Transcript of "Best Practices in Community-Based Participatory Research (CBPR) and Community Advisory Board (CAB) Development"
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Hello, welcome to the third of four health equity webinars offered here at Montana State University. My name is Sue Higgins, I'm a community research associate with Montana INBRE and the Center for American Indian and Rural Health Equity. I’d also like to acknowledge our colleagues at the American Indian/Alaska Native Clinical and Translational Research Program. All three of our institutes are funded by the National Institutes of Health. Today's webinar is entitled best practices and community-based participatory research and community advisory board development and to talk about that we have some really wonderful experts with us I'm going to just start out by just quickly reading some brief bios and then they'll just present in order. Dr. Ann Bertagnolli is the program coordinator for Montana INBRE and also directs the Montana INBRE Community Engagement Core. Throughout her 20 years with Montana INBRE she has worked closely with enrolled tribal members from seven reservations in Montana to bring together tribal college investigators into the Montana INBRE Network. Dr. Colter Ellis is an associate professor in the Department of Sociology and Anthropology at Montana State University his research focuses on rural communities and applies a social psychological approach to the study of trauma Natural Resources any animal human interaction Emily Salois is a community research associate for Montana INBRE and CAIRHE she is an enrolled member of the Blackfeet tribe in her work Emily helps researchers establish partnerships that focus on the needs of the community using a community-based participatory approach to develop community advisory boards Emily's written articles on CPR and also works with institutional review boards that guide research in each tribal community and then finally Dr. Monica Skewes is a CAIRHE investigator and associate professor in the psychology department at Montana State University she works with community members at the Fort Peck reservation to develop culturally grounded treatment approaches for substance use disorder and now I'd like to acknowledge that make a land acknowledgement on behalf of Dani Morrison who is the community research associate for the CTRP. We acknowledge and honor with respect the indigenous stewards on whose traditional territories University now stands and whose historical relationships in the land continued to this day we ask the spiritual ancestors to forgive our intrusion and humbly ask for their guidance thanks so much everybody for being here and now I'm going to turn things over to dr. Anne Bertagnolli thank you sue the Montana idea community engagement core or the CEC is an integrated core among idea programs housed at Montana State University and one of those programs also is partnered with Alaska our experience has shown us that the combined core enhances training opportunities and other resources for those involved in community engagement research it creates a broader network of community research associates community consultants and community advisory boards and it draws on the expertise of a team of community academic partners who highly value the mutual goal of improved community health through engagement dialogue and collective problem solving this combined core uses a methodological approach grounded in community-based participatory research practices and these practices foster a partnership where communities are equitable collaborators in the research and it creates an environment for producing mutually beneficial goals such partnerships and community engagement practices and they also help to reduce the potential for negative research experiences that can seriously jeopardize ongoing and future research projects in rural and tribal communities specifically our combined core focuses on establishing research partnerships that follow clearly defined strategies for development before investigators commit their ideas to a proposal for example they must first talk with the community research associates and navigators and core personnel to determine if their ideas are a good fit for communities and if they have researched and are familiar with community engagement practices we also are concerned that they are aware of and sensitive to cultural practices and that their project offers benefit to and is in the best interest of the community with which they hope to work the combined Corps also focuses on supporting and developing community research associates and navigators by providing resources training and professional development opportunities to help them as they guide and mentor both researchers and communities and now we have the opportunity to hear from those who work directly with it with the Community Engagement Corps and to learn from their experiences thanks so much Ann and now here is doctor Coulter Ellis hello my name is Coulter Ellis I am faculty in the Department of Sociology here at Montana State University and I want to just talk about some tips for success so you know I do my work in collaboration with dr. Kelly Knight who is also an associate professor she's also my wife and so and all of much of our work is done in collaboration with Emily Salas and so I hope that she chimes in if I've well maybe when I leave something out I want to talk a little bit how we started Kelly and I started with intensive statewide qualitative interviews with folks who we call victim service providers and so we were new to Montana and it was really an exercise in getting a sense of what our surroundings were about and finding a project and one of the things that came out of our project was the idea of or the issue of secondary trauma and I point that out mostly because what much of what we did was really from the ground up we didn't go out looking for this it was something that really emerged from our interviews that we did across the state it's important to note that most of those interviews were not