 Thanks for your patience with us this morning. I wanted to welcome you all to the Orange Public Library. If you get a chance later to check it out, it's a beautiful building. All right. So I'm Jackie Tran, and I'm with the Orange County Alliance for Community Health Research, which is OCACHR. And I'm happy to welcome you here this morning to the first in our series of workshop trainings for community research. So welcome. The Community Health Workshop series is a series of five workshops that are intended to increase opportunities for community and academics, department, and research, especially regarding health issues here in Orange County. And the key piece of this is really engaging all of you and faculty as well to engage in community-based participatory research, which is CBPR, or CBPAR, Community-Based Participatory Action Research. And this is being brought to all of you again from the Orange County Alliance for Community Health Research, which is a new partnership that was established here in 2011 with funding from the federal government through the National Institutes of Health, and these are all of the partners. You have our lead agency, which is the University of California Irvine, the ICTS, which is the Institute for Clinical and Translational Sciences, Cal State Fullerton, the Children and Families Commission of Orange County, the Orange County Health Care Agency, Orange County Asian Pacific Islander Community Alliance, the CAPICA, which I'm also a staff member in the Public Health Foundation Enterprises. Really, the reason that this is so important to Orange County and the focus of this grant is really to look at translational science. These are a lot of really big words, which are all going to get demystified today. And the idea really is bringing research from the bench, the clinical research, to the bedside and then out to our communities. And I don't know if you all know, but right now, the average time it takes for the discovery of a brand new drug to reach our communities is about 13 years. Maybe in some health issues, 13 years isn't a very long time. For some health issues, that's a very, very long time. And too long to wait for a treatment that'll be effective and possibly provide good quality of life. So what these CTSAs, or ICTSs, are meant to do is to help really make that happen a little bit faster, a little more effective, and more appropriately when it reaches out to communities. So we don't just want to get it out faster, but be all wrong. We want to do it right. And a big piece of doing it right is really engaging community, whether that's asking questions in focus groups or encouraging recruitment in clinical trials so that we know what will happen if it gets to the community sooner and faster. And we are one of 60 CTSAs in the country. There are about six in California alone, which makes this a really rich state in terms of resources. But it's also about getting all that information out to all of you who are working in engaging community and letting folks know what resources are available. It's kind of like knowing there's a sale, but nobody knows about it, so no one benefits from it. So that's why you're here today, and it's very important. This is a real technical slide, but really what it's saying is how do we get information and discoveries out into our communities sooner and more effectively. So the project itself has three major aims, and one of the major aims is the workshop series, which you're a part of today. And this is going to be the first of a set of series. There will be other trainings in the future. So for those of you who have colleagues who might be interested or those who've registered in our wait list, it's going to be future opportunities. But this is the first series with the full five workshops that we'll be engaging in. The second aim is to gather community leaders and community members with faculty researchers to talk about pressing issues in Orange County. So the first group that actually has gathered has discussed low birth weight issues in Orange County. And some of the opportunities we're hoping to build on is to engage in proposals to address the gaps in data that we have here in Orange County. And Shannon Pazola, who's in the back, is my colleague and we're community research advocates, they call us CRAs. And our job is really to reach out to and engage folks. And she, as well as another colleague of mine, Lamore, are the folks that are facilitating these work groups. The other exciting thing that we're hoping to bring to all of you here in Orange County is the web portal. This is going to be the website link. And it's going to be information specific to Orange County in regards to health issues, as well as population-based data. And so it is under construction right now, but Shannon is actually working, as we speak, to get it up and running and to have resources for all of you about the things that are going on here in Orange County. And the truth is, there's going to be gaps. Not everything you click on is going to have pages and pages of data. Some things you click on are going to have pages and pages of data. But the idea of facilitating these workshops is also then to address where there are places where we can work together. To do research, to get information and to put information about our communities and the needs onto the map, which would be the website. So that is going to be a living, breathing tool that's going to evolve and grow through the years. And we hope that shortly you'll find that there are some great resources you may not know about that are secrets here in Orange County about the work that you're doing here in Orange County. Our big group, and we didn't get all name tags, although they're a little name tents on your desk. They're a little bit small. So if you're interested in putting your name out there, that would be great. And I'm going to ask you to start getting up out of your seats and using your Himiko cards to make some new friends, okay? One of the key things that we want you to get out of coming to these meetings is just to sit and take notes all day, but to network and meet people who haven't worked with before, engage with agencies that can leverage the work of your own agency and to make new friends, okay? So we're going to get out of our seats. We're going to learn about others in the room and meet new people. And we're going to see what kind of folks you can find in the room, because this is also about how do we partner and create other relationships for the programs that we represent, right? And so, you know, there's no rather wrong answer. The idea is just to get up out of your seats, maybe turn to your right, turn to your left, turn to the person behind you, introduce yourself, tell them who you are, what the communities you may represent or work with, and the agencies that you come from. And as you find, if there's somebody that fits a box, write their contact name down so you know how to get a hold of them later, okay? So we'll do that for about 10 minutes. Listen to others, but also really hear others, right? Ask questions, there are no silly questions. This is a space to engage and ask questions of each other and of our great speaker today. To check out assumptions, so we all know a lot of great things, but there's also a lot of awesome things we don't know. So think about that. To respect different opinions, perspectives, and experiences, they're all valid. To seek clarity and clarify, right? Don't make assumptions. You may sometimes use the same words, but completely talking about different things and that's in English, right? So let's seek clarity and then to turn off our technology. So if we can agree to that, is there anything else folks think we might need to add for our group expectations today? Okay, so again, we're here today for the research and the community workshop. And really the goal of this is to build academic and community research partnerships to address the health issues that are going on here. And health is a really big word. We're not just talking about clinical health, we're talking about mental health, right? We're really talking about well-being and a lot of things can fit under that. And we're not specifically talking about any health issues today, but looking at ways that we can use tools that can help our communities better reach health in this county, right? And really as we talked about earlier, we're looking at transdisciplinary translational science, right? Taking bench to bedside to community. And really ensuring that the discoveries that are made in the labs are actually having an effective benefit in our community. Our key training objectives are here. You can read that, they're all in your slides. So I'll think, I need to read them for you. And then our overall goal for today, this is our outline, and so we're gonna get busy real quick in the next couple of hours, is to really talk about research, different methods and designs, as well as CBPR, and how that actually is a tool that might be effective for all of our communities. And then we're also gonna dialogue about health issues and health topics that are important to us in ways that we can possibly use the research designs, methods, and tools that could help our communities. And then at the end of the session, we're gonna talk a little bit about the ethics of conducting research. So everybody thinks research is so awesome and great, but there are also a lot of concerns and things that we should consider. And so we're gonna talk a little bit about that as well. So today I am really pleased to have Dr. Sora Park-Tanjasere here. She is a professor in the Department of Health Science and the director of the Health Promotion Research Institute at Cal State Fullerton. Her teaching and research focuses on community health promotion amongst diverse populations, particularly Asian Americans and Pacific Islanders. Her scholarship applies community-based participatory research principles to understanding and addressing cancer health disparities, including tobacco prevention, cancer early detection, and survivorship. She is served as the principal investigator or co-principal investigator of over a dozen, two dozen, sorry, extramurally funded cancer-related studies, including the co-principal investigator of the National Cancer Institute-funded Community Network Program Center, WINCART, leaving an islander network for cancer disparities, for a network for cancer awareness research and training, and the RO1 support our women's study to promote path testing among specific