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Improving care and wellness in bipolar disorder: origins, evolution and future directions of a collaborative… Michalak, Erin E; Hole, Rachelle; Livingston, James D; Murray, Greg; Parikh, Sagar V; Lapsley, Sara; McBride, Sally Sep 10, 2012

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Improving care and wellness in bipolar disorder:origins, evolution and future directions of acollaborative knowledge exchange networkMichalak et al.Michalak et al. International Journal of Mental Health Systems 2012, 6:16http://www.ijmhs.com/content/6/1/16 10CASE STUDY Open AccessImproving care and wellness in bipolar disorder:origins, evolution and future directions of acollaborative knowledge exchange networkErin E Michalak1*, Rachelle Hole2, James D Livingston3, Greg Murray4, Sagar V Parikh5, Sara Lapsley6and Sally McBride7AbstractThe Collaborative RESearch team to study psychosocial factors in bipolar disorder (CREST.BD) is a multidisciplinary,cross-sectoral network dedicated to both fundamental research and knowledge exchange on bipolar disorder (BD).The core mission of the network is to advance the science and understanding of psychological and social issuesassociated with BD, improve the care and wellness of people living with BD, and strengthen services and supportsfor these individuals. CREST.BD bridges traditional and newer research approaches, particularly embracingcommunity-based participatory research (CBPR) methods. Membership of CREST is broad, including academicresearchers, people with BD, their family members and supports, and a variety of health care providers. Here, wedescribe the origins, evolution, approach to planning and evaluation and future vision for our network within thelandscape of CBPR and integrated knowledge translation (KT), and explore the keys and challenges to success wehave encountered working within this framework.Keywords: Bipolar disorder, Interdisciplinary, Community-based participatory research, Knowledge translationBackground“I think it can be difficult for people to fullyunderstand what it is like to experience the dizzyingswings from elation to crushing depression inherent inbipolar disorder. Grandiosity and psychosis are akin topossession by an alien force; briefly exhilarating, thenterrifying, exhausting and confusing. The aftermath -when you wake up with your whole life in shambles -is possibly the worst of all. Day to day we live with thechallenges of grinding self-doubt, irritability, insomnia,anxiety, agitation, self-stigma, social isolation anddisability. Bipolar disorder can be the cause oftremendous suffering. Yet there are those of us who livewell. Its presence can confer a richness of experienceand a desire to soar that many of us parlay into livesof creative and humanistic contribution.”As team member Sara Lapsley describes in this open-ing quote, bipolar disorder (BD) is a potentially seriouscondition characterized by extreme mood states ofmania and depression, as well as chronic subclinicalmood dysfunction [1]. The condition is more commonthan previously thought: classical BD type I affects about1% of the population, but over 6% may fall on the bipo-lar spectrum [2]. Over half a million Canadians are esti-mated to experience the condition. Even though BD canbe associated with significant strengths (e.g. [3]), its netfunctional impairment ranks it as the 6th leading causeof disability worldwide [4]. Further, hospitalization ratesfor BD are increasing among young adults [5] and it hasbeen estimated to be responsible for half of inpatientcare costs [6,7], making it a serious public health con-cern. People with BD must also contend with the effectsof stigma resulting from negative social reactions to theirillness [8].Historically, research into BD has been conductedwithin a biomedical framework, with the bulk examiningthe biological causes and consequences of the condition,and pharmacological approaches to treatment. Indeed,* Correspondence: erin.michalak@ubc.ca1Department of Psychiatry, University of British Columbia, 2255 WesbrookMall, Vancouver, BC V6T 2A1, CanadaFull list of author information is available at the end of the article© 2012 Michalak et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the CreativeCommons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, andreproduction in any medium, provided the original work is properly cited.Michalak et al. International Journal of Mental Health Systems 2012, 6:16http://www.ijmhs.com/content/6/1/16pharmacology forms the bedrock of treatment for manypeople who live with BD [9]; however, outcomes in BDvary widely. Even optimal pharmacology fails to ward offmood episodes in some people, and rates of relapse andhospitalization are high. For example, one longitudinalstudy has shown that 37% of patients taking mood sta-bilizing medications will relapse back into an episode ofdepression or mania within one year, 60% in two years,and 73% in five or more years [10]. Further, psychosocialfunctioning and quality of life (QoL) can remain com-promised between mood episodes [11-13].Although this evidence paints a bleak picture, peoplewith BD can live well, and experience optimal QoL[14,15]. In recent years, we have seen a changing zeit-geist in BD research [16]. Mirroring developmentswhich occurred in schizophrenia research a decade earl-ier [17], comprehensive biopsychosocial models of BDhave now been proposed [18-20], and a number ofadjunctive psychosocial treatments found effective [21].The groundswell of research around constructs such asrecovery [22], QoL [23], wellness [15,24] and positivefunctioning [25] are further evidence of this shiftingfocus. However, research activities in this area have beenfragmented.Case descriptionIn this article, we provide a Case Study of the establish-ment of a unique network centred in Canada, the Col-laborative RESearch Team to study psychosocial issuesin Bipolar Disorder (CREST.BD). The overarching mis-sion of CREST.BD has been to advance the science,understanding and application of psychosocial issuesassociated with BD, improve the care and wellness ofpeople living with BD, and strengthen services and sup-ports for these individuals. The article begins by describ-ing the evolution and current status of the network,including illustrative examples of mental health researchand promotion the network has undertaken. The valuesguiding the practices of CREST.BD, including our com-mitment to community based participatory