were done in predominantly white communities so they weren't done on tribal land we returned to Montana State University we gave presentations to folks at Kerr and it was at that point that Emily heard some of our work and suggested that we make it trip up to to the Blackfeet reservation and meet people who were doing work similar to what we were presenting on so we met with providers from a variety of different kinds of organizations folks who work in substance abuse Social Work Child Protective Services law enforcement and so so we met with those community members really without a whole lot of agenda we talked a little bit about what we were doing about their experience it wasn't irb-approved it wasn't research in any meaningful sense it was really just an opportunity to sit down with folks tell them a little bit about what we were about and to sit and listen to the issues that they were experiencing we were invited after those interviews to or after that time we were invited back up some of the folks up there were having a historical trauma workshop and training and we went really as full participants there to there to learn there to build relationships and we really was an amazing experience we really got a lot out of that and bring that up really to point out that that's the kind of thing that we did before we even started we didn't go into the community with any sort of agenda we really we waited for an invitation and when we got the invitation we really just focused on building relationships and seeing if folks were interested in a collaboration and so we we then with in really close relationship with with what Emily with Emily's health we met with local organization leaders and really just saw the extent to which they were interested in working with us and those folks that were interested we developed community advisory boards and I'll talk just a little bit about how we ran our community advisory boards we have two Community Advisory boards that work on roughly the same issue so we work with we work on the issue of secondary trauma we have a Community Advisory Board made up almost entirely or made up entirely really of victim service providers in in browning with our American Indian cab we meet at a local organization so we have it's moved around a little bit but for the most part after our first couple meetings which were held at a hotel there was a spot that became available that we were invited to hold our community advisory board meetings at and so okay so that's where that's where we hold our organization or hold our our meetings we run about hour and a half where we run to our meetings we have about a half an hour of flexible time and so folks can come you know we started about five o'clock after people get off work but not everybody can brush out there so we folks come out they sit down we chat we check in we have just really like it's a lot of fun it's a lot of laughter and it's a lot of fun and I think building in that flexible time is really one of the best things about our Community Advisory boards one of the reasons that people show up I think we then have a blessing of the food and we share a meal both of those I think are also really important we provide the meal which isn't easy like logistically that takes a lot of time we then have a two minutes of silence or a mindfulness practice and I think this is really important for those of you that are thinking about starting a cab having a really strong agenda people are busy people have a lot going on and it's important to not waste their time in addition we have a gratitude practice where it's maybe not that it's maybe not the most sentimental of all but we give we give everybody who shows up gets eighty dollars at each time and for community advisory boards if you're trying to develop a good one I think it's important to do your best to offset people's time people are taking time out of their family they've worked all day you know some of them may need to arrange childcare they have to travel and doing the best that you can to offset those costs is really a critical part of it and I would argue if you're unable to pay your Community Advisory boards I don't know that I think it's a good idea to do it I think frankly that that's a that's a critical piece of making these successful practices we have a parallel project that we do here in Bozeman in Gallatin County and I'll talk just a little bit about the differences because I think I'm one of the only folks that runs both Community Advisory boards in in in a tribal setting and in a predominantly white setting so in Bozeman we do things slightly different we meet at Montana State University we meet in a cold conference room which is great in some ways but it's definitely really different we also share meal we have two minutes of silence the two minutes of silence mindfulness practice actually goes a lot more rocky in Bozeman they don't like it as much but we do it we make them do it anyway we have a we have a particularly strong agenda we also pay $80 in cash well we do it either in cash or a gift card if you're working through the university you're working through a large organization you'll know that coming up with 80 dollars cash and finding receipts --is can be really complicated and so yeah okay how we think how we get things done so we we leave the meeting and we set the agenda I think that's important I think that holding the space is the way that I would talk about it is is important the it has to be a collaborative process but at the same time like there has to be an agenda that has to be something that is getting done that said balancing that with also brainstorming ideas and collaborating but like we do the heavy lifting so when it comes to getting things done it's deeply collaborative it's very bottom up however you know when it comes to making sure that the meetings are structured in my experience community advisory board meetings can easily get away from you they can easily turn into you know a setting where you know people are there's a lot of chitchat there's a lot of community building but