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The Ottawa Citizen Engagement and Action Model (OCEAM): A Citizen engagement Strategy Operationalized… Pakhale, Smita; Kaur, Tina; Florence, Kelly; Rose, Tiffany; Boyd, Robert; Haddad, Joanne; Pettey, Donna; Muckle, Wendy; Tyndall, Mark May 21, 2016

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PROTOCOL Open AccessThe Ottawa Citizen Engagement andAction Model (OCEAM): A Citizenengagement Strategy OperationalizedThrough The Participatory Research inOttawa, Management and Point-of-care ofTobacco (PROMPT) StudyA Community Based Participatory Action Research Project inInner City OttawaSmita Pakhale1,2,3*, Tina Kaur2, Kelly Florence2,4, Tiffany Rose2,4, Robert Boyd5, Joanne Haddad6, Donna Pettey6,Wendy Muckle7 and Mark Tyndall8,9* Correspondence:spakhale@ohri.ca; http://www.ohri.ca/Profiles/pakhale.asp1The Ottawa Hospital, University ofOttawa, Ottawa, Canada2The Ottawa Hospital ResearchInstitute (OHRI), University ofOttawa, Ottawa, CanadaFull list of author information isavailable at the end of the articlePlain language summaryThe PROMPT study is a community-based research project designed tounderstand the factors which affect smoking as well as ways to manage, reduceand quit smoking among people who use drugs in Ottawa. There is strongmedical evidence that smoking tobacco is related to more than two dozendiseases and conditions. Smoking tobacco remains the leading cause ofpreventable death and has negative health impacts on people of all ages.Although Ottawa has one of the lowest smoking rates in Ontario (12 %), majordifferences exist, with approximately a 96 % smoking rate among those who usedrugs in the city of Ottawa. To address this inequity, we recruited and trainedfour community research peers who were representative of the study targetpopulation (ex- or currently homeless, insecurely housed or multi-drug users). Wedesigned the ten-step Ottawa Citizen Engagement and Action Model (OCEAM)for the PROMPT study. In this paper we have described this process in astep-by-step fashion, as used in the PROMPT study. The eighty PROMPTparticipants are being followed for six months and are being provided with freeand off-label Nicotine Replacement Therapy (NRT).(Continued on next page)© 2016 Pakhale et al. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 InternationalLicense (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium,provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, andindicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Pakhale et al. Research Involvement and Engagement  (2016) 2:20 DOI 10.1186/s40900-016-0034-y(Continued from previous page)AbstractObjectives The PROMPT study, Participatory Research in Ottawa, Management andPoint-of-care of Tobacco, is a prospective cohort study which utilizes community-basedparticipation and social network-based approaches to address tobacco dependence ininner city Ottawa. The project was designed to: facilitate retention of participants; tounderstand 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 ofthis paper is to describe the processes utilized in citizen or patient engagement inacademic research, through our tobacco dependence management project in the innercity population in Ottawa, Canada.Background Tobacco smoking is inequitably distributed in Canada with rates at 12 % inOttawa, as compared to 18 % in rest of Canada. However, the PROUD Study(Participatory Research in Ottawa: Understanding Drugs) demonstrated that 96 % of theinner city population, of Ottawa currently smoke tobacco. This distinct inequity intobacco use translates into inequitable distribution of health outcomes, such morbidityand 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 wererepresentative of the study target population. We conceived, designed andoperationalized the ten-step Ottawa Citizen Engagement and Action Model (OCEAM)for the PROMPT study. The peers have co-led all aspects of the project fromconceptualizing the study question to participating in knowledge translation. Each stepof the project had defined objectives and outcome measures.Discussion The involvement of peers in recruitment ensured representation of tobaccoand drug users—individuals truly representative of the intended target population. Peer,participant engagement and trust was established from the conception of the project.For historical and self-evident reasons, trust and engagement is rarely found in thispopulation. Peers successfully participated in all ten steps of the Citizen Engagementand Action model. The PROMPT study utilized the CBPR (Community Based Participatoryresearch) approach to encourage engagement and build trust in a difficult to reach andhard to treat, inner city population. The ten-step OCEAM model was conceived, designedand operationalized and the PROMPT study will continue to follow the eighty PROMPTparticipants for six months to understand the optimal ways to manage, reduce, and quitsmoking within an inner city population.BackgroundThe complexities of the health problems faced by inner city, slum, or socially segre-gated populations are poorly suited for traditional, “outside expert-driven research andintervention approaches” [1]. Alternate approaches are urgently needed to address thevarious health issues disproportionally affecting these populations. Community-BasedParticipatory Research (CBPR) is an alternative approach in which researchers andcommunity stakeholders form equitable partnerships to tackle issues related to com-munity health improvement and knowledge production [2, 3]. CBPR is based on twoprimary assumptions for improving health outcomes and reducing disparities. Firstly,interventions can be strengthened if they benefit from community insight andPakhale et al. Research Involvement and Engagement  (2016) 2:20 Page 2 of 18incorporate community values. Secondly, there is added value to participation itself asit enhances health [4]. Participatory Action Research (PAR) is well-rooted in the early19th century when a well-known American philosopher, John Dewey eloquently de-scribed the association between knowledge and action [5, 6]. John Dewey’s philosophywas put into action by one of his famous students, Dr. B.R. Ambedkar, during his workwith issues surrounding casteism and exploration of discrimination against the lowestcaste groups in India. In particular, Ambedkar’s actions were based on fact finding andcritical reflections [7]. Kurt Lewin, a social psychologist, and John Collier, a socialworker and anthropologist, also expanded on these ideas of participatory research in1940s in the United States [8]. Greater, more meaningful participation in research is be-ing called for by peer-led drug advocacy action groups in Canada, “Nothing For Us,Without Us” [9]. Although there have been efforts to more meaningfully engage targetcommunities in research, the affected community is still rarely