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Heard and valued: the development of a model to meaningfully engage marginalized populations in health… Snow, M. E; Tweedie, Katherine; Pederson, Ann Mar 15, 2018

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RESEARCH ARTICLE Open AccessHeard and valued: the development of amodel to meaningfully engagemarginalized populations in health servicesplanningM. Elizabeth Snow1* , Katherine Tweedie2 and Ann Pederson3AbstractBackground: Recently, patient engagement has been identified as a promising strategy for supporting healthcareplanning. However, the context and structure of universalistic, “one-size-fits-all” approaches often used for patientengagement may not enable diverse patients to participate in decision-making about programs intended to meettheir needs. Specifically, standard patient engagement approaches are gender-blind and might not facilitate theengagement of those marginalized by, for example, substance use, low income, experiences of violence, homelessness,and/or mental health challenges—highly gendered health and social experiences. The project’s purpose was to developa heuristic model to assist planners to engage patients who are not traditionally included in healthcare planning.Methods: Using a qualitative research approach, we reviewed literature and conducted interviews with patients andhealthcare planners regarding engaging marginalized populations in health services planning. From these inputs, wecreated a model and planning manual to assist healthcare planners to engage marginalized patients in health servicesplanning, which we piloted in two clinical programs undergoing health services design. The findings from the pilotswere used to refine the model.Results: The analysis of the interviews and literature identified power and gender as barriers to participation, andgenerated suggestions to support diverse populations both to attend patient engagement events and to participatemeaningfully. Engaging marginalized populations cannot be reduced to a single defined process, but instead needs tobe understood as an iterative process of fitting engagement methods to a particular situation. Underlying this processare principles for meaningfully engaging marginalized people in healthcare planning.Conclusion: A one-size-fits-all approach to patient engagement is not appropriate given patients’ diverse barriers tomeaningful participation in healthcare planning. Instead, planners need a repertoire of skills and strategies to align thepurpose of engagement with the capacities and needs of patient participants. Just as services need to meet diversepatients’ needs, so too must patient engagement experiences.Keywords: Patient engagement, Healthcare planning, Marginalized populations, Equity, Gender* Correspondence: bsnow@cheos.ubc.ca1Centre for Health Evaluation & Outcome Sciences (CHÉOS), University ofBritish Columbia, St. Paul’s Hospital, 588 - 1081 Burrard Street, Vancouver, BCV6Z 1Y6, CanadaFull list of author information is available at the end of the article© The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate 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.Snow et al. BMC Health Services Research  (2018) 18:181 https://doi.org/10.1186/s12913-018-2969-1BackgroundRecently patient engagement has been identified as apromising strategy for supporting health services planningby health organizations in British Columbia [1, 2], Canada[3–5], and internationally [6–8]. Patient engagement, inthis context, refers to processes through which patients’values, needs, and preferences inform health servicesplanning with the intended goal of making health servicesmore accessible, appropriate and acceptable to patients[14]. We believe that this process does not bring healthservices closer to patients’ needs unless the process ismeaningful to the patients, meaning patients’ values, pref-erences, and needs are heard, understood, and valued byhealth service decision makers and actually affect theservices and policies being developed.Often the context and structure of patient engagementprocesses may systematically exclude marginalized popu-lations from participating in a meaningful way or partici-pating at all. Most patient engagement processes consistof “activating” patients, i.e., teaching them to participatein healthcare discussions and then inserting them into ahealthcare planning process to provide a “patient” per-spective. This approach (and other traditionally-usedformats of patient engagement, such as advisory councilsand deliberative processes) privileges participation stylessimilar to those of health service planners. Unfortu-nately, these processes may exclude groups of patients,such as women who are low-income, sexual minorities,and sex workers, who face various barriers to healthservices, yet may have poor mental and physical healthand make frequent use of healthcare. Universalistic,“one-size-fits-all” approaches may not enable diversepatients to participate in decision-making about programsand policies intended to meet their needs or enableplanners to develop interventions with diverse patients.We came to this work with a commitment to reducinghealth inequities, many of which arise from the veryconditions that marginalize and disempower some womenin Canada [6, 9]. The goal of this project was to develop amodel to meaningfully engage women in health servicesplanning, with a focus on including a diversity of womenwhose voices are typically excluded from such processes.As researchers and program developers in women’shealth, we were concerned that standard patient engage-ment approaches were gender-blind [10, 11], assuminggender does not influence participation in, or results of,engagement [12, 13]. Therefore, we felt such processesmight not facilitate engagement of women, particularlythose who were marginalized by issues such as substanceuse, low income, experiences of violence, homelessness,and/or mental health challenges.Using a qualitative research approach, we reviewedliterature and conducted interviews with self-identifiedfemale community members and with health servicesplanners regarding engaging marginalized populationsin health services planning. We used these initial inputsto create a model for engaging patients and a planningmanual which we then piloted in two clinical programsundergoing health services planning. We refined themodel and revised the planning manual based on theexperiences and findings from the pilot projects andcreated an online learning module to disseminate thesetools.MethodsPhase ILiterature reviewWe reviewed reports of patient engagement initiativesthat explicitly sought to engage diverse or vulnerablepopulations to describe challenges and strategies tomeaningfully engaging marginalized populations. Abelsonet al.’s three criteria were used to select initiatives for thereview: 1) participants received information about anissue; 2) participants had opportunities to discuss the issueamongst themselves and potentially with