research(CBPR) principles are introduced. We then describe ourapproach to strategic planning and evaluation, and ex-plore factors that have either promoted or hindered thenetwork’s success. We conclude with reflections on thepotential value this kind of novel approach adds in termsof the quality and impact of mental health research andpromotion.Origins of CREST.BDThis collaborative team originated with a PhD-psychologist(Erin Michalak) working to develop a program of researchinto the psychosocial facets of BD. Her early qualitativework examining the QoL construct [26] indicated thatmyriad psychosocial factors affect outcomes in people withBD, and that many of these factors (e.g., stigma, spirituality,social support, identity) do not fall within the rubric of thebiomedical model.Recognizing the potential utility of a multidisciplinary,collaborative approach, a one-year ‘team planning’ grantfrom the British Columbian health funding agency wassecured to form a provincially-focused team. From theoutset, a set of core values emphasizing authentic collab-oration and diversity of expertise were explicitly adopted.On these grounds, it was important to expand the teambeyond researchers to include clinicians working on thefront lines of clinical care. It also entailed valuing thepowerful ‘lived experience’ expertise possessed by peoplewith BD, their family members and supports. The suc-cess of CREST.BD would in part be determined by en-suring that the range of founding team membersendorsed similar values.A cadre of founding members with expertise acrossthe various psychosocial aspects of BD (spanning thedisciplines of psychology, psychiatry, social work andoccupational therapy) were recruited. Individuals withexpertise across both acute treatment and health pro-motion, theoretical models, treatment models and re-gional and cultural divides were invited, as well aspeople with experience in network development. SomeCREST.BD members were international experts in BDresearch; others were selected for their expertise incomplementary fields.With a founding team in place, the next task was toidentify research priorities. First, supplementary fundswere secured from the Canadian Institutes of HealthResearch (CIHR) to conduct a Community EngagementDay (CED, see Table 1). Second, findings from the en-gagement day were fed into the subsequent team meet-ing, during which priority areas for research wereidentified (see Table 1). Third, further work (e.g., litera-ture searches, further consultations, networking) wasconducted to select initial research foci (specifically, re-search designed to explore the QoL construct in BD andpsychosocial treatment intervention studies). At thesame time, gaps in the team’s expertise were identifiedand addressed.In summary, this one-year team planning phaseallowed CREST.BD to begin the process of: coalescingand establishing a collective identity, exploring corevalues and mission, identifying priorities for researchand gaps in the team - all valuable factors for supportingsuccessful team functioning [27].Evolution of CREST.BDAlthough multidisciplinary, collaborative approachesare increasingly acknowledged as necessary to addresssome of the most urgent contemporary health chal-lenges [27,28], CREST.BD, like many emerging teamsMichalak et al. International Journal of Mental Health Systems 2012, 6:16 Page 2 of 12http://www.ijmhs.com/content/6/1/16[29], struggled in the absence of administrative or infra-structure resources necessary to bring these collabora-tions to fruition. Modest environmental support wasprovided by the primary host institution, the Universityof British Columbia Department of Psychiatry, whileentrepreneurial partnerships with other networks suchas the Canadian Network for Mood and Anxiety Treat-ments (CANMAT) enhanced the visibility and credibil-ity of CREST.BD. In addition, the team acquired smallgrants (such as CIHR meeting and dissemination grantsand funding from individual members’ own institu-tions), and continued to build community capacity. Theteam hosted an annual CED, the topic of which wasdecided by community priorities: namely, stigma anddiscrimination (2009); recovery (2010), and creativity(2011). A novel feature of these events was the embed-ding of a formal research project (see Table 2).With very limited resources, CREST.BD found ways todevelop while still making substantial contributions to theBD research and KTcommunity. Standard metrics of teamproductivity, such as leveraging of funds and publications,demonstrated a high level of output: With $50,000 inbaseline infrastructure investment, the team leveraged$350,000 in research funding between 2007–2010 andproduced 16 publications. The team garnered significantmedia coverage (such as an article in a national newspaper,see www.crestbd.ca), recruited over 350 people with BD ortheir family members to join their ‘Community Consult-ation Group’ and recruited numerous trainees and peer-researchers (knowledge users collaborating in research).This being said, it took enormous effort and goodwill onthe part of the team members to maintain the group inthe absence of core infrastructure funding. This effort paidoff in 2009, when two of the members co-wrote a grant in-cluding 7 additional team members that was ranked top inCIHR’s ‘Knowledge to Action’ competition, securing$200,000 over two years to support KT methods research(see Tables 3 and 4). Critically, this funding allowed theteam to begin to establish many of the components neces-sary for growth, such as the hiring of a KT manager andestablishment of a Community Advisory Group (seeTable 5). The KT manager was responsible for maintain-ing partnerships with community members and stake-holders, while the Community Advisory Group, consistingof individuals with lived experience BD, clinicians andorganizational representatives, was responsible for provid-ing advice regarding the team’s research and KTactivities.Current status of CREST.BDDuring its formative years, CREST.BD primarily oper-ated as a regionally focused team. In 2011, the team wassuccessful in securing the top-ranked application in theTable 1 Community engagement day ‘Psychosocial issues in BD: setting the CREST.BD agendaHeld in a historic building on UBC campus in Vancouver in the spring of2008, CREST.BD’s first (of what were to become annual) CED entitled‘Psychosocial issues in BD: setting the CREST.BD agenda’ was designed toexchange knowledge with community members and key stakeholdersabout priorities for