The Ottawa Citizen Engagement and Action Model (OCEAM): A Citizen engagement Strategy Operationalized Through The Participatory Research in Ottawa, Management and Point-of-care of Tobacco (PROMPT) Study

Abstract

Plain language summaryPlain language summaryThe PROMPT study is a community-based research project designed to understand the factors which affect smoking as well as ways to manage, reduce and quit smoking among people who use drugs in Ottawa. There is strong medical evidence that smoking tobacco is related to more than two dozen diseases and conditions. Smoking tobacco remains the leading cause of preventable death and has negative health impacts on people of all ages. Although Ottawa has one of the lowest smoking rates in Ontario (12 %), major differences exist, with approximately a 96 % smoking rate among those who use drugs in the city of Ottawa. To address this inequity, we recruited and trained four community research peers who were representative of the study target population (ex- or currently homeless, insecurely housed or multi-drug users). We designed the ten-step Ottawa Citizen Engagement and Action Model (OCEAM) for the PROMPT study. In this paper we have described this process in a step-by-step fashion, as used in the PROMPT study. The eighty PROMPT participants are being followed for six months and are being provided with free and off-label Nicotine Replacement Therapy (NRT).AbstractObjectives The PROMPT study, Participatory Research in Ottawa, Management and Point-of-care of Tobacco, is a prospective cohort study which utilizes community-based participation and social network-based approaches to address tobacco dependence in inner city Ottawa. The project was designed to: facilitate retention of participants; to understand the barriers and facilitators of smoking; optimize ways to manage, reduce, and quit tobacco use among people who use drugs in Ottawa, Canada. The purpose of this paper is to describe the processes utilized in citizen or patient engagement in academic research, through our tobacco dependence management project in the inner city population in Ottawa, Canada.Background Tobacco smoking is inequitably distributed in Canada with rates at 12 % in Ottawa, as compared to 18 % in rest of Canada. However, the PROUD Study (Participatory Research in Ottawa: Understanding Drugs) demonstrated that 96 % of the inner city population, of Ottawa currently smoke tobacco. This distinct inequity in tobacco use translates into inequitable distribution of health outcomes, such morbidity and mortality in this population. Consequently, a community-based participatory, peer-led research project was conducted in the inner city population of Ottawa.Methods We recruited and trained four community research peers who were representative of the study target population. We conceived, designed and operationalized the ten-step Ottawa Citizen Engagement and Action Model (OCEAM) for the PROMPT study. The peers have co-led all aspects of the project from conceptualizing the study question to participating in knowledge translation. Each step of the project had defined objectives and outcome measures.Discussion The involvement of peers in recruitment ensured representation of tobacco and drug users—individuals truly re...

Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot

“…A number of academic‐lay partnerships have produced similar frameworks, typically as a result of hybrid funding from academic, service and patient organizations . Common themes in this category included governance mechanisms including formal power‐sharing arrangements (eg, co‐chairing); good leadership and project management; clear and effective communication (including commitment to listening and responding); mechanisms to ensure inclusivity (eg, outreach, reimbursement); training and capacity‐building (of both researchers and lay partners); regular activities to maintain contact; promotion of shared values and collaborative learning (what one framework called a “participatory culture”); and metrics for measuring processes and impact.…”

“…A total of 56 frameworks were written up in 55 academic papers. 5,10,12,31,[33][34][35][36][38][39][40][41][42][43][44][45][47][48][49][50]52,53,[55][56][57][60][61][62][63][64][65][66][67][69][70][71][72][73][74][75][76][77][78][79][80][81][82][83][84][87][88][89][90]…”

“…31,34,53,58,65,72,73,75,77,[80][81][82]85,88,89 Some covered all lay involvement; others were restricted to specific groups such as older people, 61,80 those with a specific clinical condition, 36,59,72,75,84,87 those with or at risk of a genetic condition 72,85 or underserved or marginalized groups. 65,69,76,77,79 Most grey literature frameworks gave limited details of methodology, though one drew on academic sources 91 and two described and referenced a literature review. 46,54 Four papers proposed a "framework of frameworks" taxonomy of approaches to patient and public involvement in research (see Discussion for details).…”

“…98 A number of academic-lay partnerships have produced similar frameworks, typically as a result of hybrid funding from academic, service and patient organizations. 31,41,55,[59][60][61]77,79,82,84,85,91 Common themes in this category included governance mecha- Table 3, and the standards are reproduced in full in the Appendix S1.…”

“…Power-focused frameworks were rarely used directly, but they informed and underpinned subsequent work on more applied categories of framework. 46,51,58 Some but not all priority-setting, 46,78,85 study-focused [79][80][81] and partnershipfocused 31,38,55,58,59,61,82,84 frameworks went on to be used by the groups that developed them, but very few had evidence of adoption by other groups. One framework was promoted by the UK Health Technology Assessment programme as "best practice."…”