decision makers;and 3) there was an explicit process for collecting partici-pants’ input [14].We searched for relevant articles in Cumulative Indexto Nursing and Allied Health Literature (CINAHL) andMedical Literature Analysis and Retrieval System Online(MEDLINE®) using the terms: patient engagement, patientparticipation, user designed, community engagement,decision making; gender, women, marginalized, vulnerable,social justice, healthcare, health services, consumer partici-pation, patient participation, vulnerable populations, women,disabled persons, drug users, emigrants and immigrants,homeless persons, sex workers, transients and migrants,program development, planning techniques, health servicesresearch, advisory committees, service(s), and program(s).We searched for additional articles and grey literaturethrough reference lists of selected articles and a web search.The literature search was conducted in 2012 and updated in2013. We did not use a historical date cutoff, yet we did notfind relevant literature published prior to the 1990s. A totalof 61 articles were identified.Articles were included if the engagement initiativeaimed to improve health services for populations whoneeded additional or unique health service supports andthe engagement strategies sought to overcome exclusionarycharacteristics of traditional engagement processes. Articleswere excluded if engagement referred to patients partici-pating in their own healthcare; engagement was for thepurpose of research instead of shaping a policy, program,or system; if the article did not describe the engagementprocess; or if the project took place in a developingcountry.In total, 17 peer-reviewed articles were ultimately exam-ined, supplemented by findings from a literature review onSnow et al. BMC Health Services Research  (2018) 18:181 Page 2 of 13consumer participation and diversity performed by theNational Resource Centre for Consumer Participation inHealth in Australia [15]. No other grey literature meetingthe inclusion criteria was found, likely due to insufficientincentives for health agencies to document and publiclyshare such processes, and barriers to making suchdocuments available (e.g., privacy and permissions; fewwebsites to host reports).To identify themes, projects were categorized by levelof engagement based on the International Association ofPublic Participation (IAP2) spectrum of public participation[11], and examined for trends in the purpose of engagingpatients, strategies used to engage participants, andsuccesses and challenges in their engagement of diverseand marginalized populations.Focus groups and interviewsConcepts identified through the literature review wereinterrogated through 1) semi-structured interviews andfocus groups with female community members to explorehow they would want to participate in health servicesplanning and how they would define effective patientengagement (see Additional file 1 for interview and focusgroup guides) and 2) semi-structured interviews with healthservice planners and researchers who had experienceengaging patients, particularly people whose voices havenot traditionally been heard in health services planning (seeAdditional file 2 for interview guides). Thirteen womenwere recruited through community-based agencies workingwith diverse populations, including women who were: preg-nant and/or new parenting mothers affected by substanceuse and/or violence; new immigrants to Canada; Indigen-ous and/or had a history of incarceration. Nineteen healthservices planners, managers, coordinators, and people whofacilitated patient engagement processes were recruitedfrom a health authority, as well as contacts in other localagencies recommended by initial interviewees.A grounded theory approach [16] was used to examineinterview content and modify interview/focus group ques-tions and processes in an iterative fashion. Although weoriginal intended to interview more community members,through continual comparative analysis of the data welearned the concept of engaging in health services planningwas very abstract and not necessarily perceived as relevantto community members’ experiences. Interviews withhealth service providers further confirmed that engagingpatients regarding abstract healthcare concepts providesfew opportunities for patients to contribute unless they doconsiderable work in preparation for participation. Thus,fewer women were interviewed than initially planned.Data analysisOur data analysis sought to identify strategies for plannersto engage marginalized patients in a meaningful way, bothpertaining to specific levels of engagement using the IAP2Spectrum of Public Participation, as well as trends cuttingacross all levels of engagement.As interviews were completed, they were transcribedverbatim and uploaded into QSR NVivo qualitative ana-lysis software [17]. The coders [MES and KT] debriefedafter interviews to discuss themes, compare emergentideas against the emerging model, and identify and pursueemergent lines of inquiry. The coders independentlycoded the data using both a priori codes based on stage ofthe engagement process (e.g., recruiting participants) andemergent codes using a constant comparative approach.Subsequently, the two researchers compared codes; differ-ences were discussed and resolved and they wrote memosto document the coding process.Developing the modelThe first iteration of the model (see Fig. 1) was developedby synthesizing the literature and themes from interviews/focus groups into a visual model to guide planning andFig. 1 Initial modelSnow et al. BMC Health Services Research  (2018) 18:181 Page 3 of 13implementing patient engagement. The emergent modelidentified systematic barriers and power dynamics em-bedded in patient engagement processes, as they relateto the social location of their particular population ofinterest. It was intended to guide planners to minimizethese barriers and empower patients in the engagementprocess. Core elements included: a readiness assessment;strategies for identifying a suitable engagement method;planning engagement events; conducting gender-sensitiveengagement; and evaluating the effect of engagement onplanning. A planning manual was created to supportplanners to use the model.The draft model was presented to researchers, policy-makers, and health services planners at three events.Although these presentations generated interest, participantsoffered little substantive feedback on the model. Patientparticipants also found it difficult to provide feedback.Indeed, patients interviewed indicated that “patientengagement” is an abstract concept disconnected to theirhealthcare experiences. Our findings suggest that askingpatients to engage with such issues puts an additionalburden on them to learn about the abstract concept, andmay diminish the importance of patients’ values, prefer-ences, and lived experience. Moreover, as the model isintended to put the onus on healthcare planners to learnmore about issues of marginalization and to create anengagement