psychosocial/BD research. The event, co-chaired bythe team leader and a team member with lived experience, wasattended by 48 people: 30 community members (people with BD, familymembers, health care providers and community agency representatives)and 18 CREST.BD members. A variety of methods (interactivepresentations, small group breakout sessions and brainstorming sessions)were used to garner input; QoL, wellness and stigma were identified askey research priorities for the team.To maximise KT, the CED and subsequent team meeting were held back-to-back, with core team members attending both events. The meetinginvolved 30 participants, representing provincial, national andinternational expertise in BD research and clinical care. Prior to themeeting, a quantitative email exercise was performed to produce aninitial list of potential BD/psychosocial research areas. Specifically, teammembers participated in a group brainstorming exercise to generatepossible research foci, the results of the exercise were collated andparticipants were then asked to rank each foci on the basis of: i)perceived importance; ii) personal interest and expertise; and; iii) capacityto collaborate. In this facilitated group environment, time was alsodedicated to exploring each of the research topics, in the context of thefindings from the engagement day, in addition to exploration of theteam’s mission and core values.Table 2 2011 Community engagement eventsBased on feedback from prior community consultations, CREST.BDdeveloped a series of inter-related events for 2011 targeted towardspeople with BD who self-identified as creative. The first event was apublic screening of three documentaries (two by local B.C. filmmakersliving with BD), which explored understandings of the role of creativity inBD. A post-screening discussion with one of the filmmakers allowed forgreater audience interaction with the issues and themes that emergedfrom the films. The second event represented the team’s third annualCED, entitled: ‘Touched with Fire or Burnt Out?’: Igniting a dialogue.During the day-long event, 22 participants shared experiences duringfocus groups designed to explore the factors which encourage orchallenge the expression of creativity. Ten team members were inattendance, several of whom presented recent team research on the linkbetween BD and creativity. Graphic facilitation methods [30] were used tocapture the themes from the day and additional action-oriented insightsfrom participants.The final event was held later the same day, where participants and thegeneral public were invited to: ‘The Creative Life: A Night of Musiccelebrating BD’ held at an arts-focused, community venue. A mural,developed through the graphic facilitation process, was displayed, andserved as a focal point for further engagement. The main feature was alive band fronted by a team member with BD, local musicians and teammembers, who performed popular songs by artists with BD. Each of theinter-related events was co-facilitated by the team leader and a teammember living with BD, each with their own unique expertise in thecreative arts. Over 250 community members and 20 team membersparticipated. The combined events increased the team’s visibility in theBD community, widened community and health care provider networks,and encouraged community members and wider audiences to engage inthis new area of research.Michalak et al. International Journal of Mental Health Systems 2012, 6:16 Page 3 of 12http://www.ijmhs.com/content/6/1/16inaugural CIHR Network Catalyst competition, securing3 years of infrastructure funding (~$600,000 with over$400,000 of in-kind support) to support growth and evo-lution into a national network specializing in BD re-search and KT. The team’s core mandate is to focus onresearch, clinical practice, and social change informed bya focus on psychosocial factors in BD and a commitmentto CBPR. A relatively recent orientation to research,CBPR in this context refers to research in which indivi-duals with BD and their family members, and other keycommunity stakeholders (e.g., health care providers), areactive participants in research and KT.The large Network Catalyst grant supported establish-ment of a core staff team under the direction of the Net-work Leader. In particular, funds were used to continuethe KT manager position and employ a network man-ager. Both positions play a key role in supporting thedevelopment and implementation of a strategic planfor the network. Specifically, the network manager rolesupports the strategic planning process by facilitating stake-holder consultation, and implementing strategic initiatives.The KT manager plays a critical role in conceptualizingand implementing the network’s strategic directions for KTinitiatives, development and maintenance of KT and com-munication platforms.Although there are other excellent teams internation-ally specializing in BD research (e.g., [31]), CREST.BD isunique in its multidisciplinary configuration; it nowincludes team members from a diverse range of disci-plines (i.e. psychology, psychiatry, criminology, nursing,social work, gerontology, occupational therapy and gen-etic counseling), expertise in a breadth of research meth-ods and wide ranging fields of BD specialization(i.e. stigma, psychosocial treatments, advocacy, advancedstatistics and psychometrics, assessment, cognition, spir-ituality, coping, novel technologies, indigenous, youthand aging populations). Further, it is the only cross-sectoral BD network - integrating ‘lived experience’ orTable 3 Health promotion case example 1: Self-management strategiesSelf-managementstrategiesIt is now widely recognized that self-management strategies (the decisions and actions an individual takes to cope with orimprove their health) are critical for living well with chronic mental health conditions (e.g., [32]). Indeed, AccreditationCanada’s ‘Standard’s for Mental Health Services’ [33] require support for self-management and it is likely that a chronic caremodel rather than a treatment model is optimal for a waxing and waning condition such as BD [21,34].CREST.BD has generated knowledge [8,15,24] on effective self-management strategies for people living well (with BD,identifying five key issues of importance:1) Self-management strategies;2) Sense of self/identity;3) Social support;4) Personal growth; and5) Addressing internalized-stigma.As one component of its CIHR Knowledge to Action grant, the network has worked with peer-researchers to co-produce