islander women. Her research has been published in peer-reviewed journals such as the American Journal of Public Health, the Journal of the American Medical Association, Health Education and Behavior and Health Promotion Practice. Dr. Tanger-Siri received her master's degree in biochemistry from UC Berkeley, and her master's degree in doctorate in community health in the UCLA Fielding School of Public Health. Please welcome Dr. Tanger-Siri. Huge tall order. I don't know what you guys, you know what you got yourselves into. But normally, whenever I've taught things like research design, community-based participatory research, multicultural issues, ethics, and separate events, about three different classes. So we're gonna cover in three hours, but I think I usually cover in about a year and a half in our master's program. So one, after this, I have a feeling we're all gonna feel very tired. And two, you should all get a degree. Sorry about that. Okay, okay, great. So I would like to start off. Normally, I really want to get to know the folks who are gonna be spending three intimate hours together with me, but I realize if I did introductions the way I would want to do, we'd kill about an hour and a half. So rather than do it, I'm gonna do a short cut and try to get to know each one of you as we go along. I've been jotting names, if you've got a little, those little tiny, I thought my mom's with little tiny name tags in front of you. But I do wanna get an idea of, why are you here? What are you hoping to get out of this? Because I wanna make sure I try and meet your needs. Hopefully, I don't know, check my assumptions about what we do or do not know. So can someone give that, yeah, why are you here? I wanted to participate because normally mental health is the last person on the phone. And it has, and even though it is the last field, health field that's mentioned, it used to be the root of most of the health problems that are out in the community, if not many of the problems that are out in the community. Okay, so mental health specific, but certainly for all other, for issues as well, right? Trying to address needs that are invisible or not getting attention. And I'm scribbling and you'll now see why the students complain because you can't read my writing. Yes, yes. I believe that the research in general in public health is not as common. And especially when it comes to community research, and we need to point it goes to other areas where the research can be a broader spectrum as well as the gaps can be identified so the foundation can be more resourceful. Good, okay, yes. I really have to find out to get more of a foundation for what I do, to understand it and maybe increase my work with all the participating, or the community based research that I do. So I want to need more foundation for myself to understand that and how it can improve my work. Okay. I'm trying to learn about maybe different ways to engage the community that are exciting and productive in a community that might be suffering from fatigue and why isn't anything happening yet. You keep asking our questions with us questions, but I'm worried that this'll be good. A researcher pass? Are you? Yes, okay. Nice. Well done. I'm transitioning back into this field of health and looking for opportunities and information. Excuse me, so I have to hear, yes. As part of the community based organization, I wanted to learn how we could collaborate with institutions and researchers to report the information that we are already experiencing in the community. Good, so the office kind of looked what the reader's perspective was, right? How do we engage each other? I just did all that. Did oh, okay, did oh that, did oh that. Like it. Anything else? Yeah. In addition to many of those, I wanted to also meet others that are working in the community in different disciplines. Do you think we covered it? Who else? Yes. And I'm here because just as a community volunteer, I want to make sure that I know where to go and how can I help. So you guys can reach it on your own. Anything else? Yes. One other thing that I want to get out of this field is to increase my understanding how to better access to how to reach populations. Especially at this moment, we have one, my agency is serving immigrant refugees populations and then we have some time, the issues of how to reach them in the area that it's so hard to go and also try to get involved with those people in the research process. It's also the issues that we have in place. You said you're from a community organization? Yes. Okay. Yes. I know you're running a lot of space there, but... I didn't believe it. One of the reasons why I'm here is, you know, we really want to see how we can more effectively impact the community. But most importantly, really assess if the programs and services that we're providing are able to create that impact and if we do need to make any adjustments and changes that we can do so quickly and, you know, most effectively with the resources that we have been allocated. Mm-hmm, mm-hmm. Evaluation, a lot of evaluation. Does that see one other? Maybe. I have no idea. You don't have much space, though. Oh my God, space, look! I don't know what you're saying is so close to where we are. There's a community organization that's doing evaluation projects and it's being monitored by an outside agency. Actually, you see it, right? Mm-hmm. And in order to get it together. And the way they're going at it and setting up this research design to monitor this project for the next few years is so involved and so intriguing. And I'm getting my doctorate dissertation right now and I have my own project, but it's nothing like what they're doing. And so I'm trying to understand from a different standpoint in public health, particularly in our public health, exactly why we're going through these degrees of checks and other balances. I know it won't be a research that I'll recover, so that's part of it. What's the second part of it? Is that sometimes I find that, well, I'm just trying to find out where the internal context is. But I'm trying to get the ability of always not getting inclusiveness. Well, yes. I would like to participate in identifying cultural need in our community. And to find skills to communicate and have a better relationship. Question always. Go ahead. Yes. I want to learn how we can be culturally sensitive while providing evidence and scientific based research information to the population, the target possible regions that we're trying to help out. This is such an unambitious group. Oh, well. We just want to save the world. Anyway. Oh, my God. I am with oral health, and like she mentioned the back side, like mental health is not something that's addressed and so is oral health. And I work with an organization that we do a lot of school programs and I'm here to learn how to network and... How do you work? How can that work? Yes. And improve my ability to do research. I mean, are there working, right? Isn't that working? Okay, I'm going to stop this group. Otherwise, I should know. Hey, I'm going to do these things. Okay, let me make sure that I put these back. So I can keep a track and see what we're knocking out as we do this. As we do that, talk a little bit about what you want to get while you're here. Can we talk a little bit? Oh, this was my... Just to find out, what is the level of knowledge? I should say level of knowledge. What are people's backgrounds and research? So how many people in the room are researchers? If you, just with your hands, are university researchers? Because I'm also a faculty in practice and I'm just everything. Oh, fabulous! Okay. I'm just going to do some... I should admit that question. Not only researchers, but how many of you do research and your everyday lives is a part of your job? Right? We're good to do. How many of you are service providers? Yes. Okay, I would say that's definitely the majority of you. How many of you are administrators? Okay, good. What did I forget? Policy makers. No policy makers. Advocates. Oh, yeah. Good. Students. Students! Sure, absolutely. We love students. What? Evaluators, okay, like that. Evaluators. Interesting. So definitely, and for the service providers, how many of you, well, I should say for everyone, how many of you are from community-based organizations? There we go. Versus public, county, and hospital or other, okay? Any other industry, for-profit? Industry? And then, no, universities. I gotta cut your eyes. Interesting. Okay, good. You are there. I love to talk with, because for the most part, we're all the people who actually do the work, right? So, I don't have to talk about the ivory tower, and I think none of us live there, right? Very few. I did what we do, we always try to do it. So, what does the word research mean to you? Investigate. Investigate, okay. So it's something that we're looking at, we're wondering about. What else? Yes. I heard something. Yeah? Papers. Papers, okay. We're not just wondering about it, but we're trying to get something done with it, right? What else? Okay, so it's definitely about looking at things, exploring things, understanding things. Oh, I've got this. This is the duality here. We've been the people who are like, like to wallow in the interesting stuff, and then we have the people like, let's write the grammar, let's write the article, let's do the presentation, right? Game. Okay, so there is some in the middle, right, besides understanding and wanting to understand, but is there's a process, right? And identifying what kind of information we want. A lot of us take data, but there's a lot of different ways to answer questions. What else? What else comes to mind when you think about research? Experimental design. Oh, good. There's not just what we're trying to collect, but how we want to do that, right? And I think that some of the biggest questions that I always get is, well, how are we going to show that it's more effective, right? What's the comparison group? Are we going to randomly select or randomly assign? Yeah. Maybe. So it depends, right? So there's not only what we want to collect, the data-wise of how you're going to do it, from whom, right? What else? That comes to mind. Report. What? Report. Report, reports. Oh, okay, great. So I'm assuming towards the end, you mean report? Okay. We're going to talk a little bit about the need when we do community-based participatory research. I will call CBPR. I tend to talk very quickly. So I need to use acronyms, so I can slow it down. CBPR, the idea of report, backs to communities on a