there's maybe not that guiding goal and so if I was giving suggestions which I am to people who are interested in community advisory work one of the things that I think is important is to make sure that the agenda is set make sure that it's modifiable that it is done in collaboration but that there has to be an agenda that's going to move the project forward otherwise I think it's really easy and it's really easy to get stalled in the work um because there's a lot of voices I mean that's the that's the practice I think - it's important to remember that the people on your calves have real lives that they have worked likely a whole day and that they are taking time out of their lives to help you with your project and they're not there to run your project necessarily it is I think it's your responsibility to do the heavy lifting to do the organizational work - and not to expect that you know these people who are real people who are there who are there showing up to these meetings because they really care about the project and they're dedicated to making it work but I guess in my sense it's my responsibility as the faculty member I get paid to do this work and so I have to do the work and Kelly has to do the work and you know the we can hope and work and collaborate with the folks that were that were we're working with but when it comes down to the nuts and bolts of giving things done I think that it it falls on you so other thoughts keep things simple keep your expectations really clear and reasonable work closely with your community engagement person so in particular working in tribal settings we we could not possibly do this without certainly without the invitation from Emily but we couldn't do it without the ongoing support that she gives us and then for their time and I think most importantly it's really critical to give more than you take so this is this is absolutely 100% the case in a tribal setting but it's also true in a predominantly white setting like most like most of the rest of Montana they have to leave with something that is tangibly relevant to them and their lives and if you're not able to give them that then that's you shouldn't be doing this work okay so I went through that pretty quick Emily I do you have anything to add perhaps at the end but what I what I would like to add is that you've been really modest you've been able to engage the community and that's the heart of what we do and the work that you've done has developed a manual along with the Community Advisory Board that there's been international request for we call it our toolbox it's done trainings for the college and excuse me a couple of other trainings and some of the interviews that I have been a part of his brought healing he link to the community so it's like thank you for your work and I thank Kelly as well thanks Emily to tease and take teasing for sure definitely it sounds like Emily we can hear you well now and Emily's going to she's with us from afar and we have her slides here hopefully all of you out there can see her slides and she's going to talk through the slides that she has for us here it starts with a slide that you presented up the map of tribal nations in Montana Emily okay first of all I'd like to say thank you sue for your introduction but I'd like to say I'm not an expert on anything and I'd also in regard to publications I was part of a team with dr. Patricia hook up Tony Tripp Weimer and doctors Claire and winner in co-authoring an article on cbpr so so with that I just want to add those Corrections but thank you you elevated me to a new step yeah you know you can see the map here is of the tribal nations or reservations in Montana there are seven sovereign nations in the state and their reservations are home to 11 Montana Indian tribes in total only one tried the little shell trip law does not have its own reservation you know what one of the things I'd like to point out there was a study conducted by the state of Montana that American Indians in Montana have a life expectancy an entire generation less than non-natives which is 20 years we don't we live 20 years less and non-native people in Montana either studies that point out that cbpr research approach to address health disparities make sense when community members are actively involved in all aspects of the recent process as equal partners when utilizing this approach in Indian countries it support is really important I think to pay attention to relationships respect and reciprocity I'd like to say in my position I need to point out that ferry Young who was a too early research associate and bertagnoli who was program coordinator and Ellen Harmsen with TI and research core director had established relationships with tribal colleges long prior to my employment and I just follow in their past second slide - thank you it I just turned it Emily okay so when corporate spoke he talked a lot about relationships and like I said that's that's the heart of of what we do this community based in cbpr but one of the things that i would like to advise people to do is to learn about tribal history but over and above that the current tribal status there's a lot on the website or just visiting with people or students at the university that that have a lot of knowledge and of course take time to build a trust a mutually trusting relationship might want to think about appropriate self disclosure people will probably tell you about their family or their community and so being able to do some self disclosure if you're comfortable with it would go a long way in developing relationships first pay attention to cultural humility which invites you to look at your own potential biases it's um yeah I'll just stop there and to visit tribal communities you know I I've talked to several people who have maybe drove through tribal communities but don't stop to visit people or to attempt to develop a relationship that's important to be able to do that a lot of times tribes are invited to come to the University for meetings but it's be nice to have meetings on reservations as well credibility