aseries of general audience summaries and workshop modules describing these research findings to disseminate nationally.Table 4 Health promotion example 2: Tackling stigma through theatreOne contributing factor to disability and poor QoL in people with mentalillness is the degree of stigma they experience [26,43,44]. It is now well-recognized that the stigmatization of mental illness leads someindividuals to avoid or discontinue treatment for their mental healthproblems [45]. CREST.BD has generated knowledge relating to stigma inBD from several research projects, demonstrating, for example, that‘moving beyond internalized stigma’ (a progression from a state of self-stigmatization to one where society’s stigma toward people with mentalillness is no longer internalized [8] is, an important facet of living wellwith BD [8,46].To share knowledge about stigma in BD with both people with BD andtheir health care providers, one component of the team’s CIHR KTA grantinvolves team member Victoria Maxwell (an actress and mental healtheducator who lives with BD) performing a new one-woman theatricalperformance entitled ‘That’s Just Crazy Talk’ commissioned as part of thegrant. Although drama has been used with success elsewhere to targetmental illness stigma awareness [47,48], this is the first example of suchan initiative in the BD field. CREST.BD launched the play in Vancouverand Toronto in July of 2011. Health care providers and people with BDwere invited to participate in the research component of the activity,which involved pre- and post-performance questionnaires. The generalpublic was also invited to attend.The two performances attracted 65 health care providers, 54 people withlived experience, 3 individuals who identified as both, and over 100additional audience members.In ‘That’s Just Crazy Talk,’ dramatic narrative is used to convey thecorollaries of decades of personal and familial mental illness, effectivelytranslating the narrator’s personal experiences of both external andinternalized stigma into a vivid, often humorous and sometimes troubled,portrait of life lived with BD. The narrator addresses her family’s profoundexperiences of mental health stigma and her attempts to come to termswith the implications of her chronic and complex illness. The audience’sintimacy with the narrative is underscored by the community-accessiblelocations where the play is held, the small audience size (approximately140 participants per show) and a post-performance question and answerperiod where Victoria’s ‘character’ is cemented in reality as individualsengage with her present and vibrant self. The lived-experience aspect ofthe performance is unique in this genre of theatre, and is viewed by theteam as a key dimension for using this approach to address stigma.Further performances of ‘That’s Just Crazy Talk’ have been planned inCanada and internationally, and a DVD of the performance has beenproduced.Michalak et al. International Journal of Mental Health Systems 2012, 6:16 Page 4 of 12http://www.ijmhs.com/content/6/1/16community expertise, the public health sector, commu-nity agencies and academia - to specialize in researchcommitted to integrated KT. A further strength ofCREST.BD is its significant international linkages, par-ticularly to the US, Australia and the UK.Community-based participatory researchCREST.BD adheres to the principles of CBPR (seeTable 5). Driven by mandates to produce practical andapplied research that facilitates health promotion andaddresses health disparities, researchers are increasinglyemploying CBPR approaches to address complex healthand social problems [35-38]. At its core, CBPR can bedefined as scientific inquiry that is conducted as a part-nership between researchers and community membersaffected by a particular health condition, disability orissue. It is characterized by substantial community en-gagement in the development and implementation ofthe research including formulating conclusions andcommunicating results [39]. It is particularly suitable forworking with socially disadvantaged communities, whosemembers experience limited access to resources andwho are disproportionately affected by health disparities.The emphasis is on integrating the generation of knowledgeinto strategies that contribute to provide community andsocial change [38], with research being understood not onlyas a process of creating knowledge, but simultaneously, aseducation and empowerment, and of mobilization for ac-tion [40]. Community-based or participatory approachesrepresent a philosophy of engagement [41] rather than adiscrete research method - researchers employing CBPRcan draw on any number of qualitative and/or quantitativemethods to achieve the identified research goals [42].In the next section, we present what we understand tobe the keys and challenges to success in the establish-ment of CREST.BD, focusing on six areas: 1) Participa-tory leadership and power-sharing, 2) Establishing andmaintaining identity, 3) Attention to communication, 4)Optimal use of resources, 5) Flexibility vs. sustainability,and 6) Optimizing and Evaluating Success and Impacts.Although these are described as discrete facets, the con-cepts intersect, complement and overlap.Consistent with our emphasis on CBPR a premise ofCREST.BD is that research should not be separated fromits implementation, consequently, KT has become a cen-tral modus operandi of the network [49]. We understandKT as: “a dynamic and iterative process that includes,synthesis, dissemination, exchange and ethically soundapplication of knowledge” [50]. An integrated model ofKT is heavily focused on the practices of knowledge ex-change; that is, the sharing of knowledge between andacross research partners and knowledge users. This ap-proach emphasizes collaboration with those directlyinvolved and who have personal knowledge and experi-ences of BD, under the assumption that this willmaximize the likelihood of delivering relevant, pragmaticand effective interventions [51]. In a parallel fashion,providing knowledge and support relevant to learners –a primary tenet of effective continuing education - isdone in an explicit way that changes health care deliveryat the level of the health care provider. We believe thatsuch an approach is necessary to drive policy reformswhich can improve access to resources and ultimatelydeliver better mental health outcomes for individuals liv-ing with BD and their family members.Keys and challenges to successParticipatory leadership