report. Not just waiting for the end. I'm kind of trying to do that in the middle. Good. Anything else come up? Funding. Funding, yes. How are we supposed to? I should get ourselves, you know, to some, in our community, some support to do the kind of work that needs to come up. Great. So what I'm hearing is not only do you collect, you can pose the questions, you collect the information, you do it in some kind of way to show impacts. You want to produce reports or et cetera, but you actually then want to go and have it inform policy, I mean, inform programs. And might I say policy, but there are actually ways that we would want people who are necessarily directly in the research to be looking at what works or looking at what the needs are and supporting that with greater funding or with changes in laws or with enforcement of the healthy community health policies we currently have. So ideally, although this is going to kind of a whirlwind on CBPR, what we would love to have in this room, and we do have a fairly good diversity of our different kinds of people. This is not a presentation just for students who are the people who I usually talk with. This is not a presentation just for university votes or not just geared towards just community votes. We need to be all involved in order to make the kind of impact that we talked about wanting to get. OK, so let's get through them. OK, so this is just my point about research, action, investigation, questions, practice, reflection, evidence. What did you say? Changing the world. Changing the world, right? I think we heard all of those things and things that people would rate. Generally, about what the general steps are. I will apologize. A huge mea talk like this really is not going to be the time where we can go into some of those levels of detail. Some of me you might want in order to figure out how do you do some of these steps in what kind of context or what kind of questions. We're going to kind of take a broad brushstroke of the general phases of research, and then we will continue to revisit this as we elevate some issues that come up, particularly issues in collaborative research. So the first one is identify and define a research topic. In fact, I heard some of you say that you kind of want to get to know what about communities, right? And what are the needs? Some of you have an idea of the needs and you want to connect up with researchers. That's all about trying to identify what is the topic area you want to work in. My app arrows, they just didn't show up. They had me. OK, so number one, identify and define a research topic. Number two is about setting the research question. Everything derives from having an appropriate applicable research question. And for those of you in the room who have actually been in some of my classes, you know, I always go back to what is it that you're trying to investigate. I see Becky rolling her eyes. It's all like it was thinking of you. We'll have maybe this much about that today, but at least knowing how that process is supposed to unfold. So definitely number three is determining how to conduct the research. And who should be determining that? And what kind of conversations should we be having together to figure out what the most appropriate ways are to conduct that research? Once the research, what we call the design and methods, are set, which is all that content, then we go out and we actually collect them. And I heard several people already say about how difficult that is in communities and certain populations, right? Either because they don't know about being in target research and we want to try and get them more involved, or there's so much research going on that there's what we call respondent fatigue. There's just so much going on and we don't know how to keep people engaged. But anyway, all research is about collecting some kind of information. Only some of that information would be what we think about as surveys or measurements on people. There are a whole other ways of collecting information that could be a lot less participant of human, what we call human subject intensive, right? Observations, document review, other things. I will show you a little bit of examples today. OK, so what do we do after we collect the information? We definitely want to analyze and interpret it, right? And although this seems like something that, oh, that's just about knowing some statistics, or getting some people on board to help you figure out what you've got, this is also about trying to figure out, I think, what we said, the validity of the results. You've got the results somehow. Is it really true? Is it really what the answer to that research question is over? Did we miss something? And yes, I always say to my students that you can have the best way plans, and then you do it, and then you only ask, and you just go, like, oh, I forgot. We should have asked a different question. We should have figured out something different information, right? So the whole process of research is to find out what you know, and of course, what you've noticed, which never actually happens to me. Certainly, we have a responsibility, after we annualize the information, right, to disseminate it. I've heard some of the examples of dissemination, specifically reports, publications. I would say that there are a lot of other ways to do dissemination, and we're going to talk a lot about what communities need. In order to keep engaged in research, right, we need to engage in what the findings are, what the benefits, and how that could be used, including how to incorporate them into programs, right? And then, like I imply, since we never do a 100% job, or if we do a fabulous job, it always opens the next door to say, like, wait a minute, now I want to know, right? I figured out the needs. We've got some idea programs. Now I want to know, can we develop a new value program? And yes, start it all over again. So this is my spinning around life cycle in a nutshell. You're wondering what I do? I'm just spinning around in this circle for the rest of my life. Eventually, hopefully I'll get off this rat base and actually figure out some other things in my life. Need what people have as their general assumptions about what goes in here? Then great, I'm going to now confuse it. See, there's a heck out of it by saying that really, any way you look at research, you can break it down into these steps. So one thing that you have in your binders is a little bit more extensive way of breaking these steps down. So you could ask yourself, at the different stages, identifying research topics, setting questions, determining and collecting information and just analyzing and reporting, breaking it down to some more general questions. So for instance, what is this here? What do you want to find out about? And I am a researcher, but my area is in behavioral science. So it's kind of like when you have a hammer and everything looks like a nail. I see everything from the lens of, how can we get behavior to change? Or why are people doing that behavior? How can we add to that behavior? Or how can we have that person support someone else's behavior change? And I look at things like smoking, physical activity, nutrition, cancer screening, cancer support groups, and how do you want to get people to increase their quality of life? So the things that interest me are in that realm. Now I'm guessing for some of you who said you're into oral health, the things that interest you are questions that deal with either oral health or the things that are associated, right? About what goes on in families around oral health, what goes around eating with oral health, right? Actors and providers, you know? For those of you who said mental health similarly, right? And we have our own interests. This is not about giving those interests up, right? Because someone else said, no, you should be sort of researching something else, right? But it's trying to figure out how to be involved in research processes that reflect your interest. Once you figure out, yes, I want to know something around mental health needs among caregivers of, oh, see, this is my problem. In classes, I kind of start spinning out control. Get so excited about these areas, I should just ask you. What is your, is there an example of a mental health or any kind of example we could use? Otherwise I'm gonna start creating my own example. ADD? ADD, oh, you say that I am, no, just kidding. Yeah, no, no, no, no, no, no, no, no, no, no, no, no. So attention deficit disorder, okay, that's what interests you, it could be. Great, among a particular population? Children. Children and ADD, okay. So love it, and I love how you could just say it instantly, that's what it would be, right? What is already known about the topic, right? Well, this isn't about going out and trying to for yourself or for this area or for your community, trying to start all from scratch. What we want to do is build on past research, right? Oh, so much easier, much less exhausting. So it also involves trying to get to know, right? What else has been done out there? And then trying to figure out what those gaps are. Once that happens, what is the one question that emerges? And yes, research is all about starting big, right? Needs of the community, going smaller. Let's look at ADD among children. Now let's go smaller. What are those needs and gaps? Maybe we already know, I'm gonna start making stuff up because this is my area, but maybe we already know that there is certain level of ADD to the population, but it's about how to better screen and detect it early. Am I basically stuck completely? It can't be. It can't be. Parents do know. Okay, so maybe it's about trying to figure out what parents know. So they can recognize and get assistance and support. Okay, so now, among parents, it's trying to figure out what's the one question we want to answer, right? So you'll often see in research in inverted triangle, we want to start with the big ideas and distill them to the one question. Or maybe two questions you want to add, address. So maybe the question is, what do parents know about understanding, identifying ADD? Early signs of ADD in children. Maybe we already know that, though. And the question then becomes, what do parents know about services out in the community, right? Or maybe we already know that and we want to know, well, how well are the services being used and how can we make them better? See as a researcher, I can come up with lots of questions. And now you're gonna tell me, Sora, pick one, all right? So that's the whole