process that is sensitive and appropriate tomarginalized patients, we chose to not elicit feedbackfrom patients on the model as we had originally planned.Phase I of the project was originally intended todevelop standards for evaluating patient engagement;however, few articles included evaluation of patientengagement interventions. Some evaluated process, suchas people satisfaction with the engagement process.However, evaluations of outcomes of patient engagement(i.e., effect of patient engagement on actual health servicesor policy) were not found in the literature. Developingstandards by which to evaluate without a concrete patientengagement project in mind also proved to be an abstractconcept that was difficult to assess for the women weinterviewed. However, at the most basic level, patientsinterviewed in Phase I noted they would consider patientengagement to be successful if something changed basedon their input.Phase II: Piloting the modelThe model was piloted in two clinical programs. A PublicHealth program used the model to engage 70 patients toinform service planning of nurses providing home visitsto pregnant and new parenting mothers in vulnerablefamilies. A primary care program used the model toengage 9 patients in the redesign of a chronic diseaseeducation program provided in both English and Punjabi.In both pilots we worked with planners from clinicalprograms to apply the model to their programs, andobserved which elements of the model and planningmanual worked well and what was unclear, and notedsuggestions for improvement. We developed a seconditeration of the model based on the experiences of thetwo pilot projects (see Fig. 2).Research ethicsThis project received research ethics approval from theFraser Health Authority Research Ethics Board. Partici-pants in Phase I interviews and focus groups and Phase IIpatient engagement sessions signed informed consentforms. Identities of participants were kept confidential, withonly the research team having access to audio recordingsand transcripts.ResultsLiterature review findingsTable 1 summarizes findings of the literature review bylevel of engagement from the IAP2 Spectrum of PublicParticipation [11] and three aspects of engagement:purpose of engaging; characteristics of the participantsthey succeeded in engaging; and strategies used to engageparticipants. The “inform” level of engagement from theIAP2 spectrum was excluded because it does not meetAbleson et al.’s [14] three criteria for engagement indecision making (i.e., participants did not have opportunityto discuss the issue nor is input collected from participantsin the “inform” level).We identified trends on engaging marginalized peopleand trends within the various categories of engagement.Together they provide information about supportingmarginalized populations to: 1) attend patient engage-ment events; and 2) participate meaningfully in theseprocesses.Attending patient engagement eventsPatients who participate in patient engagement mayexperience barriers to participating and incur directcosts (e.g., childcare and transportation) and opportunitycosts (e.g., missed social or work opportunities). Suchcosts increase when patients are involved in extensiveengagement experiences. Engagement facilitators mayattempt to minimize the costs of participatinghowever,minimizing costs and barriers is not sufficient. Participa-tion costs are relative to an individual’s social location,including, for example, gender, income, and employmentstatus, which in turn shape the resources they can drawfrom to participate.Authors noted all engagement processes require timecommitment from participants, though amount of time,and other direct and indirect costs of participating, varyacross engagement processes. One-time events drew alarge number of participants from diverse populationsSnow et al. BMC Health Services Research  (2018) 18:181 Page 4 of 13[18, 19], while many people did not participate in ordropped out of engagement processes involving recur-ring events, citing time and responsibility commitmentsas barriers [18, 20–22].Barriers also varied by dimension of marginalizationand participant’s life context. Low socioeconomic statusseemed to be associated with greater barriers to partici-pation, due to higher opportunity costs on their abilityto meet basic needs (e.g., accessing free meals, shelter,and temporary work).The setting of engagement events also presentedbarriers. Some participants were physically incapable ofgetting to events due to disabilities [23]. Others feltuncomfortable in formal and unfamiliar spaces, such asacademic setting [24]. In other cases, discomfort camefrom distrust of institutions associated with the location(such as criminal justice systems) [19]. Finally, languagewas a barrier for many, and interpreter or translator costsoften are seldom covered by engagement budgets [25].A primary strategy to help marginalized people attendengagement events was to reduce the cost of participatingby providing childcare, transportation stipends, honoraria,and food [18–21, 25, 26]. Some processes were flexibleabout meeting locations and times [20–22, 25]. Severalprojects sought to overcome participation barriers byworking with community groups [20, 23, 26, 27] whichhelped facilitators gain access to marginalized groups andallowed them to learn about the community’s needs andnecessary considerations for successful engagement [15].Some successes in more intense participation camethrough engagement processes built into interactionsbetween patients and practitioners, particularly incommunity-based services with recurring interactionwith patients [28–31]. In these processes, there were noadditional costs to attending an engagement eventbeyond seeking care and patients could directly benefitfrom changes to services. The success in engagingvulnerable patients may be due to patients’ trust in theprovider and reduction of access barriers however, byrelying on current patients for participation, such processesinherently exclude those not already accessing services.Projects focused on engaging women used a variety ofstrategies to overcome barriers such as providing childcareand having flexible meeting options to accommodatewomen’s schedules [18, 19, 22, 25, 29].Patients also need motivation to participate. Theliterature suggests that people need more motivation toattend processes requiring higher commitment andparticipation costs. Generally, people are motivated byissues relevant to their lives or the belief they will benefitFig. 