involved in every step ofthe development, design, and dissemination of research projects [10].The goal of participation in community development literature is to reduce depend-ency on health professionals, to ensure cultural and local sensitivity, to facilitate sus-tainability and to enhance productivity of programs. [11, 12] The health impacts ofparticipation, however, remain largely elusive. There is a body of work that problema-tizes community-based research in terms of empowerment and the tyranny of partici-pation [4]. However, research on the effectiveness of participatory strategies within theempowerment literature has demonstrated the effects of participation and empower-ment and the positive influence it has on improving health [4].The literature shows strong evidence that community participation contributes toprogram improvement through greater efficiency, sustainability, and more equitabledistribution of services [2, 3, 13–15]. Only a few published studies have tested designsto valídate the hypothesis that community participation provides additional health ben-efits. In Eng, Briscoe, and Cunningham’s (1990) landmark study in Indonesia and Togo,villages where water was installed with active community participation found that 25 to30 % more children were immunized, than in villages where there was no active com-munity participation [16]. This example provides insight into the unintended healthbenefits as a result of community participation. There are various challenges of study-ing community participation within community settings, where local context matters,dynamic processes are assumed, and participatory feedback is crucial to have an effect-ive intervention [4].Ideally, CBPR in public health is a partnership approach to research that equitably in-volves the community at large, for example, community members, organizational repre-sentatives, and researchers are involved in all aspects of the research process, in whichall partners contribute their expertise,share decision making and responsibilities [17,18]. The aim of CBPR is to increase knowledge and understanding of a givenphenomenon, integrate the knowledge gained with interventions and influence policychange to improve the health of communities at large. Within the context of CBPR,community is defined as a unit of identity [17, 18]. Based on an extensive review of theliterature [18], a list of eight principles or characteristics of CBPR have been identified:These include: i) recognizing community as a unit of identity; ii) building on strengthsand resources within the community; iii) facilitating collaborative partnerships in allphases of the research; iv) integrating knowledge and action for mutual benefit of allPakhale et al. Research Involvement and Engagement  (2016) 2:20 Page 3 of 18partners; v) promoting a co-learning and empowering process that attends to social in-equalities; vi) involving a cyclical and iterative process; vii) addressing health from bothpositive and ecological perspectives and viii) disseminating findings and knowledgegained to all partners.Researchers today are increasingly turning to CBPR approaches as a frameworkin which to conduct research. There is a growing recognition that “traditional”research approaches have failed to solve complex health disparities [4]. Many re-search designs fail to incorporate multi-level explanations of health and the re-searchers themselves do not understand many of the social and economiccomplexities motivating individual and community behaviours. Community mem-bers themselves, weary of being “guinea pigs”, are increasingly demanding that re-search address their locally identified needs. Traditional researchers often complainabout challenges in trying to recruit “research subjects”. These challenges are oftena result of community members feeling that researchers have used them and takenfindings away for the researchers benefit (e.g., scholarly papers) but the communityis left with no direct benefit [4, 17].Through the concerted efforts of practitioners and policy makers, the prevalence oftobacco-use has been reduced to 18 % in Canada over the past several decades. Al-though Ottawa has one of the lowest smoking rates in Ontario at 12 % [19], major dis-parities exist within the population as disproportionately higher rates of smoking wereobserved among drug users and individuals with addictions. In the recent PROUDstudy of Ottawa inner city residents who used multiple drugs, 96 % had smoked ciga-rettes in the past year [20]. The common assumption is that people who use drugs donot want to quit smoking; however, various studies have documented that approxi-mately 44-80 % of drug users are interested in quitting [21, 22]. According to the litera-ture, the majority of smokers (72 %) reported that they had tried to quit smokingpreviously, 69 % expressed interest in participating in a group smoking cessation pro-gram, while 82 % indicated interest in receiving a prescription for a nicotine replace-ment medication. A majority of smokers considering cessation (56 %) reported thatthey were interested in both group intervention and nicotine replacement [21, 22].Therefore, the motivation to quit smoking exists within the community, however thereis a lack of comprehensive programs designed to cater to marginalized individuals inOttawa. There is a need for an adapted, community based smoking cessation programwhich will engage the community, empower members, provide them with support toquit or reduce their tobacco use and may further encourage other healthy habits (saferdrug use, decreased use etc.). Consequently, we conducted a community-based partici-patory, peer-led action research project in the inner city population of Ottawa at a low-threshold, non-judgmental, safe space located on Murray Street in the ByWard Marketarea of Ottawa. The purpose of this paper is to describe the processes utilized in citizenor patient engagement in academic research, through our tobacco dependence manage-ment project in the inner city population in Ottawa, Canada.MethodsThe Participatory Research in Ottawa: Management and Point-of-care of Tobacco(PROMPT) research study is a Prospective Cohort Study through which we aim tolearn optimal ways to disseminate evidence-based tobacco dependence managementPakhale et al. Research Involvement and Engagement  (2016) 2:20 Page 4 of 18in the hardest-to-reach inner city population. The PROMPT study employsCommunity-Based Participatory Action Research (CBPAR) method integratedwithin a Social Network approach. Health care interventions can be most efficientlydiffused by exploiting the intrinsic properties of human social networks [23]. Infor-mation is transmitted and distributed through friends and social networks withincommunities. Insecurely housed, homeless populations of inner cities in NorthAmerica, or slums and segregated populations elsewhere, have tight-knit social