challenge for all of us, right? Taking our big ideas and trying to get it down and distill it down. Once we figure that out, we're gonna talk a little bit about how we'll collect that information, so the researcher. So after the researcher's beliefs and their practical experience, all of you, I am now going to now call for the rest of this time all of you researchers, right? Because you really are. Number one is because you obviously saw someone with a B here, you're interested in it. And number two, you've all got beliefs about what the needs are, right, once you see. You've all got practical experiences. I'm sure, you're all keeping up with the topic, right? By reading reports, by going to websites, by following the news, you're all researchers. So it's about figuring out what's the best approach to take as researchers. And then obviously figuring out the methods, tools, techniques, and then figuring out what it is how we're gonna do something. But first, since I just got all of you our researchers today, at the beginning two slides ago I asked you how many of you are researchers in iSoft format? Why would the rest of you raise your hand? Because that's not what she does at work, okay? So when you go to work, those of you, I think the majority of you said that you were from community-based organizations and about half of you consider yourself service providers. So when you apply to that job, when you got the job description, and now you're going in, while you're hired, you're doing your work. When you go in and you see clients, right? Or you develop materials, or you go to a lot of meetings to meet up with other service providers to figure out how to connect better. Or you're developing new programs and trying to find funding. None of these things involve research, right? Just questions, just questions. Does it involve your own beliefs and experiences? Does it involve trying to figure out what more needs to be done? I do understand that for most of us, though, we don't have a luxury like me, actually. I mean, I do get paid to be a researcher, and I am the luckiest person for me to be able to do that. Most of us don't get that kind of necessarily time, physical time, mental time, et cetera, to do this. But so who usually does research? Who's usually classically considered a researcher? Be able at university. And why? Because they have PhDs. Because they have PhDs? Because they have PhDs. I don't like this group. We just get right down to it. How many people agree with that? Most researchers, people who think have a researcher on their card are because they're at universities and usually with PhDs. Well, it would be classically considered researchers. Because they're not the PhDs from Cassie Fullerton or D.C. or Michael Reilly. We're from grad students. Grad students? The students of the PhDs? I mean, now you're getting technical. OK. They're still at universities. They still have some sort of higher degree or higher degree aim. So we're not necessarily talking PhDs, right? People can have all sorts of different kinds of degrees that give them the coursework to conduct research. OK, so if I threw in masters, PhDs, at universities, students and faculty, who do that usually what people think are classically researchers? How many people say yes? Yes. Is anyone saying no? Am I missing anyone? Who else? It's programs. Hands and programs. Good one. It's not because they have the track that they have. They have to actually find funding for these programs and they have to actually develop them for the future. OK. At some point there's going to be a timeline about what you're doing. Good, so hands and programs have the responsibility for developing new efforts. And that often takes the kinds of things we already talked about, right? A lot of experience out in the field, understanding of what the gaps are, looking at the literature, looking at what else has been done, writing the grant proposals, getting the money to actually do it. There are a lot of research skills in them. Good, I love it. And now I saw one other hand. Anyone else? I think I was wrong. I wish it on your grants. OK. A lot of undergrads actually do use it. I don't know how some of you see that. Absolutely. I'm so glad you said that. So it's not necessarily someone with a master's or PhD, but someone who's going for their BA, bachelor's degree, because they've been taking some coursework because they have some capstone projects they need to do. Good. So I'm still hearing universities or select few at services. Yes. Research institutions and government agencies? OK, good. So and why? Why are they generally researchers? Because they're, well, a government agency is depending on the specific agency. They're looking for more information, specific field, and it's children, and it's health, and it's politics. So different specific areas. And is it all government officials and public officials? Certain kinds are involved in research. They usually have higher degrees, right? Generally, it's right. So where does that start to seem to overlap? Maybe one other, below. Well, profits, they all have their research and design department so that they can improve their products and make more money. Absolutely. Do everyone hear that? So for profits because they oftentimes have a research and development section because they're trying to innovate, develop new things. So I would, again, like to assert that, for the time, we are all in this room, researchers. But that's not the normal job we usually play, right? For most of us, to actually take us through an exercise. You guys willing to get up and do a little walking around? OK, first I need four volunteers. People who would volunteer to be consultants. And I'm actually looking at the back of the room for people who actually raised their hands initially and said that they were researchers. Can I pick on you? Yes? Three, two, three, can I have four of you stand up? All four of us. Are there four of you? Three of you, yes, and you? OK, so one, two, three. And who's the fourth? Do I have anyone else? Should I pick on Rupert, who I also saw as a researcher? OK, four, Arda, OK, great. So ladies, so that we know how to call you when we're talking about you after you leave the room. What are your names? I know Arda. Moe. Heather. Lisa from the museum. Lisa. Fabulous. Now we're going to ask you to leave the room. Give us just a few minutes to organize the rest of it and we'll ask you to come back. OK, I'm going to take this off right now. Well, actually, I'll do it one quick thing. We're going to actually now break it into groups, and I'd like to be able to mix it up a little bit. So I'm going to go around the room and just count off one or two, OK? So can I ask Laura to start? You're number one. One, two, one, two. Oh, remember your number. One, two, one, two, one, two, one, two, one, two, one, two, one, two, one, two, one, two, one, two, one, two, one, two, one, two. OK. Can I have all my ones up here and my twos back there? I guess awesome. Define methodology to collect data. This is not a research method. What CBPR is, is an orientation to research. It changes the role of who is the researcher and who is the researched. It is typically thought of in certain kinds of methods, like qualitative, or where qualitative is more likely to occur, but it can be just as easily done in quantitative and evaluative, et cetera. There are fewer quantitative, fewer surveillance kind of epidemiological studies, although I'll tell you I was just part of a CBPR collaborative that looked at looking at cancer, breast cancer, higher incidence of breast cancer, and mapping in California. So it can be done with a group of epidemiologists. And it's an applied method. It's about trying to solve the problems that we see in communities. So this is not, it's less about in the laboratory, or in, so certainly I've never collaborated with a biologist. I don't collaborate generally with experimental psychologists that do things in their laboratories under control situations. More with applied kinds of researchers. And the goal is to influence change in communities, in systems, programs, and policies, the kinds of stakeholders that we've already talked about. There are many definitions of CBPR. And the Kellogg Foundation has kind of summarized it this way. CBPR is a collaborative approach to research that equitably involves all partners in the research process. That means all of you in the room. And recognizes the unique strengths that each partner brings. CBPR begins with a research topic of importance to the community with the aim of combining knowledge and action for social change, to improve community health, and eliminate health disparities. And I'm a health disparities person, so there's a twist there. But really you could do CBPR in all sorts of different kinds, for all sorts of different kinds of issues and problems. I have a good question. Is there something in research? Because sometimes we already want some outcome. So our approach is going to be biased to lead that outcome. How do we educate ourselves to not be biased? Let's talk a little bit about this. If you can just hold that question for just a minute. I think that question of bias is wonderful. I wanted to actually reframe this. This is not about objectivity and subjectivity or validity and biased results. This is about actually coming up with research questions and doing research that is more applicable. Sometimes the best questions start because one person sees. I've seen, for example, I've worked with community-based organizations where their research question is, their topic is, I want to show that my program works. Would you say that's a little biased? Kind of, right? From an objective standpoint, right? Except for isn't that, for many of us, the reason why we're here is when we want to figure out, right? Or not maybe that's not entirely, but what works? Obviously we're open to finding out what doesn't work, but we know something works. People keep coming back to us, right? We see people getting better, but we see, right? Bantley's improving, we see something. So I would love to think not necessarily about bias or objectivity, subjectivity, et cetera, but think more about how to come up with research questions and methods that address real community needs. Sometimes it originates from only one person's perspective. The way to do this is varied. This is just according to Meredith Minkler, Barbara Israel, and other CBPR researchers in public health. But let's go through this and just nod your head if you feel like this is something that