2 Final modelSnow et al. BMC Health Services Research  (2018) 18:181 Page 5 of 13Table1SummaryofLiteratureReviewFindingsbyLevelofEngagementCategoryofEngagement(IAP2)PurposeofEngagingEngagementParticipantsEngagementStrategiesReferencesConsult▪Identifysystem-levelhealthcaregapsandbarriersexperiencedbyparticipants▪Collectparticipants’ideasforimprovingservices/policies▪Informdevelopmentofevaluation,collectevaluationdata▪Usersofvarioushealthcaresystemfromdiversebackgrounds▪Usersofspecificcommunity-basedservices▪1-dayin-personevents▪Participantssharedhealthexperienceswitheachotherthroughvariousdiscussionformats(e.g.worldcafé,interpersonalconversations,writinganddrawingonposterboards)▪Solicitedideasbyaskingwhatthesystemiscurrentlylike,andhowitshouldideallybe▪Participantssharedideasabouthowhealthcarecouldbemadebetter[15,18,19,32,42]Involve▪Createmethodstocollectconcerns/ideasofspecificpopulationsaboutahealthservice/policy▪Informdecisionmakersaboutspecificcommunities’values,preferences,andneedsregardingbroadersystem-levelissues▪Informmanagementatfacilityabouttheirpatients’values/preferences/needs▪Communitiespreviouslyexcludedoroppressedbyhealthcarestructures,fromavarietyofbackgrounds▪Peoplewhosevoiceswerehistoricallyignored▪Patientsparticipatedinthedevelopmentofcommunicationstructuresthroughfocusgroupsandsurveys▪Engagedcommunitygroupstolearnaboutfacilitatingthepatients▪Createdinformationalmaterialtoenhanceparticipantsunderstandingoftheissues▪Ongoingdialoguethroughvariousformatstoidentifyconcerns/hopes,andinformdecisionmakers[20,23,28,29]Collaborate▪Adviseonplanningofaninitiativeforaspecificpopulation▪Advisehealthauthorityhowtoimproveservicesforaparticularpopulation▪Adiverserangeofparticipants,includingmembersofthepopulationtargetedbytheinitiative,andpeoplewhowerepersonallyorprofessionallyinterestedintheissue▪Createdanadvisorypanelorcommittee▪Participantsattendedregularmeetings▪Providedopportunitiesforparticipantstolearnabouttheissue▪Participantsprovidedinformation,adviceandfeedbackabouttheinitiative.Throughtheprocessthefacilitatorsrespondedtothisinput,creatingacycleoffeedbackandresponseovertime[22,24–27,30]Empower▪Planandimplementacommunityhealthpromotioninitiative▪Diverserangeofparticipants,includingmembersofthepopulationtargetedbytheinitiative,andpeoplewhowerepersonallyorprofessionallyinterested.▪Createdapartnershipwiththeparticipants▪Supportedpartnerstoplanactivitiesandevaluationcriteriaoftheproject▪Providedlearningopportunitiesforparticipants[21]Snow et al. BMC Health Services Research  (2018) 18:181 Page 6 of 13from participating. As with engagement costs, perceivedrelevance and value of participation is shaped by sociallocation.Across all categories of engagement, participants weremotivated by opportunities to improve health servicesfor themselves and others [18, 21, 23]. When cost of par-ticipation was minimal, such as during consultations,interest in improving the system and having one’s voiceheard was sufficient motivation [18, 19]. At increasinglevels of engagement however, benefits needed to bemore direct to motivate people. Projects identified asbeing at the levels of collaboration and empowerment,which required intense commitment, tended to have amore direct impact on participants, either through changesto health services or a benefit gained through participating,such as gaining new skills.Most projects, particularly those involving more intenselevels of engagement, engaged participants on issues relatedto a specific health service. Participants were recruitedfrom the service and patients were motivated to participatebecause they had opportunity to directly impact theseservices and therefore their own lives [21, 26, 28–32].Engagement projects in which outcomes of engage-ment had a more distant or abstract effect motivatedparticipants with other benefits. These benefits includedempowerment and increased confidence [23, 26], meetingnew people, gaining skills that could apply elsewhere,including employment [21, 23, 25], reducing isolation,developing community networks and furthering personalgrowth and employability [21]. However, these benefits maynot be sufficient to motivate economically marginalizedpopulations who are struggling to meet basic needs.Meaningful participationEven when people are motivated to participate and toovercome barriers to attending an engagement event,patients experience barriers to communicating theirpreferences, needs, and values to health service planners.Many of these barriers lie in the location of power inengagement processes, which affects whether certaingroups of people participate, how they participate, andhow their participation is legitimized as knowledge toinform healthcare decisions. Meaningfully engagingdiverse populations therefore begins by specificallyaddressing power dynamics among various participantsand between facilitators and participants.Power dynamics between facilitators and participantsshape how knowledge is generated, how problems aredefined, and what ideas inform healthcare decision-making [11, 18]. Participants may not contribute theirlived experience as evidence when issues are defined byfacilitators instead of patients and “expert” evidence isprivileged. Some participants believed facilitators hadpower over their health care and worried giving negativefeedback could negatively affect their care [23]. Others feltfacilitators represented mistrusted institutions, leadingthem to be less honest about their values, preferences, andneeds [21] or to be skeptical of the engagement process[23]. Several articles described professionals’ tendency todominate engagement events through their use of formallanguage [21] or simply by being present because otherparticipants tended to believe professionals were the mostknowledgeable about the subject [22].There were a variety of ways facilitators supportedparticipants to contribute. Most importantly, meaningfulpatient engagement was built on a foundation of trust,through which participants felt safe and comfortable toparticipate. Trust was particularly important in projectsfocused on sensitive issues, such as mental health andsexual health. Strategies to enhance trust included:limiting the presence and contribution of professionals(including decision makers and participants who arecontributing professional opinions) [21, 22]; creatingenvironments that normalize people’s life-context by sur-rounding them with people who have similar backgroundsand experiences [18, 19, 25]; and providing opportunitiesfor people to build trust with other participants prior tosharing sensitive information [18, 19].After laying this foundation, engagement processesshould reinforce trust and safety while empoweringparticipants. Several common strategies were used,including processes that gave participants the power toname and define issues that were important to them[20, 23, 24], explicitly prioritizing and legitimizing lived ex-periences as a form of evidence [22, 27], supporting womento contribute in a variety of ways, and acknowledging theircontributions [21, 23, 25, 28].Findings from interviews and focus groupsMany of the findings from the literature were confirmedand expanded upon through focus groups and interviewswith community members and health services planners.Attending patient engagement eventsPatients confirmed the barriers to participating inengagement due to direct costs of participation, such astime and transportation, and opportunity costs, such aslost social or work opportunities. Women with youngchildren particularly faced challenges, such