net-works with unique characteristics where consistent information exchanges occurthroughout the network. We exploited these social networks of peers and partici-pants for recruitment and retention in the PROMPT study. The overall aim of thisproposed approach is to understand the barriers and facilitators of smoking as wellas to assess the lung health of participants using novel techniques, while incorporat-ing the CBPR method.PROMPT was exclusively conducted at a Community Research Centre, located indowntown Ottawa in the neighborhood of our study target population — a safe, low-threshold, and a non-judgmental space for the community peers and participants. Itwas critical to integrate and involve those who use drugs in Ottawa to better under-stand the structural, environmental and cultural norms which lead to high rates of to-bacco use within this community.The Ottawa Citizen Engagement and Action Model (OCEAM)We conceived, designed and operationalized the ten-step Ottawa Citizen Engage-ment and Action Model in the PROMPT study (Table 1). From the inception ofthe project, we actively engaged community peers, truly representative of the studytarget population. By ‘citizen engagement’, we mean the same as in ‘patient’ or ‘citizen’ en-gagement envisioned in Canada, in the CIHR-SPOR (Strategic Patient Oriented Research)[24, 25]. The ten steps of peer or public or citizen or patient engagement and action areas follows:Formulating a relevant study questionBuilding the community-based participatory research team An initial meeting washeld in April 2014 with academic and community members. The purpose of thismeeting was to share the academic researchers’ vision and community perspective.Tobacco was felt to be an important issue by the community after the PROUD studydemonstrated that 96 % of the population smokes tobacco. Hence, peer involvementin conceptualizing and designing the study question was the starting point of theproject and pivotal in strengthening our bonds between the academic team andcommunity peer researchers. Similar to PROUD, we partnered with communitygrassroot organizations, created by and for the people who use multiple drugs.Through this partnership, we invited community peers from the study target popu-lation to participate in the project. Community members were eligible to apply forthe peer researcher position if they belonged to the target study population (i.e.,with current or past drug use, ex- or current tobacco smoke and who are/werehomeless or insecurely housed). Peers were interviewed by two people (a commu-nity organization member and an academic physician) at the community researchcentre. We interviewed nine aspiring peers and selected four of them. Selection wasPakhale et al. Research Involvement and Engagement  (2016) 2:20 Page 5 of 18Table 1 The ten steps of the Ottawa Citizen Engagement and Action Model (OCEAM)Ten Steps Outcome Measures Threshold of Success Timeframe1. Formulating a relevant study question A Study question relevant to the community;and Recruitment and retention of engaged peersSuccessful selection of a relevant study questionand recruitment of 4-6 engaged peers, throughoutthe project3–6 months (more if no pre-existingcommunity ties)2. Designing study method A study design Agreed upon study method by peers and researchersthat is sufficiently rigorous; Successful implementationof study method with peers3 months3. Designing study questionnaires and Case ReportForms (CRFs)Study questionnaires and CRFs Successful design and selection of questionnaires andCRF that peers are satisfied with3 months4. Participating in recruitment Recruitment of sample Successful and efficient (within the decided accrualtime) recruitment of at least 80 % of envisionedsample size3 months of the accrual timedecided for the project5. Participating in consenting Participants written Consent Consenting of at least 80 % potential participants 3 months of the accrual timedecided for the project6. Participating in administering study questionnaires Completed questionnaires Less than 30 % missing data per entire questionnaireand CRFs3 months of the accrual timedecided for the project7. Participating in study related testing e.g.;handheldspirometry and oscillometryTesting completed Successful implementation of acceptable quality studytests with less than 30 % missing data3 months of the accrual timedecided for the project8. Participating in follow-ups Participant retention at study completion i) Peer participation in retention with follow-up ratesof at least 60 %ii) Peer (at least 1–2) and participant (at least 6–10)attendance at retention related activities such asLife-Skills Workshop of PROMPT study3 months of the follow-up timedecided for the project9. Participating in data entry, data analysis andinterpretationPeer participation in data entry, data analysis andinterpretationAt least 50 % peers participating in data entry, and25 % peers participating in data analysis andinterpretation of study results3–6 months after completion offollow-ups10. Participating in ongoing community knowledgetranslationContinuous knowledge translation through:i) Peer training (six sessions),ii) Regular project meetings with peers (at leastweekly),iii) Peer-led community knowledge forums(quarterly)i) At least 80 % peers attending all 6 trainingsessionsii) At least 50 % of peers attending weeklymeetingsiii) At least 50 % of peers participating inquarterly community knowledge forumsOngoing throughout the life of theprojectPakhaleetal.ResearchInvolvementandEngagement (2016) 2:20 Page6of18based upon genuineness of their membership to the study target population, theirexperience with the community, their individual social networks within the studytarget population, as well as their commitment towards community capacity build-ing. Commitment was determined by their potential ability to commit to the projectlong-term and their engagement within the community. Of the four selected peers,two had experience with recruiting for the PROUD project, one had worked withknowledge dissemination of PROUD and one was new to community research. Se-lected peer researchers were offered an honorarium of $15 per hour (25 % above theminimum wage in Ontario) for every hour spent working on the project for inter-views, training and other project related meetings. Successful recruitment and re-tention of at least four engaged peers was an expected outcome.Designing the study methodBiweekly meetings with academic and peer researchers were organized. In the initialphase of the study the meetings served to develop a shared vision for the project. Themeetings also ensured concerns were addressed and that there was shared decision-making and collaboration throughout all stages of the study. The study design as wellas survey development were addressed further once an agreement on the shared visionwas achieved. PROMPT, designed to be a