communities would be interested in. Number one, it recognizes that communities are the important, what we call unit of identity. It's that research needs to happen in communities with real people. Sound good? Builds on strengths and resources within a community doesn't only see communities as being tangled up, but sees them as having opportunities to engage, right? To talk, to collaborate in problem solving, to identify those opportunities for dancing instead of tangling, et cetera. Number three, facilitates, the CBPR facilitates collaborative, equitable partnerships in all research phases and involves an empowering and power sharing process that attends to social injustice. That means that if I were to collaborate with Amelia on an ADD right study, although I sure I wouldn't because I would be the worst university researcher to collaborate with knowing nothing about that topic, but if I did, it would mean that we both are in control of this study. We both identify the research question, right? Sometimes Amelia would take the lead in identifying who the populations are at risk or what potential needs we should be addressing. Sometimes a university researcher might take the lead and say, you know, that sounds like we need to have a comparison group. You know, that sounds like we need to have these kind of measures, but it's a conversation that we agree on together. Number four, it promotes co-learning and capacity building through that collaborative process. So if I weren't such a dummy and knew actually something about ADD, then it would be about what more do I need to know about the population and communities, right? That my partner is working. And what more would they wanna know about research methods, design, data collection that I have been trained in, right? It's about sharing those things with each other. Five, integrates and achieves a balance between research and action for mutual benefits of all partners. So this isn't just about collecting data, right? Writing a paper. But CBPR is specifically oriented to making change in communities. So if I just collected information and published an article, would I be following CBPR? If I published the article, but I also went and talked to policymakers who then implemented a new, let's see, a new funding to provide to support increased screening for ADD and increased services. Would that be CBPR? There needs to be something left in the community beyond just the knowledge that was generated and just the publications that were done. Number six, emphasizes public health programs of local relevance and also ecological perspectives that recognize and attend to multiple determinants about, whoa, this is a lot of terminology. First, emphasizes local problems I think we've already talked about that, right? We want to know about what we can do together here. Ecological perspectives. So what's ecology? Environment, right. So this is not just about looking at individuals, just the participants in our research, but we want to make sure that, and this naturally happens with CBPR with communities. Communities want to know more than just the 100 people that were part of the study, right? They want to know what the implications are for all their clients. They want to know what the implications are for the development of other programs. People want to know the implications for changing environments and actually creating healthier policies. Generally speaking, the more you can take an ecological view, going from the participant, the research participant, but building out, right, and incorporating those perspectives, the more that you're going to CBPR. Because of number six, number seven happens. It's a systems development through this process of research, of where we're going back, we're teaching each other, we're doing the research we're learning, right? That involves ideally systems. So for example, a lot of research I do relies on community health educators. Turns out that a lot of the organizations I work with have community health educators, right? So this is about giving sustained funding to community health educators so they can help to not only do services, but evaluate programs. They can learn about data collection. They can learn about writing and we absolutely do publish together. We can learn together about how to present. And so systems, have systems been supported in that community-based agency? Yes, hopefully could those health educators then go out and train other health educators and new staff or train volunteers? That is what they do. And oftentimes I go with them to help, right? Increase the circles of people who understand and are involved, so that's a systems development. And then finally, disseminates findings to everyone involved, not just the researchers or just the immediate research team. Sure, please. Number eight, they say finding to all partners. How do you define the partners? Because they shouldn't only discriminate findings to the partner, but also back to the community members, report back to them because for example, you do a community assessment and you'll find what the lead in the community are, but for some reason in that community and those who are not documented officially. So this is the way you inform back because hey, this journey that have been documented and going to be stated that community, for example, I also come and want to know about that community, they have a proof to show them this is the research that has been done and they want to also inform you the fact that this is the lead in the community. So it's not only important to our partners but also to the community members that saw who did what the process. Perfect, bingo, absolutely. And when I talk about partnerships, we're gonna talk about different kinds of structures in partnership. Generally speaking, traditional research, the partners are what they call the investigators, right? So I'm the principal investigator of the study or we are co-principal investigators, the co-investigators together. And so you're right, in classic terms, usually those are the people who will get to know what the results are. They're the ones who are writing the reports, doing the presentations, right? Disseminating to our colleagues. But you're absolutely right, in CBPR, it builds on a partnership that's much broader in terms of people who are not usually considered the researchers and the participants for who we'll talk towards the end. Really, that is their data, right? And so it comes down to the issue of data ownership, and then sharing back and asking permission to continue to build up with that. So thank you. We'll go through at least one scenario later on where we'll talk a little about a problem scenario. How would you address that? Okay, so I just wanna make sure we understand, I think we do, right, that we're not talking about university research driven anymore, right? Where the university research is like the topic and the questions. The decisions are made by the university researcher only. And you know, I'm, as a university researcher, I'm the only expert in this at the table. And the goal is to generate knowledge and production for its own sake, to publish, et cetera. But we're really talking about a participatory research paradigm where communities and university researchers together decide. They share power and decision making equally, not necessarily always 50-50, right? There's sometimes when the community part will be more informed, sometimes when the university research will be more informed, but we do everything together that we are experts in co-learning and the primary goals are not only improved health, but empowerment and capacity building for all involved. Right, so the left-hand side is what we're aiming towards. I do wanna recognize that there's a lot of ways of collaboration happen, not just CVPR. So you can have research that involves community partners in all areas, right? Of the research, as we talked about today. And this is gonna be the examples that I talked about for the last one today. But I do recognize that there is collaborative research that happens that's not CVPR. It doesn't adhere to all eight principles. So for example, you could have a community-based program where there's a community partner and a research, and a university partner. The community sponsor is the research, it's a community sponsor on researcher-defined projects. So the researcher, sorry, defines the project, but involves communities in it to different levels, right? Was the community at the table from the very beginning? Maybe not. Maybe they were only bought in for a subcontract to do the participant recruitment, right? And some of those kinds of things. Could be considered collaboration. Oftentimes, that kind of work is more considered, you know, that the community organization has a very, very defined job. So where the, it's what we call community place where the researcher defines everything and then just picks a community to do it in. Oh, I picked your community. Let's collaborate. And can you please put together a forum so I can come and speak, right? Doesn't feel like CVPR, but it is a certain level of collaboration. All the way down to the real non-collaborative effort. So this would be where, you know, I'm a researcher. I have a question on ADD. I don't even need to go out to communities. I'll just go dig in terms of data that's already been collected. I do like secondary data analysis of something that's already out there. The California Health Interview Survey or something like that, right? Or I'm just gonna go into my laboratory and just set up a few experiments there to figure out the answer to the question, right? So CVPR is not the only way you do collaboration, but I think it's the best. Yes, no? Perhaps you'll address the systematic power that's embedded in this process. So the goal is always to have this kind of, maybe not completely, but this equal relationship but when it is donor-driven or funded or resource-driven, it's kind of hard to establish this type of partnership. And what we saw in the group exercise that, you know, in one group, everyone was looking to the experts and solve the problem. One person mentioned the concept of incentives. Maybe you'll address this, but I feel like there's some structural power issues that always come in my mind as a, hopefully, a CVPR researcher, that I never, I always get stumped. Like, how do I address that? What is it that I need to do as a research? Let's go to it now. Let's absolutely go to it now. So CVPR is a great idea. I fast forwarded a few slides. I'll try and