as cost oftransportation for themselves and their children, andchallenges making appointments. Providers who workedwith marginalized women echoed that many of theirclients face challenges organizing schedules and gettingto appointments on time.Participants stated their motivation to engage arosefrom their perception that they would personally benefit,echoing themes from the literature. In addition, manySnow et al. BMC Health Services Research  (2018) 18:181 Page 7 of 13said they were motivated by giving back to the commu-nity and feeling like their voices would be heard:“I think for me, my input is very important. My wordsare important. That’s all I got.” (Patient participant infocus group).The importance of being heard and respected wasexpressed most frequently by marginalized women whohad experienced discrimination from some healthcareproviders, yet whose lives had been positively impactedby compassionate or empowering healthcare providers.They said monetary incentives were useful and drewtheir attention, yet remuneration was less importantthan feeling like they would have an impact on healthservices. This underscores the importance of patientengagement being authentic and health service plannerslistening to patients and addressing their concerns asmuch as possible.“In the future, we want a better system for our sons,for our family.” (Patient participant in focus group).“So if we’re actually told that we were going to beheard, and that our opinions mattered, would makeus be able to move forward, because a lot of the times,okay, you’ll put it towards us. “Okay, yeah, we wantyour input,” but that’s about it, right?” (Patientparticipant in focus group).Health services planners held similar views. Oneinformant who worked with Indigenous populationsstated, “if you're going to ask the opinion and engagecommunity, you have to be willing to go to bat for themlater to make the change and advocate for the change.”(Planner for Indigenous health services).Both planners and patients were clear about theimportance of valuing patients’ participation, being clearabout how exactly patients voices were contributing totheir programming, and doing what they said they saidthey would do.Planners also motivated people to participate byproviding patients services they were not otherwise ableto afford, such as hairdressing. Finally, they found patientsto be highly motivated to engage in relation to issuesdirectly impacting their lives, such as changes to healthservices they receive.Consistent with the literature, individuals reportedfeeling uncomfortable approaching new settings, such asnew health care providers, due to a lack of trust andconfidence, and even fear. These women would likelyhave a similar reaction to attending patient engagementin an unfamiliar setting. Planners discussed the value ofworking with community agencies that had relationshipswith the community in order to increase potential partici-pants’ comfort and decrease their fear in the process. Forexample, they stated the value of recruiting participantsthrough personal invitations from community providersand holding engagement events in the community agency’slocation, where patients are already comfortable:“For many of those groups it's about building therelationship with the people who support them invarious places and having them do a one-to-one....And the personal ask from the providers who knewthose women was the only thing that got them there,because then they could authenticate it. They gotasked, so it meant that they were important and thattheir voice was important.” (Coordinator forCommunity Health service)Furthermore, several providers who worked in communityhealth centres described success with engagement bymaking it part of the organizational culture and conductingongoing patient engagement, formally and informally, togain patients’ input in service decisions. Informal engage-ment enabled providers to gain input from a diversity ofvoices, not just those individuals who were most interestedin participating.Meaningful participationPlanners elaborated on the themes of power and thepurpose of engagement in relation to how patientsexpress their lived experiences and how planners under-stand these as evidence in the planning process. Theyadvised caution in deciding on topics of engagement andthe way patients are intended to contribute. They feltthat by selecting engagement issues, planners might missthe actual issues that were important to patients. Byhaving full control of the agenda, planners may leavelittle space for patients to share what really matters to them.One informant said they start all engagement activities byasking the community what they want to talk about.Planners also warned e about power imbalances that arisewhen asking patients to share intimate details of their livesas evidence, while professionals share facts, numbers, andsystem-level data. They felt engaging patients over issuesthat matter to them, and empowering them to provide thetype of input they want was essential to fostering meaning-ful participation. Moreover, patients noted the importanceof not just having an opportunity to provide input, but oftheir input leading to a change in the program or servicebeing planned, as a signifier that their engagement wasmeaningful.Patients confirmed power imbalances arise when theengagement facilitator is also the person who providesthe service in question. Many patient informants expresseddiscomfort with providing negative feedback and worrySnow et al. BMC Health Services Research  (2018) 18:181 Page 8 of 13about their future access to care if they voice dissatis-faction. Several specified they would want the facilitatorto be someone who was neutral and who did not providethem services. For example,“If I criticize the way she's doing her job, she's going tolook at me a different way and I’m not going to getmy… the services that I would be before. Or I'll beconsidered a mouthpiece and she's just not going tolisten to anything I say now.” (Patient participant infocus group)“It's definitely a worry, because I'm already strugglingto get the care that I need right now, so if I makethings even worse by putting her down or somethinglike that, or it's going to get even worse kind of thing.”(Patient participant in focus group)Planners with substantial experience engaging mar-ginalized patients described the importance of engagingpatients on issues with which patients had concreteexperience. Asking patients to engage with health systemsissues or other ideas that are abstract from their experi-ences places a burden on patients to learn about the issuesthey were engaging about, which is not only a deterrentbut may also diminish the importance of their values,preferences, and lived experience if they are not able toapply them to the issue.