prospective cohort study, envisioned to re-cruit 80 participants and follow them for six months. The participants were to receiveone-on-one counseling from a smoking cessation expert nurse and free and off-labelnicotine replacement therapy. Other main topics addressed at this stage included peerresearcher training, distribution or redistribution of tasks, study method details such asparticipant eligibility, different recruitment strategies, effectively utilizing peers’ socialnetworks for recruitment and retention, consent and data collection. Success of recruit-ment and retention was heavily based upon peer engagement, peers’ social networksand community outreach through neighbourhood healthcare organizations. Participa-tion and buy-in of the research peers on study design, method, and operationalizationwas key to the project. Thus, though the study design remained the same, our approachtowards implementation was modified through peer participation.Designing study questionnaires and Case Report Forms (CRFs)The initial version for the PROMPT project baseline questionnaire was drafted by theacademic researchers. The baseline questionnaire included demographic information,smoking history, drug use history, lung health related issues and clinical history rele-vant to tobacco smoking. After a series of meetings, lively discussions and debates,questionnaires were refined with the help of the peer researchers and their lived experi-ences. Suggestions and changes were made to language and the structure of surveyquestions. Culturally appropriate language editing proved to be crucial, for example, acommonly used item on most respiratory questionnaires reads ‘Feel short of breathwhen walking on level ground’ was deemed inappropriately worded by the researchpeers. Because, ‘on level ground’ has a different interpretation on the streets; duringone of our tool development meeting, the peers explained that ‘On level ground for usmeans not being under the influence of drugs or alcohol, but being level headed’! Thus,the wording was appropriately amended to address such concerns. With peers, the so-cial network questionnaire was designed and finalized with the research team, in orderPakhale et al. Research Involvement and Engagement  (2016) 2:20 Page 7 of 18to formally study social networks in our target population. The social network ques-tionnaire captured information on 13 dimensions, including names of friends or rela-tives who visit the respondent’s living space, names of those friends or relatives whomthe respondent visits or goes to pray with (at a church, mosque or temple), from whomthe respondent would borrow or lend money, from whom the respondent would bor-row or to whom the respondent would lend material goods to (food, cigarettes), andfrom whom the respondent receives or gives advice to.Finally, we came to a consensus to administer the following six questionnaires to par-ticipants at baseline: 1) demographic, detailed smoking history, drug use questionnaireand the social network questionnaire, 2) Fagerstorm Test for Nicotine Dependence(FTND) [26], 3) the BOLD core questionnaire used in the CanCOLD study, which aimsto evaluate respiratory symptoms (cough, phlegm, whistling/wheezing, shortness ofbreath) [27, 28], 4) Chronic Obstructive Pulmonary Disease (COPD) Assessment Test(CAT), an open-access disease-specific questionnaire [29], 5) EQ-5D, a well-validatedfive item open access questionnaire which measures generic quality of life [30], and 6)Patient Health Questionnaire (PHQ-8), an eight-item open-access questionnaire whichis used to establish provisional depressive disorder diagnoses as well as grade depressivesymptom severity [31]. The goal of this step was to select study questionnaires andCRFs in consensus with the peer researchers and ensure there was peer agreement.Peer training The peer researchers underwent rigorous training on different strategiesfor recruitment, consenting, administration of baseline surveys and social networkitems as well as administration of spirometry and osillometry. The spirometry trainingfollowed the CanCOLD study training guidelines [32]. The peer training was led by aRespirologist trained in pulmonary function testing (SP) and the training was adaptedto the their level of knowledge of lung function. All peers underwent six group sessionsand a one-on-one training session. The group sessions included didactic presentations,discussions, role playing and practice. The one-on-one session was focused on the prac-tice of performing the spirometry test and questionnaire administration. In addition tolung health knowledge and interviewing skills, the peer training focused on issues re-lated to consent such as; confidentiality, autonomy, privacy, the Tri-Council PolicyStatement 2, verbal and non-verbal communication; diversity of the study participants;general ethical concerns of research in marginalized populations; and health disparityliterature updates. The peers underwent pre- and post-training workshop surveys anddemonstrated that their knowledge and skills were significantly improved once thetraining was completed (Unpublished).Participating in recruitmentPeer participation in recruitment was the key in order to enroll genuine members ofthe target population. Social network based recruitment was undertaken through thewell-established social networks of peers, local healthcare agencies, drop-in centres,shelters, Ottawa Inner City Health Inc., and Ottawa Public Health outreach programs.Participant recruitment was mainly limited to the Ottawa ByWard Market downtownarea. Recruitment and enrollment started in March 2015 and eighty participants wereenrolled in the study by mid-August. Participants were eligible if they were 16 years orPakhale et al. Research Involvement and Engagement  (2016) 2:20 Page 8 of 18older, using multiple drugs other than marijuana and alcohol, currently smoked tobaccoand had been living in Ottawa for at least 3 months. Participants were excluded if theywere currently enrolled or had participated in any other smoking cessation program inthe last 30 days. Participation was entirely voluntary. Motivation and willingness to quitas well as accessibility to come to follow-ups was evaluated and determined by peersduring recruitment. The criteria for determining motivation to quit smoking and mo-tivation to follow up were left to the discretion of the peers. When participants wereknown to peers this was assessed rapidly. When participants were not known to thepeers a more lengthy discussion took place to obtain a general impression of their com-mitment before their enrollment in the project. Success at this step was evaluated by ef-ficient enrollment of the envisioned sample size.Participating in consentConsent was obtained by peers at the time of initial intake. The participants were askedto consent to completing the survey, the lung function tests and the data