based. Many sectors and organizations in Canada are embracing physical literacy in their programs, practices, policies, and research; however, the use of inconsistent definitions and conceptualizations of physical literacy had been identified by stakeholders as hindering promotion and advancement efforts.MethodsWith leadership from ParticipACTION, organizations from the physical activity, public health, sport, physical education, and recreation sectors collaborated to create a physical literacy consensus definition and position statement for use by all Canadian organizations and individuals. The process involved an environmental scan, survey of related evidence, stakeholder consultations, and creation of a Steering Committee. From this background work a consensus statement was drafted, shared with stakeholders, revised, and ratified.ResultsCanada’s Physical Literacy Consensus Statement was launched in June 2015 at the International Physical Literacy Conference in Vancouver, British Columbia. To further promote the Consensus Statement, the Sport for Life Society developed and simultaneously released the “Vancouver Declaration”, which contained additional guidance on physical literacy. Both the Consensus Statement and the Declaration endorsed the International Physical Literacy Association’s definition of physical literacy, namely “the motivation, confidence, physical competence, knowledge and understanding to value and take responsibility for engagement in physical activities for life”.ConclusionsSector partners hope that the Consensus Statement, with its standardized definition, brings greater harmony, synergy, and consistency to physical literacy efforts in Canada and internationally. Going forward, the impact of this initiative on the sector, and the more distal goal of increasing habitual physical activity levels, should be assessed.

Interorganizational Relationships in the Heart and Stroke Foundation’s Spark Together for Healthy Kids™ Insights From Using Network Analysis

The Heart and Stroke Foundation’s Spark Together for Healthy Kids™ (Spark) is a multiyear initiative in Ontario, Canada, that takes a population approach to obesity prevention. It focuses on creating healthy environments by improving access to healthy foods and physical activity, with an emphasis on strengthening the advocacy capacity of organizations and citizens. Consistent with the complexity of the intervention, the evaluation of Spark applied systems concepts and methods to test the utility of network analysis as a method for evaluation, and to inform collaborations of organizations involved in programs and advocacy. Relationships among organizations from different sectors and jurisdictional levels with a focus on school community environments were of particular interest. Interorganizational network analysis was used to understand these relationships, including the role of the Heart and Stroke Foundation. Findings revealed a niche brokering role for the Heart and Stroke Foundation and other provincial and national organizations, and the importance of these brokers for engaging local and regional organizations. Findings also reinforced the importance of a mixed methods approach to network analysis, and the potential value of the analysis for scientific and practical purposes.

Research Participant-Centered Outcomes at NIH-Supported Clinical Research Centers

Although research participation is essential for clinical investigation, few quantitative outcome measures exist to assess participants’ experiences. To address this, we developed and deployed a survey at 15 NIH‐supported clinical research centers to assess participant‐centered outcomes; we report responses from 4,961 participants.

Tobacco use cessation interventions for lesbian, gay, bisexual, transgender and queer youth and young adults: A scoping review

Smoking prevalence among LGBTQ + youth and young adults is alarmingly high compared to their non-LGBTQ + peers. The purpose of the scoping review was to assess the current state of smoking prevention and cessation intervention research for LGBTQ + youth and young adults, identify and describe these interventions and their effectiveness, and identify gaps in both practice and research. A search for published literature was conducted in PubMed, Scopus, CINAHL, PsychInfo, and LGBT Life, as well as an in-depth search of the grey literature. All English articles published or written between January 2000 and February 2016 were extracted. The search identified 24 records, of which 21 were included; 11 from peer reviewed sources and 10 from the grey literature. Of these 21, only one study targeted young adults and only one study had smoking prevention as an objective. Records were extracted into evidence tables using a modified PICO framework and a narrative synthesis was conducted. The evidence to date is drawn from methodologically weak studies; however, group cessation counselling demonstrates high quit rates and community-based programs have been implemented, although very little evidence of outcomes exist. Better-controlled research studies are needed and limited evidence exists to guide implementation of interventions for LGBTQ + youth and young adults. This scoping review identified a large research gap in the area of prevention and cessation interventions for LGBTQ youth and young adults. There is a need for effective, community-informed, and engaged interventions specific to LGBTQ + youth and young adults for the prevention and cessation of tobacco.

Healthy school communities in Canada

Background and context: Healthy school communities aim to optimise student health and educational achievement. Various models, terms and resources have been used to describe healthy school communities. Policy makers and practitioners have reported confusion around many of the key concepts involved because of the varying models and terms. Importantly, practitioners have reported that the lack of clarity impedes progress related to advancing healthy school work. To address these issues and work towards a common understanding of healthy school communities within the Canadian context, a collaborative process involving practitioners, policy makers and researchers culminated in the production of a concept paper. Objective: Here, we describe the process used to develop the concept paper and summarise what is known about healthy school communities and the effectiveness of the approach. Method: Guided by a steering committee and expert panel, we identified, reviewed and summarised key resources to identify common components and principles necessary for a healthy school communities approach. Results: Core components of healthy school communities that emerged include the presence of education, social and physical environments, policy, community partnerships and the use of evidence. Fundamental principles for creating healthy school communities include the adoption of a whole school approach, education and health service synergy, planning and assessment, leadership and sustainability. Here, we describe the iterative and collaborative process to identify these key components and principles. Conclusion: Beyond the Canadian context, this discussion paper describes a process for enhancing communication among organisations and stakeholders invested in healthy school communities internationally.

Élaboration de critères définissant les pratiques prometteuses en promotion de la santé et en prévention des maladies pour le Portail canadien des pratiques exemplaires

1. Le programme peut être présent dans la littérature grise et pas exclusivement dans des articles évalués par les pairs. 2. Les résultats positifs du programme peuvent avoir été observés à court terme seulement (dans les six mois de l’intervention) ou seulement durant l’intervention elle-même. 3. Le programme peut avoir une faible incidence au sens où les résultats positifs sont présents chez moins de la moitié de la population cible, ou bien les résultats positifs sont si gnificatifs au niveau minimum seulement. 4. Le programme peut être mis en œuvre sur le terrain une fois seulement, et cela peut être au cours d’un essai pilote. 5. Le programme peut exiger la participation de spécialistes difficilement accessibles dans le contexte de l’intervention. 6. La qualité de l’étude ayant servi à évaluer le programme peut n’être que modérée. Résumé

Between worst and best: developing criteria to identify promising practices in health promotion and disease prevention for the Canadian Best Practices Portal

INTRODUCTION In health promotion and chronic disease prevention, both best and promising practices can provide critical insights into what works for enhancing the healthrelated outcomes of individuals and communities, and how/why these practices work in different situations and contexts. METHODS The promising practices criteria were developed using the Public Health Agency of Canadas (PHACs) existing best practices criteria as the foundation. They were modified and pilot tested (three rounds) using published interventions. Theoretical and methodological issues and challenges were resolved via consultation and in-depth discussions with a working group. RESULTS The team established a set of promising practices criteria, which differentiated from the best practices criteria via six specific measures. CONCLUSION While a number of complex challenges emerged in the development of these criteria, they were thoroughly discussed, debated and resolved. The Canadian Best Practices Portals screening criteria allow one to screen for both best and promising practices in the fields of public health, health promotion, chronic disease prevention, and potentially beyond.