“You would have to do so much work to make thatspace available and supportive, and help themculturally translate about this environment they'vewalked into.” (Patient engagement facilitator)Patients confirmed these ideas through the ways theyresponded to questions about “patient engagement.”Despite our efforts to exemplify it in concrete ways, theconcept of “patient engagement” seemed difficult to relateto. When asked how they would want to be engaged,interviewees found it difficult to develop theoreticalresponses about processes they did not have experienceparticipating in, and instead often responded by discussingtheir individual healthcare experiences. We interpreted thisto mean the concept of patient engagement per se lackedmeaning to patients and was difficult to conceptualize.Conversely, patients felt they could definitely provideinput on concrete issues such as their experiences withhealth services. One informant also suggested she wouldbe interested in observing practitioners and critiquingtheir interactions with patients.Both planners and patients highlighted the importance ofcreating engagement opportunities matching the abilitiesand preferences of those participating. Some patient infor-mants felt challenged to participate in group discussions,particularly large groups. Others said they did not feelcomfortable in group discussion at all, and said theyneeded another way of participating, such as one-on-one discussions, or writing down comments.“[in groups] you might not even say a word becauseother people… by the time I think of something to say,they've moved on.” (Patient participant in focus group)Planners with extensive engagement experience pro-vided paper for patients to write down their ideas, orincorporate opportunities for patients to share their ideasindividually. They also used group facilitation strategiesthat enabled everyone to participate. For example,“And a healing circle … even the smallest, squeakiestvoice can be heard. And so I've learned as well whenusing the talking stick, that's another powerful, powerfultool when engaging, and it honours the learnings fromothers” (Planner for Indigenous health services)Both patients and planners agreed facilitators need togain patients’ trust and comfort in order to meaningfullyengage them. Facilitators can build trust by holdingengagement opportunities in familiar settings and involvingtrusted agencies as well as by signaling that patients’participation was valued by providing food and takingcare to organize events in ways that suited patients:“Makes you feel like what you have to say is importantbecause you guys put the time to make us feel ascomfortable by doing these little things. Not that itwas necessarily needed or whatever, but it just makesyou feel that what you have to say is worthy of goingthat extra mile and putting this whole thing out, youknow.”(Patient participation in focus group)Certain groups such as people who use drugs, areIndigenous, or whose gender is non-conforming reportedexperiencing discrimination in society and from healthservice providers. To build trust and comfort among thesegroups, it is essential to actively normalize their experi-ence within the context of the engagement. For example,facilitators may normalize diverse gender identities bystarting a session asking people about the personalpronoun they wish to use.Some patients said the presence of healthcare executivesor decision-makers had potential to make them uncomfort-able. However, both patients and health service plannerssaid it was not only appropriate for executives anddecision-makers to be in the room, it was important forthem to hear directly from patients. Yet both groupsfelt it necessary to neutralize the power of professionalparticipants through symbolic gestures such as onlySnow et al. BMC Health Services Research  (2018) 18:181 Page 9 of 13using plain language (no jargon), wearing neutral clothing(“no suits”), and ensuring they only spoke when appropriate(e.g., they had permission from patients or patients spoketo them directly).“I don't think [having executives present] ever changedthe dynamic in terms of like in a bad way. I thought italways was excellent. As long as you can have thatperson, you are bearing witness from a one-way glass,and the only time you can speak is if we agree that thequestion in the room is appropriate to be directed towardsyou and that you can engage back with it, becauseotherwise we will affect the dynamic in the room.”(Patient engagement facilitator)These findings highlight the need to adapt engagementprocesses to patients, rather than inviting them to partici-pate in a process designed for health service planners..This requires shifting power to patient participants, suchas by engaging them at a location where they hold power,minimizing participation of people who have power overthem (e.g., their health care providers), giving them choicein how they will participate, and empowering them toname the issues that are important to them or to criticizethe system that has discriminated against them.Facilitators can best adapt engagement processes byconsidering participants’ multifaceted identities, includingage, gender, culture, education, and work background.The knowledge and skills patient participants possess, aswell as their participation preferences, should dictateengagement format and strategies. For example, oneinformant who worked with Aboriginal communitiesindicated processes for engaging many Aboriginal com-munities should adapt to the matriarchal nature of thecommunity, importance attached to elders, and othercultural traditions. On the other hand, when workingto engage women who are mothers, the point of inter-action will likely be different, and the way of engagingthem might also look quite different. Facilitators shouldalso examine their own identities and how these, inrelation to patients’ identities, shape power dynamics inengagement processes.Development of the modelWhat emerged from the synthesis of the findings fromthe literature review, interviews, and focus groups was nota single process for engaging marginalized populations,but instead an iterative process of fitting the engagementmethod to a particular situation (e.g., to patients’ needsand barriers to engagement, type of input patients arecontributing, ability of the program to act on patients’input, and health service planners’ needs). The model isintended to help planners develop an engagement processin which participants feel safe and empowered to sharetheir lived experience as a form of evidence in healthservice planning. Underlying this iterative process is a setof principles for meaningfully engaging marginalizedpeople in health services planning.Figure 1 shows the first iteration of the model, whichstarts with an assessment of program leadership’s readinessto listen to the input of marginalized populations and useit to inform their planning process. If the program is notprepared to engage patients in a meaningful and authenticway, it should not proceed with patient engagement. Next,program planners engage in an iterative process of defininga clear purpose for engagement, identifying population(s)of interest, determining an appropriate environment forengagement, developing