linkages.Through the data linkages, the PROMPT cohort would be followed prospectively forone year through the Institute of Clinical and Evaluative Sciences (ICES) which collectsongoing publicly funded health care data for Ontario residents. The research team willobtain linkable data sets to understand smoking associated health care utilizationamong participants in the PROMPT cohort. Participants were able to opt out of eitherthe lung function tests i.e., spirometry and oscillometry or the data linkages throughICES. Recruitment and the initial intake were undertaken on the same day when pos-sible to minimize missed appointments. Active involvement of peers in the recruitmentand consenting process reinforced engagement of participants in the project.Participating in administering study questionnairesBaseline surveys, testing and follow-up visits were conducted at the community re-search centre. The initial intake was led by peer researchers and included the iPad-directed baseline survey and social network items as well as the baseline lung functiontesting. The data were saved to a secure database from the iPad. Consistent with othercohort research projects, a cash honorarium of $20.00 was offered to participants aftercompleting the baseline survey. This was provided even if participants opted out oflung function testing or data linkages. Participants were informed that they could skipany of the questions if they were uncomfortable answering them. A peer-led approachto questionnaire administration was consciously adopted in order to avoid the socialdesirability bias [33].In addition, participants were enrolled in the Smoking Treatment for Ontario Pa-tients (STOP) led by the Centre for Addiction and Mental Health (CAMH) inorder to offer free and off-label Nicotine Replacement Therapy (NRT). After con-senting to the PROMPT study procedures, all participants met with a smoking ces-sation nurse from the Ottawa chapter of Canadian Mental Health Association(CMHA). The CMHA nurse, whose services were specifically hired for PROMPTstudy, was available onsite twice a week to offer one-on-one counseling and indi-vidualized NRT, available through the STOP program. The participants could meetthe nurse as frequently as requested by the participant or as deemed clinically ne-cessary by the nurse. Expired CO was also measured during these visits with aPakhale et al. Research Involvement and Engagement  (2016) 2:20 Page 9 of 18Bedfont Micro Smokerlyzer Carbon Monoxide (CO) monitor (Bedfont TechnicalInstruments Ltd, Sittingbourne, Kent, United Kingdom) for biochemical confirm-ation of the self-reported quitting. The step will be considered successful if there isless than 30 % missing data on the questionnaires.Participating in study related testing e.g. handheld spirometry and oscillometryPeers administered lung function testing which included point of care hand-held spir-ometry and oscillometry. These were completed before and after administration of200ug of salbutamol with an aero chamber. Participants with abnormal spirometryand/or oscillometry were encouraged to follow-up with their primary healthcare pro-vider and referred to the Ottawa Hospital for further investigations when appropriate.The step will be considered successful if there is less than 30 % missing data on studymeasurements.Participating in follow-ups and retentionIn addition to the follow-up with the smoking cessation nurse, all participants were en-couraged to attend monthly follow-up visits at the project site and received $25 permonthly visit. The short monthly follow up survey was administered either by the pro-ject manager or peers as per availability. Participants also dropped in at the ‘FrenchToast Friday’ breakfast club, hosted regularly at the community research centre in col-laboration with our partner community organizations. Close social network of peersencouraged participants’ engagement in the project and thus promoted follow-ups. Wediscussed challenges (e.g., when a participant was under influence of alcohol or drugsat the follow-up appointment) and opportunities (e.g., contacts of participants at theorganization with harm reduction activities in the town) to improve follow-up rates atour regular and ad-hoc peer-meetings. The goal is to achieve at least a 60 % follow-uprate at the end of the six months.Peer-led weekly life skills workshops To attempt to further engage study partici-pants, weekly, peer-led life-skills workshops are organized and conducted. Theworkshops are voluntary and all study participants are invited to attend. Some ofthe organized workshops include: financial literacy, banking, cooking, hepatitis Ceducation, arts, and pet care. These are peer-designed and peer-led workshops andoccasionally involve the assistance of volunteers from the general community. Atthe end of the project, participant satisfaction, knowledge, skills, and self-efficacydata will be collected. Currently, the life-skills workshops are being attended by ap-proximately 6–10 participants and 1–2 peers.Participating in data entry, data analysis and interpretationPeers were trained in data-entry at the beginning of the project. Ongoing peertraining involving a cyclical and iterative process is being used to train peers ondata-analysis and interpretation. Peer involvement in data analysis and interpret-ation was deemed important in order to derive meaningful and relevant conclu-sions from the data. One of our peer during a meeting stated that, “We are theend users of the results and hence, we must be involved in the analysis andPakhale et al. Research Involvement and Engagement  (2016) 2:20 Page 10 of 18interpretation so that the results and outcomes are relevant to us.” Currently, twopeers (50 %) are participating in data entry, data analysis and data interpretation.Participating in ongoing community knowledge translationKnowledge translation is an ongoing aspect of the study. This continuous knowledgetranslation is achieved through peer training (six sessions), regular project meetingswith peers (at least weekly), participant engagement and peer-led community know-ledge forums (quarterly).Integrated, ongoing knowledge translation Key knowledge translation and commu-nity capacity building activities are: ongoing peer training, in-service training, debrief-ing after recruitment, consenting or administration of questionnaires and weekly orbiweekly meetings to share our experiences with the progress of the project.Community Knowledge Forums We are organizing quarterly, peer-designed, peer-led‘Community Knowledge Forums’ where all stakeholders, partners, funders, peers andparticipants partake in a lively discussion. To date, three such quarterly forums havebeen conducted with excellent response and enthusiasm from the peers and partici-pants (May and Sept 2015; and Jan. 2016). We involved and invited community part-ners and stakeholders to the forums, including staff and key members fromneighbourhood community health centres, neighbourhood drop-in centres, shelters,local grassroot organizations, Ottawa Public Health, and Ottawa Inner City Health Inc.During the lively discussion amongst participants and audience members at our firstcommunity knowledge forum, a Ottawa Public Health nurse, Ms.E. stated that, “I amalways conflicted as to when is the best time to discuss ‘tobacco issues’ with my clientswhen they have so many other things going on” and one of the panelist, a PROMPT pro-ject participant, DB, spontaneously said, that ‘Anytime is a good time!’