stress most people are probably aware that term I just as weird as a in my position I just want to point out that if I accompany someone to a visit to the reservation or in vitam that there's potential if they do something wrong there's potential risk to my credibility and credibility of your community advisory boards so so I just want to point that out the other thing is that I think about us respect respect for the tribal ways of knowing how a lot of times how we acquire knowledge and about the world around us and which include can include different ways of seeing and understanding [Music] understanding the world around us so know that we don't all in the world the same way we may have incredibly different ways I learned more about the tribes history I said that a prior and current tribal status respect that their me may be a historic distrust of research and researchers from prior experience I know I worked for for the Blackfeet tribe for many years and beginning in the late 5th and can tell you some horrific stories so just know that there may be a historic distrust not only for the research but researchers as well respect the difference in values for instance you may make an appointment to come to the reservation or go to a reservation to to meet with a particular board or individuals and if an elder passes away my guess is that your meeting will be postponed reciprocity and Colter pointed this out is that you know sharing resources providing a reasonable I instead of pay I like to think of it as an honorarium that the guidance and wisdom of your community advisory board members is important I I'd like to I always like to talk about dr. Craig Willard who's a professor and the head of department of civil engineering he came to brown to meet with the Tribal Council be our water had been throws for about six weeks in the street in certain neighborhoods and I met with him prior to coming here and told him about our dilemma he had worked in municipal water systems or had knowledge and he came and met with people on the council and shared some of his wisdom and expertise well here he took time to visit with them the black community college president so respect the guidance of wisdom of your community and advisory board members I said that before and I say it again and I've talked about appropriate self disclosure so with that I think I went through it although I talked slow I think I did that in ten minutes Emily we wish you could talk for a couple of hours great nuggets of wisdom and we really appreciate you sharing them and if you wouldn't mind staying with us until after Monica speaks we can all have a conversation together so thank you Emily and I'm turning things over to Monica now okay Monica skewers I'm in the psych department and I've been working up at Fort pack for the past six years and my project focuses on substance use and have also been working with Emily who really helped me a lot in so many different ways that I'll talk about in just my you know sue asked us to do our top ten tips so here are mine the first one is always to listen and you know this has been touched on in the other you know with other speakers as well but to listen to understand to listen to understand where people are coming from so you listen to the tribal history of the community of you know the relationships that existed long before you got there so when we started our project up at Fort pack we visited and and met with people and went to community events for about a year before we collected any data and care we were lucky to have that opportunity but I think that was super important because the project that resulted was different than if we had just had our own ideas going in there we really listened to what people were saying that they needed and wanted and how things are and so that shaped our proposal the other thing I think is really important in tribal communities especially is just to be authentic to be who you are except for a pack are incredibly tolerant to they're tolerant of people being being weird you can be as weird as you want to be you just can't be fake I you can't have an agenda you really can be yourself and even if it's a from a cultural background they don't understand you can talk about it as long as you are genuine and authentic and real Emily Ann Coulter also talked about this but I'm to respect the local expertise um folks know stuff I mean they know what causes certain problems they know what fixes certain problems and you know in our interview studies we were shocked to find the top recommendations are also supported in that so there's a great deal of knowledge and expertise and if you work with it and try to maximize the strengths it just goes so much better along with um being authentic is being honest and I think particularly in terms of what you can offer so we go into these projects and into these communities hoping that it will be a lifelong relationship hoping the grants will keep coming that we'll be able to do this forever but don't promise something you can't deliver so if you have one year of funding just say look I have one year of funding and I would like to do this project here and then people can tell you if they want that or not you can say I hope that I'll get an extension I hope I'll have five years but I don't know what's gonna happen or I don't know how that Grant is going to do and in my experience folks in the communities understand and they're able to make decisions they're able to give informed consent as long as they know what it is that they're getting into being honest about your expertise like people asked me when I first started going to Fort Peck they asked me if I could focus on children instead of working with adults who have substance use disorder but that's not my expertise so I said you know that's not something I know how to do that's not something I'm really qualified to do but here's what I am qualified to do are you interested so and then along with that is to be flexible so I don't have expertise in children searching with kids but it's something that I'm willing to learn so