revisit some of them if I like that segue. So where does CVPR go wrong, right? Gage, in talking about relationships, involving research on an everyday conversation. Like, one was the last time you had a conversation at all about research, right? And sitting at breakfast with someone you know, right? And saying, let's do a research project together. Let's figure out some of those power dynamics. Who would have the decision-making? What should each of our roles be? Who would have control over the money? Right, things like that. So the last cocktail party you were at, how many of you I should talk about all those things? Now you know what to socialize on. Never get to the part of creating those trusting relationships that can talk about power, right? Before you begin a research process. Usually the time we start making relationships is, oh, I've got a study. Let me find a partner. Don't you trust me? Sure you trust me, I'm trustworthy, right? Let's do it together and let's just see how far we get. Ooh, we disagree. I never want to work with you again, right? Isn't that the way? So I liken it to this notion of stages. I'm not sure how many of you are in a relationship, but do you ever go into a relationship and say, I'd like to be in a relationship with you. We could do that now, because I've got some money. Hang with me, hang with me. And we're gonna work together. We're gonna at least do this for five years. If I like you, if it works out, maybe we'll do it again. That's not a relationship. That's something else I understand. That's not a relationship. So the whole idea of building CDPR is really based on this trusting and trustworthy relationship. I will just say that most university researchers, and I'm absolutely and in many cases too, are not necessarily trustworthy. Why? Because we never take a class in this. We learn all about statistics. We learn all about sampling. We learn all about theoretical theories and program design. We never actually learn about how you share values to develop relationships. So it really wasn't until I met someone very special, May Mary Ann Boo. She, for those of you who don't know her, she's the executive director of the Orange County Asian Pacific out-of-the-community alliance. It's called ACAPNIA. I've had the pleasure of working with her and she has taught me how to better understand and value a CDPR process. How did that happen? Well, I first met her. So if anyone that she met, Mary Ann, she doesn't come up to you and just say, you're a researcher. I've got some money. We need to work. We're gonna work the next five years. She's not that kind of person. In fact, she's a matchmaker. If anyone's met her, if you're single, she will try and match you. We were both students at UCLA. I bumped into her in the hallway. Didn't know her at all. She didn't know me at all. Took one look at me. I must have looked like I was socially inept because she asked me, hello, what's your name and would you like to be matched with someone? Well, yes, my social life does need some assistance. Who are you? What do you mean? So she is a networker, right? She's the kind of person that just reaches out and wants to get to know people before there's ever really a reason for a relationship, an ongoing relationship to happen. So I met her. So we actually started collaborating on something called the California Pacific Islander, Asian Pacific Islander's faculty education network. It's called Happy 10. This is years ago. I'm sure it predates most of the people in this room. And we worked together on nothing having to do with research. We actually were working together because this network was interested in doing policy advocacy for Asian Pacific Islander issues related to tobacco and smoking and passive smoking. So we both served, volunteered on this. We started to get to know each other for about a minute. You look at things the same way I do. I kind of like the way the things that you brought up. You're kind of like someone who's kind of interesting to me. Let's get to know each other better. Finally decided that, you know what, maybe we should actually work together. She at the time was starting Ocampica. I at the time was finishing my PhD. She said, so would you actually like to come on board and be part of the board of directors of Ocampica? I said, oh my God, you actually trust me to help you run an agency? Wow, okay. If you'll teach me. So I actually joined and through working with her on Ocampica, I feel like that was our engagement. We're trying each other out. We had now a few responsibilities to each other, right? This wasn't just about having fun and leaving. We actually had to get up to the next day and figure out like can we still work together? We actually could. We actually decided we know what. There's some hard things, but this seems like something could last. So we decided to get married and engage in CVPR research. And the early, let's see, in 1991, we started a project called Like Is Precious, a Hmong breast health study because Hmong women in primarily, we were learning about in Hmong Beach. We're dying of breast cancer and never going to get screened. And so we worked in collaboration with, at the time I was at UC Irvine, Mary-Anne Zocapica, researchers from UCLA, Marjorie Cagawa Singer, and three other community-based organizations. Stone Soup and Fresno, Families of Good Health, the Hmong Beach, and the Union of Pan-Asian Communities in San Diego got together and said, you know what, let's actually go through funding. Let's actually try and make this baby work. And after that, what we have now is called Weaving an Islander Network for Cancer or just research and training. This was actually started in 2005. There's a lot of things that happened in between 1991 and 2005. But just an example of a current project we're doing together, where we're also identifying research opportunities, collaborating, data collection, et cetera. So our babies have been conceived, are growing, and it's our research projects. We've been parenting, and I think we're successful parents. We each have our relative spouses, so we actually include them sometimes, but Mary-Anne and I see a lot of each other. We actually ended up moving about 10 years ago. We now live about half a mile away from each other. No, you do not need to live very close to her, so you can be very close to her. We just do. And I make it cycle around, because after you're parent, don't you have to keep the love alive? Right? You're just gonna start dating again, you gotta start figuring out what's important beyond just the research, just beyond the work. And so I put the picture of our two sons. This is Matthew, her son, and Saran, my son. They are really good friends, so we oftentimes get together, Mary-Anne and I just to see our children play. And, yeah, Ruth, is it what's important to us? I would say this is, for me, has been the idea. Through Mary-Anne, I have met some wonderful people, Jane and Charlene, researchers, community advocates, community-based organizations, et cetera, through this. The take-home message is, get, find a Mary-Anne, live very close to her, and get your children to do them. I don't know. The take-home message is what? When should you start? What? Relationships. Relationships. And when should you start the relationships? Build them, yeah. Build up before you ever have to actually get married and have the child, right? Build it while you still can date and still get to know each other. Now, I will say that CPPR is not just all about that good feeling, right? So this is sort of a, I'm painting a pleasant picture and I'm kind of hiding all the things that how you have gone on, all the struggles that we have. And they do happen. But what happens when someone who you really respect and you really admire and you know feels the exact same thing to you, comes up to you and says, or to me and says, you know, Sora, you're actually doing things wrong. We're finding this stuff out. We're a little concerned that Sora, you need to change what you're gonna do. So what's the difference between someone who doesn't know you saying that to you versus someone who you are engaged, married, et cetera, saying that to you? More likely to listen, absolutely. And more likely to say like, oh my gosh, please tell me what I'm doing wrong. The good thing now is, hopefully, that I learn all the time what I'm doing wrong. So I'm not a complete idiot if I get a chance to learn and be better. And the good thing is that it's two ways. And I'll tell you that on the vein of dissemination and making sure to be involved in collaborative, about three years ago, I had a very, very dear community collaborative researcher tell me and she said this at a meeting and she broke down crying. Saying, you know, Sora, I heard that she went and presented our research without asking, without including, and I just can't believe you would do that. And I said, you know, thank you so much for telling me that, right? If we didn't care about each other, you would have never taken the time to share that with me. And if we didn't care about each other, I would not take the time to say, gosh, let's figure out how to make this better. And out of that, we actually came up with a whole of the protocol about how to adhere to CBPR, wrote it down, and now the guidelines for everyone to apply to. So this isn't just about a feeling, right? It certainly starts with the trust, but this is also then taking that feeling and building it into the research plan so that everything is clarified and identified. And so that people can follow it, right? And learn how to do those kinds of steps. So what are some of those ways? Yeah, Lisa. Just a quick question. Do you develop MOUs and memorandums of understanding in your collaborative relationships with community partners? Absolutely. We've done it in the past. Back when we had this conversation, we actually had a policy in place where we revisited it and improved it. And just a few months ago, Wincart, our latest collaborative, just developed an MOU because we realized that the ways that we were communicating and sharing and decision-making weren't as collaborative as it could be. And when we get to that, I will be sharing some examples of that. But the first thing I do want to say that, at minimum, you need some structures in place, right? To be able to say that we are equitable researchers in this effort. So let me just share with you at least what are some of the mechanisms that are currently available. So these are establishing structures. This is before you even start or while you're