. And he added,that, “We all are fed up with smoking tobacco because of the day-to-day challenges, butit is very hard to quit. Any help is always welcome!” During our second communityknowledge forum, one of our panelists, a PROMPT project participant, JB confessedthat, “My chronic back pain is so much better now that I am smoking only 2-3 cigarettes,I cannot wait till I get over with this.”Posters, news-items and manuscript writing The principal investigator, research co-ordinator and peer researchers along with community partners have formed a writingcommittee to create materials for the project in print. To date our writing group hascreated hand-outs for the forums, news-items for local media, submitted two confer-ence abstracts and are currently working on two manuscripts.Community capacity building activities and focus groups at the communityresearch centre To build community capacity and maximize the use of the commu-nity research centre, we are using the space to conduct focus groups on lung healthand health literacy. In an attempt to further understand lung health of the study popu-lation, a 2-hour peer-led focus group was organized with 8–10 participants from ourstudy population to discuss lung health and research priorities. The participants for thePakhale et al. Research Involvement and Engagement  (2016) 2:20 Page 11 of 18focus group were selected from the PROMPT study population based on their lungfunction (participants fulfilling the diagnostic criteria for Chronic Obstructive Pulmon-ary Disease (COPD)). Participation in the focus group was voluntary and consent wasobtained at the time of participation. The two peers who led the focus group and theeight participants were compensated with a cash honorarium of $60.Another focus group was conducted with participants from the same target popula-tion as our study, specifically focusing on injection drug use, in Feb 2015 to understand“Harm Reduction in Ontario’s Federal Prisons (Ottawa)”. This focus group was led bythe department of Criminology, at Toronto’s Ryerson University, in collaboration withpeers from the Prisoners with HIV/AIDS Support Action Network (PASAN), alongwith the Canadian HIV/AIDS Legal Network and the Native Youth Sexual Health Net-work. All five participants received $30 honorarium for their time, food and refresh-ments at the session, and public transit tickets.On all Friday mornings, in collaboration with local community organizations, we hosta ‘French Toast Friday’ breakfast, where all are welcome from the community for awarm breakfast, interaction with familiar faces and also information and educational re-sources. An Ottawa Public Health nurse is usually in attendance at these breakfast ses-sion to deliver some informal health awareness, educational sessions or conductworkshops. Also, a POPP Party (Peer Overdose Prevention Program) was conducted inFeb 2015 to educate opiate users and to promote use of Naloxone Kits created by theOttawa Public Health office. Between the POPP Party and the ‘French Toast Friday’breakfast sessions, thus far, fifteen Naloxone kits have been distributed to communitymembers at the research centre within one year.Peers and participants organized a Thanksgiving dinner and a Christmas dinner inOctober and December 2015, respectively. On both these occasions, the project partici-pants and peers did the preparation, grocery shopping and cooking. A participant in-volved in cooking the dinner on Thanksgiving said that, “It is so nice for me to be here.I am here since 8 AM. If not for here, I would be looking for drugs and what not. I feelso great!” A participant who did cooking for the dinner in December said that, “I havebeen getting night mares about this day since last week and I am preparing myself for it.For all last week, I did not do any crack or any drugs. I had to be ready for today man!”DiscussionThe PROMPT study has operationalized a program designed to respond to health in-equity in tobacco use, by utilizing community-based participation. Despite almost a100 % tobacco use rate, we still lack knowledge of COPD prevalence or the effects ofmulti-drug use on COPD, primarily because, the most marginalized populations havenot been included in the major national cohort studies [27].The ten-step Ottawa Citizen Engagement and Action Model (OCEAM) is being suc-cessfully conceived, designed and operationalized in the PROMPT prospective cohortstudy. Each step has defined objectives and outcome measures. The PROMPT study isdesigned to support inner city residents, in order to quit or reduce smoking tobacco,encourage participation within their community, and to further build their individualcapacity.In 1978, the World Health Organization’s Alma-Ata Declaration first articulated thegoals of community participation and equity, with subsequent extension toPakhale et al. Research Involvement and Engagement  (2016) 2:20 Page 12 of 18empowerment in the Ottawa Charter and Jakarta health promotion declarations. Muchresearch has accrued on the interconnectedness of psychological empowerment, levelof participation and a sense of community (i.e., people’s identification and bonding withtheir community network, social networks or place of residence) [34]. In the PROMPTstudy, CBPAR embedded in the social network-based approach was adopted as a frame-work to conduct our peer led tobacco dependence management program. This ap-proach allowed for recruitment of this difficult-to-reach and difficult-to-treatpopulation. Building upon the PROUD study procedures [20], we operationalized apeer-led prospective cohort study design. The collaboration with the inner city popula-tion of Ottawa was facilitated by our partnership with the neighbourhood health careagencies and grassroots organizations serving the same target population. This was agreat opportunity to strengthen relationships between the academic community andthe inner city population and to further build community capacity and trust.Effective interventions ensure supportive environments are created by engaging keystakeholders and community leaders. Supportive environments are essential for thesuccess of any health promotion program or strategy [35]. Furthermore, there is evi-dence to show that community member skill development is essential to a health pro-motion