and power-sharingA participatory leadership approach is one which priori-tizes respect and engagement to harness diversity, buildcommunity, and create shared responsibility for action[52,53]. This commitment to egalitarian and participatorydecision making contrasts with hierarchical leadership,and aligns well with CREST.BD’s commitment to CBPR.Participatory leadership is promoted by commitment toauthentic, reciprocal research partnerships, patience, flexi-bility in research designs and transparent communicationof anticipated and actual research outcomes [36,42,54]. In-tegral to the success of participatory leadership is the in-clusion of members a diversity of lived and learnedTable 5 Key principles of CBPR as outlined by Israel et al. [38] [46: 178–180]1. Recognizes community as a unit of identity central to CBPR;2. Builds on strengths and resources within the community;3. Facilitates collaborative partnerships in all phases of the research (e.g., shared control and equitable participation);4. Integrates knowledge and action for mutual benefit of all partners;5. Promotes a co-learning and empowering process that attends to social inequalities;6. Involves a cyclical and iterative process;7. Addresses health from both positive and ecological perspectives – attending to biomedical, social, economic, cultural, historical, and politicalfactors as determinants of health and disease/illness; and,8. Disseminates findings and knowledge gained to all partners.Michalak et al. International Journal of Mental Health Systems 2012, 6:16 Page 5 of 12http://www.ijmhs.com/content/6/1/16experiences which allows for generous sharing of “whatworks” throughout the group (as opposed to directiveleadership) as well as a unique training environment.Power-sharing is integral to participatory team work. Gov-ernance structures are one avenue for power-sharing,therefore CREST.BD has established community struc-tures such as a Community Advisory Group, CommunityConsultation Group and most recently, a National Advis-ory Group (see Tables 6 and 7). Power-sharing has beenfurther supported by including community members asco-investigators or knowledge users on funding applica-tions (where a proportion of the budget is diverted to thecommunity group) and fostering transparent dialogueabout the risks and benefits, goals, and anticipated out-comes of research [54]. Finally, a key to success in ourpartnerships with community members and stakeholdershas been the identification of research priorities importantto them (see Table 1). As CREST.BD has grown, linkagesto other organizations have been strengthened. Most im-pressively, solid attention to the Community AdvisoryGroup has led to more formal alliances and joint grantsubmissions with the Mood Disorders Association of BCand the Mood Disorders Association of Ontario. Atten-tion to the linkages with service providers has led to a“Principal Knowledge User” [55] partnership with CAN-MAT, which allows for identification of needs of healthcare providers as well as implementation of research find-ings in the health care sector.The utopian view of participatory team work is thatwe are all working together to achieve shared goals (seeTable 5). In reality, collaborations between researchersand community members can be strained by a lack ofmutual understanding of each other’s agendas, expecta-tions and needs. CREST.BD’s knowledge users includeresearchers, people with lived experience, health careproviders, community agencies and advocacy groups; attimes, these stakeholders have different agendas. Our ex-perience has been that people with BD and their familymembers place high value on advocating for socialchange; whereas researchers value the team’s researchactivities. Whilst the two goals are not mutually exclu-sive, they are not always fully integrated; CREST.BD’sprimary remit is research and KT, and at times strategicleadership has been required to keep the team’s develop-ment and evolution into a network on track.Establishing and maintaining identityAt the outset, a priority for CREST.BD was to establisha solid identity based on scientific reputation, niche ex-pertise, credibility, visibility, and a shared sense of pur-pose. Visioning exercises around team identity wereTable 6 CREST.BD governance and community partnershipsGovernance CREST.BD has established itself based on its commitment to authentic engagement with community members. The CREST.BD‘Community Advisory Group’ (CAG) consists of 8 members representing: people living with BD, BD health care providers or organisationrepresentatives. The broad objective of the CAG is to provide advice and feedback on CREST.BD’s on-going research and KT activities.More specifically, the CAG:1. Act as a resource to CREST.BD in terms of planning, implementation, distribution and evaluation of research studies and KT;2. Helps to generate solutions to barriers within the research and KT initiatives.3. It has also played a key role in optimizing networking opportunities with the wider BD community;4. Function as a communications vehicle to the BD community on the work and plans of CREST.BD;5. Problem-solve barriers and solutions within the team’s research and KT initiatives.Although the CAG was provincially-focused and populated it is now being reconfigured for a national network. CREST.BD alsoestablished community structures at a provincial level that have been expanded to a national level. For example, the team maintains aCommunity Consultation Group of over 350 people living with BD, family member, supports and health care providers. The consultation grouphas been engaged with CREST.BD activities in a variety of ways, including, developing a new QoL scale, designing the team logo, designingand populating the team website and social media platforms, disseminating information about research and KT activities. In line with CBPRprinciples, the team’s relationship with the CCG is bi-directional; CCG members provide the team with insights, information and knowledge andCREST.BD offers the same in the form of regular newsletters, outreach, access to research findings and other KT.CommunitypartnershipsIn addition to working closely with community members, CREST.BD has been active in developing and maintaining partnerships andalliances with key stakeholder organizations. For example, CREST.BD has a successful partnership with CANMAT (www.canmat.org), anacademic not-for-profit research organisation linking health care professionals from across Canada who have