starting to develop the research proposal or project or whatever that you're working on together. First of all, who are the leads? I just talked about the fact that for most research-funded studies, they have what's called principal investigators or co-investigators. These are the people who are directly responsible for carrying out the key scientific aims and activities of each study. So at the beginning of this morning, we said about who are the typical researchers? The typical researchers who fulfill principal investigators out of PhDs from universities and so on. What of you who don't have PhDs or who are not from universities? How many of you have been a principal investigator on the study? How many of you know that you can be principal investigator on the studies? Okay, is there anything that says in any, and I'm talking to researchers and communities alike, that says that you must have a certain kind of a degree or you must have a certain kind of academic background in order to be a principal or a co-investigator. If you look at National Institutes of Health or CDs or something, they would say we want the lead people to be appropriate, right? So if you're proposing to do a study that involves ADD in the laboratory, you better have someone who's a principal investigator or a co-principal investigator who have that kind of background expertise. But if you're trying to do something that involves evaluating a program in the community, should you have people who are about, who are actually program people in that community who understand how to do that program as some of the lead people responsible? If you don't, you're missing some key experts, right? Sorry, I was just gonna inquire about, there are some PIs that require you to be part of an institution that's academic. So you don't necessarily have to be a PhD but it has to be affiliated with the university, right? So, there are some, are you talking about some funders or there's some institutions that require that? Right, okay. So yes, some institutions like Cal State Fullerton, UC Irvine, in order for you to represent the university, you need to have a certain kind of position. You have to be what's considered to be appropriate to be a principal investigator. So, all researchers at a university are not necessarily eligible to be principal investigator, only certain ones. But that's specific to an agency. Might that be true for some of your agencies too? Right, so if you work in a county or in hospitals or at non-profit groups, that your agency also defines sort of who are the people who are eligible or most appropriate. They're usually people who have higher responsibilities in that institution to begin with, right? So usually volunteers for an organization can't represent that organization as an investigator. But could the executive director, could the program director, could a program coordinator, depending on that agency, right? Yeah. I'm not quite sure if the ILV process also have an impact on who's gonna be P.I. or co-P.I. Okay, so we're gonna talk about institutional review boards in a minute, or in about, I'd say an hour. Hold that thought, because the quick answer is no. It depends on the research study. But let me throw this back to you now though. So, there was two things that we brought up. One is who can represent your institution or your agency. The second is who does the funder want. Sometimes the funder says that you need to have an appropriate level of expertise. So that actually does mean oftentimes that the funder wants to have someone with a PhD, with an approved track record in that research area. Do they have to be the sole principal investigator? And in fact, I'll bring up Mary-Anne Thune-Ocapica. And for years she has been, ever since Jackie Howell has, have we had this path? 1999. 1999, and there've been two iterations with a watch, three, to count the needs assessment. There was like a one-year needs assessment, for a two-year needs assessment, and there was the first five years, and the next five years, and they've been long gated out. Mary-Anne Thune is the principal investigator of that. It's called Promoting Access to Health. It's a center for excellence in eliminating undisparities. It's funded by the CDC. Why is she the most appropriate? It gets down to what the program is about. It's to develop and evaluate community-based interventions to increase breast and cervical cancer screening. So remember, to develop in community settings and evaluate in community settings, efforts to increase breast and cervical cancer. Mary-Anne Thune is the executive director of Ocapica. She's a master's in public health from UCLA, and she's done a lot of communication, evaluation, publication. If you saw her resume, I think you would absolutely agree perfectly appropriate to be the principal investigator. And I have the opportunity to be the co-investigator on that because I bring a certain level of expertise, but my expertise is not able to be responsible for carrying out the entire effort, just for a piece of it, and I'm part of the evaluation team. So here's where I want you to start thinking about for the kinds of questions that you're interested in topics. Who are the kind of people from your institutions that are available, and do they have the kind of experience, expertise, and responsibility to serve in lead positions? If they do, assert that. Most of you are from community-based organizations or service organizations. It turns out that without you, researchers like me couldn't do our research. I'm a big-name scientist. I need communities, people to be part of this. I'm not from the communities that I usually work with, Pacific Islander, for example. I need co-investigators. I know that Kahl is one of our co-investigators. She's a lead personnel on Windcart for us. Now, there are differences between principal investigator and co-investigator that we could talk about those differences, but really it's about the idea of identifying who's the most appropriate. If you're not the most, I mean, if you want to be that fun person, but you're not quite there yet, what do you need in order to be that person? Do you need institutional support, right? To designation to be that person? Do you need more experience in presenting results, right? Maybe you're involved in evaluation, but you need more experience, more publications, more presentations, something to demonstrate that you can be a lead on a research project. So you need more research experience, et cetera. What is it that you need in order to do that? Think about it. In my absence, principal investigators, co-investigators, what I think are some really other important structures are things like executive boards. So it turns out that most collaborative researchers so have not just the lead investigator teams, so the lead researchers, the lead investigators, but people who are gonna be part of the decisions to carry out to meet the aims of each of the research studies. These are executive-level people. These are people who have decision-making powers, and those decisions are essential to carrying out the study. So as part of WINCART, we have six community-based organizations, one representative from each of those sits on one of our executive bodies that's called the Center Steering Committee. And every major decision, if we've got leftover money, how should we be sending it? We take it to the Center Steering Committee. If we're having a problem meeting us an aim of a study, right? We're having glitches in recruitment, or we're having glitches in development of instruments or collection of data, Center Steering Committee. They are helping to make the decisions that run that research project. How many of you have actually sat on any kind of a body like that? Executive boards, great, fabulous, okay. And then finally, maybe you don't want to necessarily feel for the development of a study that sitting at the day-to-day level is not the right role, but you want to be kept abreast of things, right? You want to represent your community to make sure that things are appropriate, are culturally sensitive, right? Are involving people in ethical ways and culturally appropriate ways. Then oftentimes, people think about community advisory boards as a lower level collaborative structure, but where you can get representations of community members and stakeholders, you wouldn't just need people from the collaborative agencies, but you could have people who would represent the participants, right? Me involved. They oversee the partnership, they help to guide it, but their suggestions aren't necessarily mandatory, right? Here's just input to improve, and they can help to ensure that the two-way flow of communication happens between all the research and the community. And on WindCart, we actually have something called community advisory group. They're made up of representatives that aren't directly involved in all the research activities. But they're from the community, so we've got pastors, we've got cancer survivors who are involved, right? They don't want to come to every meeting we have, but we have quarterly meetings where they get to learn about what we've been doing, they get to share their advice on what we can be doing better, and then we can ask them things like how would the community react? We want to share this back. How can we be re-engaging with our survivors or participants? How many of you have been on an advisory board? Community advisory board. Oh, I was hoping much more, okay. So you know then that your input is not binding, that researchers don't have to follow it, but if they're smart, they will, right? Are there other, I'm sensing that they're probably, are there other entities that people have served on before on collaborative structures? Yes. Like action groups or specific parts? Okay. More groups or action groups for specific entities? Okay, and do they form more on the level of guidance, these action groups, or more on the level of decision-making? I think they have more on the latest survey, for example, up to the community, if I do more than it would back up. Great, absolutely, perfect. Anyone else been involved with anything else? Yeah. Collaborative for children's oral health. Okay. What it is, it's different clinics in the community that provide services to children, and we get a lot of input about what needs to be done differently, how community clinics can function more efficiently, how we can decrease the decay level in children under the age of five. Good, have you ever taken on any research kind of efforts before? They have a