program. These strategies are most likely to be successful if combined withother strategies such as providing increased access to goods, products, or services. Forexample a review of health promotion strategies addressing high-risk behaviours put-ting youth at risk for HIV/AIDS found that the key to a successful program was provid-ing motivations to change behaviour such as peer education, support, whilesimultaneously providing products and services needed to achieve the behaviourchange. It has been found that the most effective interventions involve a combinationof health promotion strategies occurring at the personal, community and structurallevel [35] Our rigorous peer training, ongoing meetings, and debriefings proved benefi-cial in building skills in our community peers (unpublished data). Increasing knowledgein peers, increases their self-confidence, enhances empowerment and promotes com-munity capacity building (unpublished data). We are creating permanent mentors,peers and project participants alike, through the process of ongoing knowledge transla-tion. Peer satisfaction, knowledge, skills and self-efficacy will be measured at the end ofthe project.Introduction of health interventions to nominated friends of individuals was found tobe the best recruitment strategy for the PROMPT study. The most important benefit ofthis method is scalability, because it can be implemented without mapping the socialnetwork [23]. This community-based project utilizes the preexisting and deeply en-grained social networks of this community. This strategy has the potential of producingthe greatest cascades or spill-over effects and maximal population-level behaviourchange. Thus, to encourage the uptake of this tobacco dependence intervention, thePROMPT study has operationalized this social network-based recruitment and reten-tion strategy for maximum efficiency.The weekly skills workshops created and led by our peers, are useful building blocksfor community capacity building and improving self-confidence in peers and projectparticipants. We are currently measuring the impact of and participation in these work-shops. Several reviews suggest that creating supportive conditions is essential in orderfacilitate any health promotion effort. [23] This may include implementing a variety ofPakhale et al. Research Involvement and Engagement  (2016) 2:20 Page 13 of 18actions that promote supportive conditions at the structural (policy), social (includingcommunity) and individual levels. Therefore, to successfully alter high-risk behaviours,the underlying social and economic conditions must be addressed [35]. Key factors tothe success of such interventions are the ability to access support, including the avail-ability of peer counseling, outreach services and skills training.Empowerment is an action-oriented concept with a focus on removal of formal or in-formal barriers, and on transforming power relations between communities, institu-tions and government [34]. Empowerment includes both processes and outcomes, withempowerment of marginalized people being an important outcome in its own right,and also an intermediate outcome in the pathway to reducing health disparities and so-cial exclusion [34]. Therefore, within the context of this “pathways to health frame-work” we have operationalized a comprehensive, ten-step citizen engagement andaction model for a tobacco dependence management research program, which involvesproviding access to smoking cessation aids (access to resources) along with various life-skills training workshops (empowerment) for participants to build community capacity,create structural and social conditions to support the development of personal skills,empower the members involved and to provide support to participants in a low-threshold and safe community setting.Challenges of CBPAR researchThere are many challenges in operationalizing such community endeavors. Sustain-ability due to lack of ongoing funding is an ongoing challenge for community-based research [36, 37]. The challenges are partly because the process takes muchmore time than “traditional” academic research as all community health care part-ners and community members need to understand and agree on the issues. Build-ing trust and engagement, especially with the most marginalized populations, isvery time consuming because historically these populations have been disenfran-chised by academicians, policy makers, governments and general population [4].We have been working on building relationships with community members overseveral years (one year for The PROMPT study and over three years in thePROUD study). The time factor is important from the academic researchers’ pointof view considering implications for academic tenure and promotion. From thecommunity perspective, the implications for the time needed to address the issueunder study are significant. This is because, usually community problems arecurrent and solutions are complex and occasionally the concept of a solution couldbe perceived as farfetched or impossible in their minds. Changing communitydynamics due to in- and out-migration and changing academic personnel due topromotions, transfers or retirements are looming threats to the success ofcommunity-based action projects. There is a need to reflect on the challenges cre-ated by changing personnel when a lengthy relationship between the communityand academic partners is required to undertake action research. This is simply be-cause all new and old partners may not have the same needs or outlook [37]. Allpartners may have different perspectives in a lengthy, evolving relationship. Thus,over time expectations might change and there may not be the capacity to over-come such dynamic challenges in the project. We did encounter the issue ofPakhale et al. Research Involvement and Engagement  (2016) 2:20 Page 14 of 18changing academic personnel however, we persevered through the rough transition.Through CBPAR research the goal is to facilitate ongoing recruitment, create part-nerships with key community members, anticipate potential difficulties throughprior experiences and find strength in collaboration and team building throughtraining and knowledge translation. Our team persevered despite all the abovementioned challenges and still managed to create a supportive environment inwhich peers and community members could thrive and remain engaged in theproject.Benefits of CBPAR researchEncouraging community feedback and peer participation throughout every phase of theproject has helped the research team better understand the needs of the community.Furthermore, it provided the staff with a better understanding of the services and sup-port required by this specific population in order to address their issues e.g. tobacco de-pendence. Through this approach, the research staff have gained a deeperunderstanding of the relationship between smoking