a special interest in moodand anxiety disorders. CANMAT, with its 15 year history, has powerful visibility and credibility to clinicians and policy-makers acrossCanada. Since CANMAT focuses more on biological research and treatments, it too can benefit from CREST.BD by demonstrating abroader commitment to holistic treatment via enhanced attention to psychosocial treatments. CANMAT also has significant operationalexperience in creating and disseminating multiple educational tools and events.More recently, CREST.BD has established a National Advisory Group (NAG) which has a wider remit (e.g., identification of strategicdirections and new national-level partnerships) than the more project-focused CAG. The NAG has national and policy-levelrepresentation (e.g., Mental Health Commission of Canada, Canadian Health Services Research Foundation, Canadian Mental HealthAssociation, the Mood Disorders Society of Canada.Michalak et al. International Journal of Mental Health Systems 2012, 6:16 Page 6 of 12http://www.ijmhs.com/content/6/1/16conducted at annual team meetings. Additionally, brand-ing facilitators (e.g., team logo and branded website,Facebook and YouTube sites) were produced. This col-lective identity has been paramount in leveraging fundsand other returns, and has fostered the shared sense ofvalues, vision, and purpose by team members [56]. Hav-ing achieved this intra-team common ground and recog-nition as a leading research group in a niche area of BDresearch, CREST.BD’s identity provides a solid founda-tion from which to attract new partners and collabora-tors [27].One potential threat to identity is ‘mission drift’, as ex-emplified by seeking funds outside of the network’smandate. Mission drift can be minimized by transparentaccountability to governance systems and open commu-nication with the wider community. In a relatively smallorganization, mission drift can also result from member-ship decisions - the core mandate is not advanced byaccepting new members who may increase the profile orfundability of the group, but who do not share thegroup’s culture. Culture encompasses the values andnorms that guide how the network’s research and KT areundertaken, and is a force that shapes collaborative be-haviour and functioning [27]. (See Figure 1: Diagram ofNetwork Configuration (Derived from [27]).One of our primary conceptual lenses is an orientationtowards wellness or resiliency, instead of dysfunctionand pathology. At the same time, there is open discus-sion of conflicting agendas; acute care priorities impelcertain research directions while the focus on wellnessplaces greater emphasis on others. A project involvingthe theatrical presentation of the impact of BD on oneindividual provides an illustrative example (see Table 4).This theatre-based intervention vividly demonstrateddifficult encounters with the traditional health care sys-tem. During the theatrical performance, a psychiatristteam member who co-wrote the grant that funded theproject was on-call providing the type of hospital-basedtreatment that the performance gently parodies. The exi-gencies of acute care encourage some team members toadvocate for research relevant to acute care settings,while others continue to advocate for the wellness per-spective. Membership from both camps is important tothe ultimate relevance of CREST.BD.Attention to communicationWell-honed, tailored communication strategies are a cen-tral component of effective integrated KT, serving to buildcommunity cohesion and support group identity [27]. Wehave used a blend of, face-to-face, written and virtualinteractions including regular e-newsletters a dedicatedwebsite, Facebook and Twitter accounts, YouTube chan-nel and (see Table 7). Team members communicate via amembers-only project management system where studyprotocols, budgets, meeting minutes and ethics docu-ments are centrally housed to facilitate transparency andaccountability. We have created a database of generalaudience summaries of our team publications, new re-search and KT initiatives in order to foster transparency,share knowledge and encourage community engagement.Although CREST.BD is based on a commitment toauthentic engagement and communication, this processTable 7. CREST.BD communication strategiesAs with any academic team, we publish our research findings in peer-reviewed journals. However, working in a multidisciplinary environmentaffords us additional leverage in terms of capitalizing on our researchfindings. For example, we published the primary findings from our self-management strategies for BD study in a top-ranked mood disordersjournal [15]. Additional team members then went on to explore theclinical implications of the findings [24], perform an in-depth analysis ofthe role of stigma [8] and replicate the study in a New Zealandpopulation [61]. We also endeavour to transform the findings from ouracademic publications into other more accessible formats (e.g., contentfor newsletters, magazine articles), media (e.g., radio or televisionsegments, public discussion forums), or materials that give voice to livedexperience perspectives. In 2012 the network will be the subject of an in-depth Canadian Broadcasting Company (CBC) radio piece, thedevelopment of which was supported by a competitive CIHR HealthJournalism Award.Underpinning our communications are three web platforms: a teamwebsite (www.crestbd.ca), Twitter (www.twitter.com/CREST_BD) andFacebook page (www.facebook.com/CRESTBDBipolarResearch), whichcontinue to demonstrate sustained growth in visitor traffic. For instance,from January to April 2011, the website welcomed 1,320 new visitors and714 returning visitors; between January and April 2012 this had increasedto 2027 new visitors and 1028 returning visitors. The visitors in this firstquarter of 2012 also demonstrated increased engagement; spending, onaverage, more time on the website. Our CREST.BD Facebook page,launched in February 2011, received over 6554 post-views in June 2012,an increase from 1844 views from June 2011. On Twitter we now hostover 130 followers including international researchers, journalists, mentalhealth organizations and KT specialists, and @CREST_BD is featured onseveral subscribed Twitter lists. The website has a number of interestingfeatures, including scientific publications and presentations tagged bytheme, Bipolar Currents - general audience snapshots of our researchfindings, pages dedicated to sharing our major research projects andproducts (e.g. That’s Just