I could incorporate you know families a little bit more so if they kind of go together being honest about what you have to offer but your resources about your expertise and then also be flexible in terms of if people are saying look you know there's this big issue that's coming about right now and we want some attention on it you can learn new things and you can you can flow with that really important is nurturing relationships as Emily said relationships are the key to success in terms of all this and it can be really difficult when you're working with a community that's geographically distant from where you are but there's lots of ways to nurture relationships I've found social media to be really useful I'm Facebook friends with a lot of my community partners and I know what's happening with their kids I they know when my parents come to visit Bozeman we go hiking I mean it's just those types of interpersonal connections that can be maintained in lots of different ways but visiting is really important making sure that you're present that you work in a little bit of time to just hang out to hang out at the tribal college library or the restaurant that everyone goes to and be seen and also just to visit like emily talks about the importance of visiting it's really major and so many like innovations and research research innovations can come out of that time staying connected and goes along with that and making sure like just to drop a texture oh what's up and make sure that people know that you know I haven't been able to come up this this month the roads were bad but I'm thinking of you another tip I have is to be optimistic and this can be really hard sometimes especially if you're dealing with trauma and substance abuse and violence and a lot of the things that we research because they are priorities to the community it can feel it's heavy you know and it can feel really difficult and finding ways to stay optimistic like focusing on the good things that are happening making sure that you know while you're trying to serve people who are having a hard time also keep it in your mind in your heart that there are people who are doing really well and keeping hope I mean it's emily has taught me that it is one of the core native values is hope and optimism in making sure that that stays alive communicating well communicating the long term goal the short term goal the agenda and the meeting and that's where a Community Advisory Board can help and also the community research associate can really help because there are these cross-cultural differences and you may think that you're listening but what you're hearing may not be what they're saying so having someone to help you listen and help you understand what's being said and be really helpful and emily has been so important to my project in that way after I've had a meeting with someone she's pulled me aside and said you know what they're not interested I'm like really I thought they were she's like no no they were telling you not um so that can be really important and helpful as well and then I think most importantly is just keep showing up I've had some early on I had a couple Community Advisory boards where I got really discouraged I had at one community member tell me not to bother who actually said our people are beyond saving and we should just write off a generation and I was crushed I was heartbroken and I know Emily remembers this to you we were just does dated and we didn't we had to process it we had to take a little bit of time it turns out the person I think it had a really bad day and we came back a month later and the same person that told us don't bother maddis with huge hugs I'm just like what are you coming back so I would say if you keep showing up and you say look I care and I this is important to me and I'm gonna keep coming back and we can be flexible we can change the project but that I think sent the message to folks that they actually did respect us and want to work with us I had another experience where I went to the local substance abuse treatment center and it was kind of given a lecture about outsiders you shouldn't come here and tell us what to do that same person that gave me that lecture is now one of the most active members of my cab and is a huge advocate and supporter of our project so that I think we were being tested at first particularly over that first year and when they realized that no we really are into it like we really do care and we're really gonna keep coming back then we have a lot more community buy-in and support now and that's crucial for the success of the project those are my tips Wow Thank You Monica there's so much great material here we're gonna open it up for questions I would like to just add a couple quick things I am a community research associate working in non-native communities in Montana and I would say absolutely all of these principles apply across the board it's about respect creating relationships learning about community assets finding the trusted elders in any community and learning about the fabric of the community spending time there for me I go to a lot of watershed group meetings work with conservation districts constantly they're great connectors and our researchers have really really done well by working directly with conservation district agents and you know going to the local fair to the library just spending some time before you even develop your project get to know that community and these are just wonderful nuggets of wisdom and I want to thank all of our speakers and see if there's some questions I'm going to look at the chat function now but maybe if we could get a question from the room and I'm gonna work this little unit here quickly there we go Emily you have a question please pick up okay in case that question wasn't heard I'm not sure how this microphones working I'm pretty sure you could be heard Emily but the question was really the logistics and steps for setting up a cab and how you selected people I'm Emily you want to jump in there I I can I can try to do that one of the things that I