and the social determinants ofhealth which affect this community at large. The participatory approach utilized hasallowed for knowledge exchanges between both the peer researchers and the academicstaff. The academic staff continually gained a better understanding of the inner citycommunity within Ottawa, specifically around communication. The academic ‘jargon’is a deterrent in the communication process and most often not required for effectivecommunication. Importantly, cultural sensitivity is utmost important in spoken andun-spoken communication; which was learnt by the academic staff by forming closerand collegial relationship with community peers. The peer researchers have gained gen-eral knowledge related to skills required for research participation, accountability, timemanagement and specific knowledge related to lung function testing and the impact ofsmoking on health outcomes. The peers exceeded our expectations about their profes-sionalism, articulateness and their unwavering dedication towards betterment of thismost marginalized population. E.g. one of our peer at a community knowledge forumsaid, ‘No one is a drug addict or homeless by choice, and no one wants to be there. Weneed help, not hand-outs!’Future plansThe future plans for the project and for the community research centre are being dis-cussed at our regular peer meetings. The research team and peers have formed a Com-munity Advisory Committee (CAC) comprising of members from our targetpopulation and keen key representatives from the neighbourhood healthcare agencies.The CAC is responsible for envisioning future projects and overlooking current pro-jects at the community research centre. There is diversity in the CAC membership,with regards to sexual orientation, indigenous status and francophone representation.PROMPT is currently following 80 participants with two engaged peers. Our partner-ship with peers and neighborhood organizations is flourishing and has givien rise to anew grassroot organization by our peers to further their mission of harm reduction, ad-vocacy and community capacity building: ONPAHR (Ottawa Network of Peers Actingfor Harm Reduction).Pakhale et al. Research Involvement and Engagement  (2016) 2:20 Page 15 of 18ConclusionThe PROMPT study demonstrated the feasibility of using community-based participa-tory action research (CBPAR) embedded in social network-based approach to build en-gagement and trust in the most difficult to reach and hardest to treat inner citypopulations. The ten-step Ottawa Citizen Engagement and Action Model(OCEAM) was successfully operationalized. The PROMPT study will continue tofollow eighty PROMPT participants for six months in order to understand the bar-riers and facilitators of smoking as well as optimal ways to manage, reduce, andquit smoking. Rather than the heavily ‘acute-care’ or ‘disease-focused’ healthresearch and health policy, focusing on disparity and need of different sub-population groups is urgent [4, 17]. Community-based research emphasizesecological model of health encompassing physical, mental, biomedical, social, eco-nomic, cultural, historical, and political factors as determinants of health and dis-ease [17]. We have successfully demonstrated that the strengths within the innercity community could be harnessed to tackle issues such as tobacco addiction.Through this research, we have made attempts to improve self-confidence and en-hance empowerment in peers and participants, and in turn build community cap-acity. Thus, this strategy is best suited for tackling health inequity and hence,serves the greater purpose of health justice. However, our efforts should always beguided by wisdom, compassion and loving kindness. Importantly, such holistic ap-proaches to chronic diseases such as tobacco dependence are urgently needed [38].Ethical approvalThe study was approved by the Ottawa Hospital Research Ethics Board; written consentwas obtained from all participants.Competing interestsThe authors declare that they have no competing interests.Authors’ contributionsSP was involved in the conception of the methodology, design, implementation, data analysis, interpretation andwriting. TK was involved in the implementation, data collection, data entry, data analysis, interpretation and writing. TRand KF were involved in the concept, design, implementation, data collection, data analysis, interpretation and writing.JH was involved in the implementation, data collection, interpretation and writing. MT and WM, DP and RB wereinvolved in the conception of the methodology, interpretation and writing. All authors read and approved the finalmanuscript.AcknowledgementsWe are indebted to all our project participants and peers for believing in this project and participating wholeheartedly; we are very grateful for the support of Ottawa Inner City Health Inc. for their administrative support whichallowed us to have petty cash flow for peer and participants’ honorariums; we value collaboration with all ourneighborhood community (health) organizations; and lastly, our heartfelt thanks to Dr. Ian Graham, Senior Scientistand a sociologist, Ottawa Hospital Research Institute, Ottawa, Canada for his valuable and constructive feedback andcomments on the manuscript; with Dr. Graham’s input, quality of our manuscript improved significantly.FundingThe Champlain Local Health Integration Network (LHIN), Ottawa, Canada; the Department of Medicine, divisions ofRespirology and Cardiology at the Ottawa Hospital, Ottawa, Canada.Author details1The Ottawa Hospital, University of Ottawa, Ottawa, Canada. 2The Ottawa Hospital Research Institute (OHRI), Universityof Ottawa, Ottawa, Canada. 3University of Ottawa, Ottawa, Canada. 4Community research peers, Oasis, Sandy HillCommunity Health Centre, Ottawa, Canada. 5Oasis, Sandy Hill Community Health Centre, Ottawa, Canada. 6CanadianMental Health Association, Ottawa Branch, Ottawa, Canada. 7Ottawa Inner City Health Inc., Ottawa, Canada. 8BritishColumbia CDC, University of British Columbia, Vancouver, BC, Canada. 9University of British Columbia, Vancouver, BC,Canada.Pakhale et al. 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J Urban Health. 2006;83(6):1022–40.38. Pakhale S, Folan P, Neptune E, Sachs D. Retail Tobacco Sale in the Community. Should Pharmacies Sell TobaccoProducts? Annals ATS. 2015;12(8):1116.•  We accept pre-submission inquiries •  Our selector tool helps you to find the most relevant journal•  We provide round the clock customer support •  Convenient online submission•  Thorough peer review•  Inclusion in PubMed and all major indexing services •  Maximum visibility for your researchSubmit your manuscript atwww.biomedcentral.com/submitSubmit your next manuscript to BioMed Central and we will help you at every step:Pakhale et al. Research Involvement and Engagement  (2016) 2:20 Page 18 of 18


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