Crazy Talk, Quality of Life in Bipolar DisorderScale), embedded YouTube videos and Slideshare presentations from ourbranded CREST.BD channels, and a live Twitter feed representing furthermodes of KT. With multiple social media and website updates occurringeach week, we expect a continued increase in viewership of this multi-modal, web-based KT infrastructure. Further, this KT infrastructure has thepotential to facilitate our outreach into rural and remote communities.In some CREST.BD activities, our research and communication goals areclosely intertwined. For example, our ‘Recovery Narratives’ project pairsup a clinician team member with a person with BD who wishes to sharetheir story of recovery from BD. The primary research objective of thestudy is to explore the impact of clinician-guided recovery narratives onvarious outcomes, measured quantitatively and qualitatively. However,there are also more rapid KT outputs from the study as the writtenrecovery narratives are made available via the team website to the widercommunity.Michalak et al. International Journal of Mental Health Systems 2012, 6:16 Page 7 of 12http://www.ijmhs.com/content/6/1/16has not always been easy. Before the team secured itsCIHR KTA funding and associated support for a KTmanager, most of the day-to-day communication withcommunity members and partners was handled by theteam leader. At times this high level of communicationcould be intense, especially for an early-career re-searcher. As CREST.BD develops from a provincially-focused team into a nationally-focused network we willalso need to attend to issues such as the engagement of allprovinces/territories and strategies for reaching Franco-phone communities and rural/remote or Northern com-munities (see External Communications section).Optimal use of resourcesLeveraging existing resources has been a key to CREST.BD’s success. We have built capacity by: centralizingresources and reducing redundancy and duplication ofefforts; providing stakeholders with access to existingresources through new communication channels; and pro-viding a unique training environment for students, newinvestigators, clinician-scientists and peer-researchers. Wehave provided a platform where individuals based in otheruniversities and organizations have an additional venuefor visibility and action; this in turn facilitates sharing ofresources from those partners, fostering mutual success.As a national network, we have the ability to sourceresources and knowledge in-house, allow for sharing of fa-cilities and ‘economy of scale’ in expertise, decrease therisk of duplication of resources and to assimilate know-ledge from different programs of research (i.e., synthesizeresearch evidence). As part of our goal to leverage existingresources we are conducting a national environmentalscan of BD/psychosocial research, KT and treatmentprograms.Network catalyst core fundingResearch capacityProgrammes of researchResearch outputsIntegrated KT processesImproved care and wellness in BD populationMaterial infrastructureCore staffResearchers, peer-researchers, & stakeholdersNetwork leader Network cultureNetwork identitySocial & technical human capitalCommunicationsPartnerships & collaborationsTraining & mentorshipKT & outreachConceptual lens: wellness and resilienceLearning opportunities programmingCumulative structureSynergistic structureOperational baseFigure 1 Diagram of network configuration.Michalak et al. International Journal of Mental Health Systems 2012, 6:16 Page 8 of 12http://www.ijmhs.com/content/6/1/16As participatory research tends to be resource and timeintensive, optimal use of resources is required [28]. Coord-ination of research activities including community engage-ment and obtaining funds to support both communityand academic infrastructure can be overwhelming [57]. Inaddition, key steps of CBPR such as assessing the commu-nity’s needs, getting to know the community, and develop-ing strong sustainable ties with partners takes significanttime [28,58]. These challenges can result in practiceswhere researchers are accused of adopting a ‘hit and run’model of consultation, leading to distrust and frustrationand undermining core values of CBPR [37,42]. CREST.BDencountered particular issues around the speed withwhich it was reporting outcomes from its combined re-search and consultation days (see Table 2). For example,there were tensions inherent in expediently describing the‘results’ from a community engagement day that incorpo-rated qualitative focus groups requiring in-depth analysis.As one remedy to this, we now produce ‘research snap-shots’ that summarize key process or high-level findingsin a more expedited manner.Flexibility vs. sustainabilityWorking within a multidisciplinary team with variousforms of expertise means we can be flexible in response todifferent kinds of funding opportunities (e.g., operating,Figure 2 Continuance performance management cycle.Figure 3 Continuum of control concerning the network’s activities, outputs, and impacts.Michalak et al. International Journal of Mental Health Systems 2012, 6:16 Page 9 of 12http://www.ijmhs.com/content/6/1/16end-of-grant or integrated KT, KT methods, infrastructurefunding). The pre-established working relationships in theteam and centralized resources (e.g., KT and network man-ager and a cadre of trained peer-researchers) ensure thatwe are nimble in response to funding calls. However, acommon challenge in CBPR research and network develop-ment alike relates to long-term sustainability [27,28].CREST.BD was formed on the basis of a one-year fundingaward, which proved critical for the process of conceptualiz-ing the new team. However, decreased government supportto the provincial funding agency resulted in the discontinu-ation of their team funding stream and CREST.BD waswithout infrastructure funding for a 3-year period. Sustain-ing networks remains an ongoing dilemma [27], and thenetwork will need to attend to sustainability factors closely.As noted above, in our favour is the network’s inherentflexibility; we will be in a position to react quickly to con-textual changes, including societal demands for knowledgeand new funding opportunities. Further, we anticipate thatour integrated KT framework will ensure that network re-search priorities will be malleable to new demands forknowledge over time. Finally, the infrastructure and part-nerships we have developed are integral assets of theCREST.BD research environment and should create a last-ing