a process of information sharing,and considering benefits to those being engaged. Theseelements are viewed through a gender lens that recognizeshow gender shapes experiences, identities, and opportun-ities. The IAP2 spectrum of participation, which is repre-sented as a funnel, is used as a framework to determine anappropriate method for engagement. From there, consider-ation is given to how to recruit participants beyond thosewho already seek healthcare, conduct engagement that em-powers marginalized patients to engage in meaningfulways, then feed patients’ input into the decision makingprocess, followed by feeding information back to partici-pants on how their input was used to inform decisions.Finally, processes and outcomes of the engagement areevaluated. This model was used in two pilots and refine-ments were made based on those experiences. The refinedmodel is shown in Fig. 2.In our refined model, we shifted determination ofan appropriate engagement environment (setting) tofollow the choice of engagement method, as part of anew logistics category, which also incorporates re-cruitment and barriers to engagement. This shift isthe most significant aspect of the revised modelbecause the choice of engagement level and methoddictate considerations for all other aspects of theprocess.For the engagement itself, considerations for facilita-tion and power inequities were highlighted due to theimportance they had in the pilots. As well, somechanges to the graphic design were made in order tobetter communicate concepts in the model, such asplacing principles1 on a circle surrounding the rest ofthe model to indicate they are important throughout allstages.The experiences from the pilots were also used torefine the planning manual. Questions were clarifiedand reordered based on feedback from planners whoparticipated in the pilots. (The final tools can beaccessed from the Canadian Foundation for HealthcareImprovement’s (CFHI) Patient Engagement ResourceHub [33]2).Snow et al. BMC Health Services Research  (2018) 18:181 Page 10 of 13DiscussionRecognizing that most engagement processes are gender-blind, the purpose of this study was to develop a model toengage marginalized women in health services planning.We drew on literature and qualitative interviews and focusgroups with participants from diverse populations andwith health services planners and researchers withexperience engaging marginalized populations to createa planning model. This model differs from traditionalmethods of patient engagement, such as those that “acti-vate” patients and deploy them into planning processes.Such methods often put the onus on patients to learnto interact with health services planners in ways thatconform to health service planners’ norms and reinforceexisting power dynamics. Instead, our model puts theonus on those planning health services to listen andrespond to voices of patients who have not traditionallybeen engaged and to engage with them in the ways inwhich these participants prefer to engage. This model callsattention to power dynamics in engagement processes andpromotes strategies to empower patient participants toensure they can convey their preferences, values, andneeds to healthcare planners.A recent study by Bellows et al. [34] explored percep-tions of patients, providers, and leaders involved in patientengagement at a large health authority in Canada aboutwhat they believe makes for successful engagement.Though the study was gender-blind and did not addressissues of diversity or marginalization, it did find similarthemes to ours, including the importance of having a clearpurpose, avoiding jargon, and evaluating the engagement.Interestingly, while patients in this study noted somedemographic groups were “missing” from patient engage-ment experiences, evidence from the article suggests thepatient engagement experiences were not necessarilysupportive of marginalized groups. For example, in thatstudy, leaders articulated the importance of “seekingpatient advisers who have dealt with and accepted theirhealthcare experience and who are, therefore, emotionallyready to participate” (p. 23), which suggests they expectpatients to conform to their expectations of appearingunemotional; thus they would exclude individuals whoexpress themselves in emotional ways. Moreover, byrequiring that patients had “dealt with and accepted”their healthcare experience, they suggest they wouldexclude those individuals who, for example, have beendiscriminated against by the healthcare system and hadnot “accepted” this. They also stated that leaders expectedpatients to be “active participants” versus passive oneswho “just show-up once a month and eat their sandwiches”(p. 21) with no consideration that engagement methodsmay silence some participants.There is growing recognition that health servicesplanners need to create more inclusive and accessiblepatient engagement experiences in order to meaningfullyengage a diverse range of populations [35]. In anotherrecent paper, Ocloo and Matthews [36] criticize existingmodels of patient and public involvement as “too oftenrooted in a mechanistic, controlled and professionallydominated approach” (p. 629) and identify many of thesame barriers to patient engagement as we identified inour research. They suggest “broader frameworks andmethods of involvement should be used that offer betterways to share power with healthcare professionals. Centralgoals of involvement should focus on issues of inclusivityand representation, equalities, non-discrimination andempowerment” [36](p. 629). The model we present seeksto provide just such a framework.In addition, there is a growing interest in engagingpatients in planning and conducting health research[37, 38] and the importance of inclusiveness in thisendeavor has been raised [39]. Further, lack of training inpatient engagement for researchers, healthcare partners,and other stakeholders has been noted [40]. The principlesand process of engaging marginalized populations pre-sented in our model could be applied to research andthe material produced in our project may be useful toresearchers as well as healthcare planners.LimitationsThe literature review was limited by the difficulty offinding relevant literature, resulting from the emergingnature of the field, and variations in terms and defini-tions surrounding patient engagement. Further, patientengagement is often conducted in institutions that eitherdo not focus on publishing their processes (such ascommunity-based or government institutions) or do notmake publications continuously and readily accessible.The terms vary, and many reports are no longer access-ible because of the continuously changing nature ofgovernment and non-governmental organizations andtheir websites.The interviews and focus groups engaged patients whowe were able to recruit. Given the focus of our projecton marginalized populations, we made significant effortsto be inclusive in our recruitment; for example, in ourpilot of the model with the Public Health Nursing