think about developing a community advisory board is you know well for one thing this community advisory boards I would look for people who can provide feedback into aspects of research including articulating you know need to the community helping develop research questions recruitment plans reviewing the study assessments and procedures and I guess what's really important is the ethical considerations around her research so that they can do that as well and provide different perspectives into the data interpretation you know there's not much in the literature about community advisory boards in Indian country and so I think about considering non-traditional dissemination methods of research so what I what I do and it's really difficult to articulate this because communities are so different but I think of the I go to tribal colleges and I can't say enough good thing about tribal colleges Embree works through tribal colleges there every reservation in Montana has a tribal College unlike other states so usually the needle surface from the tribal someone at the tribal college and and so in knowing the community before you set up try to set up a Community Advisory Board interest and aware of the health needs on the project when I'm I think about cab members who have an interest and aware of the health needs in the project subject I look for a diverse cab and I pay attention to age and spirituality I try to have some people who are traditional and in practice the traditional spirituality and then some people who may be Christians and but one of the things I'm really careful about is and politics being aware of tribal politics and and try not to get the the the racial transit project involved in tribal politics I don't know if that does that help at all thanks Emily hey I I have a just chime in there too right so logistically like just like cold logistics the the way that we set up our cabs and we did this both in our tribal community and then locally is we really I think a lot of what Emily said about like going around and identifying group of people from different organizations who we suspect my hat mistake having informal conversations with them and then we invited them to we invited everybody to one central meeting where again we served a meal and then we gave sort of a general overview of what we thought we could offer not necessarily like like solutions but like you know the these are the this is the problem that we think you're all talking about you know that we can offer we have these research skills that we think might be useful who would like to collaborate and work on a cab and some of the folks there wanted to and some folks didn't and that was fine and that I think was really useful and I had one more piece that one so we did we ended up with seven folks each from different organizations and just perhaps because of Emily's skill we ended up with a really fantastically diverse group of folks think it's I think it's a mistake sometimes people make thinking that everybody in a rural community is the same or everybody in a tribal community is the same and they're totally not and being really responsive to the diversity of the community that you're working in is as critical as anything else and I think that that's one of the reasons our caps have been as successful is their same we have eight people at Fort pack on this cab and you know there have been a few key people who've been on the cab for years but we've also had some come and go like we had especially at first we had a few different people come for one meeting and we're just like this isn't for me and so we found somebody else so right now we have a group that's all very motivated and committed and interested but it took took a year or two to really get to that point great thank you I think that's a big step is finding finding those members we have a question from a participant asking are there any ideas on how to reach tribal college teachers who might be interested in working on research projects this has been difficult since the tribal college teachers are so very busy any comments from our speakers on that you know I would I'd contact the tribals each each tribal College has a tribal president I contact the tribal president I think that's a good idea and one thing I had to learn when I started doing this work is that email is not the best way to get a hold of people people don't respond to their emails especially if they don't know you so that's not the first thing that you want to try yeah and I I think from there like try to set up a meeting and maybe just show up yeah knock on a door is is huge I ended up at at the tribal college in our in the community that I work in and ended up teaching a class just ad hoc you know like like I think I I think don't don't mistake I mean they're profoundly busy and you have to respect the fact that they might not actually be interested in what you have to offer and that has to be okay too right but they might be totally interested if you show up and I think that that can be huge can I give an example of something Kelli Ann Coulter was going to have a a meeting and so their research assistant from MSU was calling people in the community to remind them of a community meeting and they said dr. so-and-so are are coming to meet and so one of the ladies there thought oh my gosh I missed an appointment with my doctor and the second one said dr. mother-in-law had been really sick and so here we usually don't call the professor's doctor so I - now I call it instead of having the research assistant call so we know they're that way anyway gives me a chance to visit and find out how their families are yeah hello everyone right about this place in our webinar is where we had some technical difficulties and we had a very nice ten-minute question answer session which unfortunately did not get recorded so we'll leave it here thank you for listening and please get in touch with us if we can offer additional information on CBPR and have a great day take care oh and also watch for a link for this webinar at our websites listed here. Take care!