legacy.Optimizing and evaluating network performanceCREST.BD has adopted an integrated performance man-agement framework in order to formulate and monitorthe strategic planning process for the national network.This framework is comprised of a continuous perform-ance management cycle (see Figure 2: Continuance Per-formance Management Cycle) a logic-based theory ofchange model (adapted from C. Bennett, 1979 [59]), anda continuum of control concerning the network’sactivities, outputs, and impacts (adapted from S. Monta-gue, 2011 [60], see Figure 3: Continuum of control con-cerning the network’s activities, outputs, and impacts).Together, these elements are being used to establish andadapt the strategic goals and directions of the network.In keeping with its core values, CREST.BD is also usingparticipatory processes that prioritize the involvement ofnetwork members and stakeholders in shaping the stra-tegic plan.In conjunction with this strategic planning process, arange of evaluation approaches are being drawn upon toassess the performance and impact of the CREST.BD net-work. Our evaluation framework features a logic modeloutlining the network’s inputs, outputs, and outcomes. Inaddition, we wanted to ensure that our evaluation frame-work was aligned with the dynamic, innovative, and non-linear nature of a KT network. Therefore, our frameworkincorporates the tools of developmental evaluation, whichallow for information to be gathered in a way that informsand supports the ongoing development of a network, asopposed to measuring its performance at a single, fixedperiod of time. Finally, our evaluation is designed to at-tend to the nuances of a KT network; as such, the per-formance indicators are tailored to the fact that CREST.BD sits between the formative/start-up and growth phasesof a network lifecycle. Moreover, the performance indica-tors span four key domains that are considered importantfor evaluating knowledge networks, including resourcesand sustainability, structure and governance, efficiency,and effectiveness (see Figure 4: Four key domains forknowledge networks, [62]).ConclusionsWe believe that the model epitomized by CREST.BD hasthe potential to pay real dividends in terms of improvingFigure 4 Four key domains for knowledge networks.Michalak et al. International Journal of Mental Health Systems 2012, 6:16 Page 10 of 12http://www.ijmhs.com/content/6/1/16the quality and effectiveness of mental health researchand promotion. We believe our CBPR orientation can:support the development of research questions that re-flect health issues of priority to community members[42]; improve research recruitment and retention, andthe quality of research data [42]; and increase the rele-vance and pragmatism of mental health interventions[42,51]. Furthermore, these methods hold the potentialto improve health and wellbeing in the communitymembers, increase health equity and citizenship andmobilize social change for people living with mental ill-ness. Or, as team member Sara Lapsley describes it:“CPBR brings the BD community into the academicconversation, empowering those with BD by elicitingexpertise accumulated through years of lived experience.Informed by our perspective, researchers can workcollaboratively with us to guide research questions andmeaningful interpretations of the results. By usinginnovative KT methods to convey the findings in a waythat is relevant to the BD community, CPBR helpsspread the message of hope, and bestows on us the gift ofengaging in our own recovery”.Bipolar disorder can impose a tremendous burden onthose living with the condition and their family membersand does impose a great burden on the Canadian healthcare system. We have seen a groundswell of research intopsychosocial factors and treatments in BD, and there nowexists a body of knowledge that, if applied, could make asignificant difference to the QoL of people living with BD,their health care providers and the Canadian economy. Inthis article we have described the origins, evolution andcurrent status of a collaborative network dedicated toresearching and exchanging knowledge on psychosocialfactors in BD. We hope to have demonstrated some of theadded-value that arises by partnering with communities innew ways, both in terms of enhancing research qualityand changing the landscape of research and care forpeople living with mental illness.AbbreviationsBD, Bipolar disorder; CAG, Community Advisory Group; CANMAT, Canadiannetwork for mood and anxiety treatments; CBPR, Community basedparticipatory research; CED, Community engagement day; CIHR, CanadianInstitutes for Health Research; CREST.BD, Collaborative RESearch team tostudy psychosocial issues in bipolar disorder; KT, Knowledge translation;QoL, Quality of life.Competing interestsThe authors declare that they have no competing interests.The Collaborative RESearch Team to study psychosocial issues in BipolarDisorder (CREST.BD, www.crestbd.ca) is a team of researchers, clinicians, andcommunity members dedicated to developing knowledge on bipolardisorder. The team includes representatives from a variety of healthdisciplines, including psychology, psychiatry, occupational therapy, nursing,criminology, genetic counselling, and mental health advocacy. A guidingprinciple of CREST.BD is to foster and promote ‘Community-basedParticipatory Research’, whereby individuals with BD and their familymembers are active participants in research and knowledge translation.Author details1Department of Psychiatry, University of British Columbia, 2255 WesbrookMall, Vancouver, BC V6T 2A1, Canada. 2School of Social Work, University ofBritish Columbia - Okanagan, 3333 University Way, Kelowna, BCV1V 1V7,Canada. 3BC Mental Health & Addiction Services, Provincial Health ServicesAuthority, 70 Colony Farm Road, Port Coquitlam, BC V3C 5X9, Canada.4Faculty of Life and Social Sciences, Swinburne University of Technology, POBox 218, John St. Hawthorn 3122, Australia. 5University of Toronto and theCanadian Network for Mood and Anxiety Treatments, Toronto WesternHospital, Main Pavillion, 9th Floor Room 324, 399 Bathurst St., Toronto, ONM5T 2S8, Canada. 6Faculty of Education, University of British Columbia, ScarfeBuilding, Room 2522-2125 Main Mall, Vancouver, BC V6T 1Z4, Canada.7Department of Psychiatry, University of British Columbia, 2255 WesbrookMall, Vancouver, BC V6T 2A1, Canada.Received: 7 February 2012 Accepted: 4 August 2012Published: 10 September 2012References1. 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