homevisit program, rather than recruiting women who werereceiving healthcare services, we recruited women throughcommunity-based organizations that provide servicesoutside the narrowly defined “health services”, including alocal high school, a First Nation, a group for post-partummothers, and an organization serving refugees. Theseorganizations have developed their services in a morecommunity-based way than healthcare organizationsand consequently serve a broader population of mar-ginalized people who may stay away from healthcareservices. However, we recognized we likely missed theSnow et al. BMC Health Services Research  (2018) 18:181 Page 11 of 13most marginalized individuals, who are not connectedto any services.Although the initial model was tested with two pilotprojects in order to refine the final model, further workis needed to test the robustness of the model by applyingit to more programs, including the engagement of patientsin planning and conducting research.ConclusionsUsing a literature review and qualitative interviews andfocus groups, we created a model to assist health servicesplanners to plan, implement, and evaluate meaningfulpatient engagement with patients not traditionallyengaged in healthcare planning. In addition, we producedboth printed and online training materials to assist healthsystem planners to use the model. Starting with a concernto improve participation of marginalized women inhealthcare planning, we developed a model which remindsplanners to consider how gender intersects with otheraspects of social location and identity to limit participationof various groups, including gender non-conforming indi-viduals (e.g., LGBTQI, two spirited), non-English-speakingindividuals, and those with experiences of substance use,low income, violence, homelessness, and/or mental healthchallenges. This model emphasizes barriers to participa-tion related to these intersections and provides practicalguidance to reducing barriers. Moreover, it puts responsi-bility for learning how to listen and respond to voices ofpatients who have not traditionally been engaged on thoseplanning health services rather than requiring patients tobehave in ways preferred by health service planners.Further research is needed to explore the effectiveness ofthis model in the meaningful engagement of marginalizedpopulations healthcare planning and research.Endnotes1The principles of the model are: gender-sensitive; focuson power; recognize and work with diversity; recognizethe needs of decision makers in the process; value livedexperiences; commit to using the patients’ input; andreport back to patients.2More recently, the material was adapted to create anonline learning module to assist health services planners toconduct meaningful patient engagement with marginalizedpopulations. This course can be accessed online [41].Additional filesAdditional file 1: Contains the guides for semi-structured interviewsand focus groups with female community members. (PDF 86 kb)Additional file 2: Contains guide for the semi-structured interviews withhealth service planners and researchers who had experience engagingpatients, particularly people whose voices have not traditionally beenheard in health services planning. (PDF 69 kb)AbbreviationsCFHI: Canadian Foundation for Healthcare Improvement; CIHR: CanadianInstitutes for Heath Research; CINHAL: Cumulative Index to Nursing andAllied Health Literature; IAP2: International Association of Public Participation;LGBTQI: Lesbian, gay, bisexual, transgender, queer or questioning, andintersex; MEDLINE ®: Medical Literature Analysis and Retrieval System OnlineAcknowledgementsThe team wishes to acknowledge the support of Linda Bachmann, CherylDavies, Denise Penaloza, Amy Salmon, and Hemi Shrestha. We thank theFraser Health Library for assistance with the literature review; AmandaLaboucane and Stephanie Parent, who were practicum students whocontributed to the project; and Andrew Dunn from the Learning &Development Program at the BC Children’s Hospital & BC Women’s Hospital& Health Centre for assistance with developing the online learning module.We are grateful to the individuals who shared their insights and experienceswith us as participants in interviews, focus groups, and the pilots.FundingFunding for the study was provided by a Canadian Foundation forHealthcare Improvement Patient Engagement Project grant, which fundedprojects related to patient engagement broadly but did not direct the studydesign or execution. Funding for the creation of the online learning modulewas provided by a Canadian Institutes for Heath Research (CIHR)Dissemination grant, the call for proposals for which noted a desire to fundthe translation of research into e-learning initiatives. Both of these fundingagencies inspired our work but we not involved in the study design, studyexecution, or the writing of this manuscript. In kind support was provided toMES and KT by the Fraser Health Authority, to MES by the Centre for HealthEvaluation and Outcome Sciences (CHÉOS), and to AP by the BritishColumbia Centre of Excellence for Women’s Health and the British ColumbiaWomen’s Hospital & Health Centre. These agencies also were not involved inthe study design, study execution, or the writing of this manuscript.Availability of data and materialsData generated and analyzed during the study are not publicly available dueto them containing information that could compromise research participantprivacy/consent.Authors’ contributionsMES and KT conceived the study, participated in its design and coordination,conducted data collection and analysis, participated in the creation of themodel, and drafted the manuscript. KT conducted the literature review. APparticipated in the design of the study, the creation of the model, and draftingof the manuscript. All authors read and approved the final manuscriptEthics approval and consent to participateThis project received research ethics approval from the Fraser Health AuthorityResearch Ethics Board. Participants in both Phase I interviews and focus groupsand Phase II patient engagement sessions signed informed consent forms.Consent for publicationNot applicable.Competing interestsThe authors declare that they have no competing interests.Publisher’s NoteSpringer Nature remains neutral with regard to jurisdictional claims inpublished maps and institutional affiliations.Author details1Centre for Health Evaluation & Outcome Sciences (CHÉOS), University ofBritish Columbia, St. Paul’s Hospital, 588 - 1081 Burrard Street, Vancouver, BCV6Z 1Y6, Canada. 2University of British Columbia, 2329 West Mall, Vancouver,BC V6T 1Z4, Canada. 3BC Women’s Hospital + Health Centre, E305 - 4500Oak Street, Vancouver, BC V6H 3N1, Canada.Snow et al. BMC Health Services Research  (2018) 18:181 Page 12 of 13Received: 3 April 2017 Accepted: 27 February 2018References1. Fraser Health. Community engagement. 2009. http://www.fraserhealth.ca/media/Community%20Engagement%20Framework.pdf.2. 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