Community-based knowledge transfer and exchange: Helping community-based organizations link research to action

<p>Abstract</p> <p>Background</p> <p>Community-based organizations (CBOs) are important stakeholders in health systems and are increasingly called upon to use research evidence to inform their advocacy, program planning, and service delivery efforts. CBOs increasingly turn to community-based research (CBR) given its participatory focus and emphasis on linking research to action. In order to further facilitate the use of research evidence by CBOs, we have developed a strategy for community-based knowledge transfer and exchange (KTE) that helps CBOs more effectively link research evidence to action. We developed the strategy by: outlining the primary characteristics of CBOs and why they are important stakeholders in health systems; describing the concepts and methods for CBR and for KTE; comparing the efforts of CBR to link research evidence to action to those discussed in the KTE literature; and using the comparison to develop a framework for community-based KTE that builds on both the strengths of CBR and existing KTE frameworks.</p> <p>Discussion</p> <p>We find that CBR is particularly effective at fostering a climate for using research evidence and producing research evidence relevant to CBOs through community participation. However, CBOs are not always as engaged in activities to link research evidence to action on a larger scale or to evaluate these efforts. Therefore, our strategy for community-based KTE focuses on: an expanded model of 'linkage and exchange' (<it>i.e</it>., producers and users of researchers engaging in a process of asking and answering questions together); a greater emphasis on both producing and disseminating systematic reviews that address topics of interest to CBOs; developing a large-scale evidence service consisting of both 'push' efforts and efforts to facilitate 'pull' that highlight actionable messages from community relevant systematic reviews in a user-friendly way; and rigorous evaluations of efforts for linking research evidence to action.</p> <p>Summary</p> <p>Through this type of strategy, use of research evidence for CBO advocacy, program planning, and service delivery efforts can be better facilitated and continually refined through ongoing evaluations of its impact.</p

High heterogeneity of HIV-related sexual risk among transgender people in Ontario, Canada: a province-wide respondent-driven sampling survey

Abstract Background Studies of HIV-related risk in trans (transgender, transsexual, or transitioned) people have most often involved urban convenience samples of those on the male-to-female (MTF) spectrum. Studies have detected high prevalences of HIV-related risk behaviours, self-reported HIV, and HIV seropositivity. Methods The Trans PULSE Project conducted a multi-mode survey using respondent-driven sampling to recruit 433 trans people in Ontario, Canada. Weighted estimates were calculated for HIV-related risk behaviours, HIV testing and self-reported HIV, including subgroup estimates for gender spectrum and ethno-racial groups. Results Trans people in Ontario report a wide range of sexual behaviours with a full range of partner types. High proportions – 25% of female-to-male (FTM) and 51% of MTF individuals – had not had a sex partner within the past year. Of MTFs, 19% had a past-year high-risk sexual experience, versus 7% of FTMs. The largest behavioural contributors to HIV risk were sexual behaviours some may assume trans people do not engage in: unprotected receptive genital sex for FTMs and insertive genital sex for MTFs. Overall, 46% had never been tested for HIV; lifetime testing was highest in Aboriginal trans people and lowest among non-Aboriginal racialized people. Approximately 15% of both FTM and MTF participants had engaged in sex work or exchange sex and about 2% currently work in the sex trade. Self-report of HIV prevalence was 10 times the estimated baseline prevalence for Ontario. However, given wide confidence intervals and the high proportion of trans people who had never been tested for HIV, estimating the actual prevalence was not possible. Conclusions Results suggest potentially higher than baseline levels of HIV; however low testing rates were observed and self-reported prevalences likely underestimate seroprevalence. Explicit inclusion of trans people in epidemiological surveillance statistics would provide much-needed information on incidence and prevalence. Given the wide range of sexual behaviours and partner types reported, HIV prevention programs and materials should not make assumptions regarding types of behaviours trans people do or do not engage in.</p

Seeking Safer Sexual Spaces: Queer and Trans Young People Labeled with Intellectual Disabilities and the Paradoxical Risks of Restriction

Young lesbian, gay, bisexual, and transgender (LGBT) people labeled with intellectual disabilities have unique sexual health needs that are not being met. Denial by others of their right to pleasure and the exercise of heightened external control over their sexuality are commonplace. Current research indicates that these youth are at heightened risk for compromised sexual health. This study aimed to explore the ways in which social and environmental conditions influence vulnerability to adverse sexual health outcomes for this population. We used a community-based research approach to conduct qualitative interviews and focus groups with 10 young LGBT people (aged 17-26) labeled with intellectual disabilities. Participants reported multiple limitations on their autonomy that resulted in having sex in places where they did not feel comfortable and were unlikely to practice safer sex. Attempts by authority figures to protect youth through limits on their autonomy may be unintentionally leading to negative sexual health outcomes

De novo repeat interruptions are associated with reduced somatic instability and mild or absent clinical features in myotonic dystrophy type 1

Myotonic dystrophy type 1 (DM1) is a multisystem disorder, caused by expansion of a CTG trinucleotide repeat in the 3′-untranslated region of the DMPK gene. The repeat expansion is somatically unstable and tends to increase in length with time, contributing to disease progression. In some individuals, the repeat array is interrupted by variant repeats such as CCG and CGG, stabilising the expansion and often leading to milder symptoms. We have characterised three families, each including one person with variant repeats that had arisen de novo on paternal transmission of the repeat expansion. Two individuals were identified for screening due to an unusual result in the laboratory diagnostic test, and the third due to exceptionally mild symptoms. The presence of variant repeats in all three expanded alleles was confirmed by restriction digestion of small pool PCR products, and allele structures were determined by PacBio sequencing. Each was different, but all contained CCG repeats close to the 3′-end of the repeat expansion. All other family members had inherited pure CTG repeats. The variant repeat-containing alleles were more stable in the blood than pure alleles of similar length, which may in part account for the mild symptoms observed in all three individuals. This emphasises the importance of somatic instability as a disease mechanism in DM1. Further, since patients with variant repeats may have unusually mild symptoms, identification of these individuals has important implications for genetic counselling and for patient stratification in DM1 clinical trials