researcher, and we have a research institution that we go to, and I know we did get the research results from last year, and what we did is we came up with a new set of questions that we want them to be looking at. Oh good, so it sounds kind of like you're here at the level of an advisory board. You kind of are a sounding board for people. It's like offer input, but they don't necessarily have to act on everything that you provide. Well, kind of. Oh, I like that. Because we pay them, and there's certain things that we work for the Children and Families Commission solution that they're looking for that we need to provide them. Excellent, okay, so you really are more at the level of you are in charge, you're doing a subcontract or consulting agreement to someone, they are kind of taking your ideas and actually working on it. Yes. I would say you're probably functioning as sort of the investigators and they're the higher, right? Researchers. Researcher to do it. Love it. Anyone actually played that role before? Well, you're actually, so you've been at more at the institutional level, trying to figure out, and you're trying to define when you get done and then bringing on expertise with you. Okay. So the whole idea, though, that are different roles. When should you negotiate? Who should be an investigator? Or when should you negotiate to have or not have a community advisory board? At the very beginning, right? So you don't wait for, after you've had the child to say, now who was gonna make the decision about whether we're gonna breastfeed or not? Or who was gonna make the decision about whether public school or private school? Right? This happens at engagement and marrying, right? Because really it's at the marriage stage that you're like, okay, you're the principal investigator. I'm the co-investigator. I understand what my role is. I understand what your role is. Now let's go have the baby together, right? Okay. I wonder, okay, we can do this. So now you've developed your relationship. Let's just say you're all in loving relationships now with university community researchers. And now the time's up to actually figure out what you wanna do together, right? Now, I'm just gonna throw out a few things that you might wanna consider. Things like is the issue consistent with the long range goals of the community, right? Do you wanna be working on this issue five years from now, 10 years from now? It will the issue be unifying? Will it make people want to work together? It will be divisive. Like it'll turn people against each other because there's gonna find out that your program works but your program doesn't work, right? Will the issue contribute to community capacity building? Will the process of CBR provide good education experience for everyone involved? Will the community receive credit? What kind of credit? Are you gonna receive credit in name? Are you gonna see credit in terms of resources, et cetera? Will CBR lead to an improved health and social outcome? And is the issue important enough for people to work on? And are they willing to work on it? I wanted to just take this time to go through a little exercise. What I'm gonna do is pass out, let's see. How about groups of six? Ooh, no, we should probably have you guys turn and look at each other, right? So, one, two, three, four, five, six. One, two, three, four, five, six, okay? So kind of turn around and face the group. I'm gonna give each group a scenario. I want you to read through the scenario and to try and figure out what process would you use to answer each of the questions? Okay, so the three questions that you're gonna ask. Now we'll go up from Rick and me. So, the first group. I only have two caucus groups. Your scenario, number one. Are you guys, are you one group? Excellent. I heard two ideas. Survey, generally quantitative, town hall meeting. A lot of good qualitative information. Are those two very valid options to collect information? Yes, and are they using research? Absolutely. Good, what else, what else did you need to share? The other way is to conduct a focus group discussion. Yeah, to get all information. It makes us, you might not be able to approach people door to door. And then the only way to also collect information is to conduct a focus group discussion. Good, so focus groups, even key informants, like you don't necessarily have to have a group of people but you can have key experts or people who have experienced this that you can talk to. Now do you need large numbers to try and figure out how to do this? No. No. Right? I've done research studies where we've interviewed 20 people. 20 people, I got three years of funding to do this. 20 people, it's all around breast cancer and survivorship. So I should do 20 interviews for a really, really long time. But we're not talking big numbers, we're talking about what's the research, what do you want to get it accomplished? Number two, how will you determine what topics promote larger community capacity building? The survey. The survey would tell us what the needs are of the community. So the survey is going to tell you, for example, that a huge need to prevent accidents, to do education around something, to prevent accidents, to need to communicate capacity, if you prevent accidents. It'll lead to reduced accidents, maybe. But how will you know if it increases community capacity? I did decide what the resources available in the community and build on that resources and have the community members actively involved and youth writers existing and that as a partner, we see the gap in the community, we together, I put all the resources to meet together. Wow, I should have written that down, that was brilliant. But especially what you're saying is, not only is the research going to identify the need, I mean, the research part is going to identify the need, like injury prevention. But if everything else you know that's going to try and figure out what to do with that information, right? So before we even collect the needs assessment, shouldn't you have a good idea who might even use this information? Let me put it a different way. If there was no community agencies that were interested in accidents and injuries, should you ask it on your needs assessment? Not necessarily, right? Because how does that link to anything that the community can actually work on? On the other hand, if you know that your community, agency, and population is very interested in breast cancer, right? No, maybe the researcher's not that interested in breast cancer. Would you want to make sure that breast cancer is on your needs assessment? Absolutely. Right, so it's not just about what the science says you need to look at, but it's who's going to use the information. I think exactly what she said. Perfect. Okay, what should the roles of the community versus the university researchers be in the selection of the topics? Let's say I'm the researcher and I want to do tobacco. And let's say no one's interested in tobacco. Well, good morning. It's the 13th of March. I think I should go on a date. Good morning. In the community room this morning we have a partnership with UC. Hi. The African Challenge program. Change happening. Change those ranks. About it. I see that. I see that. I see that. Yeah, it's okay. Thank you. I forgot the name of the university. You should look at it. Okay, you should look at it. Amazing. You're gonna see that. I see that. I see that. I see that. I see that. I see that. I see that. I'm gonna show you how. I see that. I see that. Okay. So, number three, what should the goals of the community university researchers be in the selection of the topic? Should it just be the researchers selecting it? Whatever the researcher says, you know what, that's not, Ernest, that's a great idea, but that's not my area of expertise. That's collaborative opportunities for new researchers. Yeah, I love that script. Number two, testing new interventions. Who are my number two groups? Number two, and number two, and number two. Okay. So, you've been asked to join a research collaborative that is writing a graph proposal, the development task, the effectiveness of a new program. Oh, I picked the topic, childhood obesity. The research is being led by a group of university researchers, and the goal of the first meeting is to identify the strategies to include in the program. Number one, how will you determine what populations to target in the proposal? Look at the data of sections or target the schools that have an obesity problem. Look at the data that exists in the school districts. Good. So, you're going to look at the data, and let's see that the data says that you should be targeting some other groups that you don't serve. The partnerships that we have to engage that community and we have that partnership with them. So, maybe they'll be more willing to participate with yourself. So, even if my population isn't necessarily the highest level of obesity but still a need, should we be including my populations? Is it an important role of community to assert that and to change that? Absolutely. Number two, who should identify the strategies that should be included in the program? Everyone. In particular, the communities, people who are actually serving and providing the services, right? And three, how will you determine if the resulting research study is of enough interest to you to be part of? Remember, because this is your writing a graph proposal. What things are you going to look for to decide if you want to be part of this or not? Good. Is that interest? Yes? It's going to take in terms of your reporting back to the agency. Are you going to be able to commit to what the graph proposal is requesting? So, what is it going to take from your agency to actually be part of this? Does it move your mission forward? Love it. Does it actually move your mission forward? We have so much need, we could be spending our entire lives, we are spending our entire lives addressing all the needs, right? But what are the things that you feel is going to best reflect what you're there to do? Great. And there's a big fourth one. Is it about money? What kind of resources? Do you have the resources? And if you're writing a graph proposal, what kind of resources should you be looking for? Or, let's say, staff. Staff. Okay. So, a general rule in CDPR is that the money should follow the actual leadership and emphasis about what that research is going to be. The universities are very costly. But are we worth our money? I'm so sorry. Sometimes. It turns out more likely communities, your staff, the staff thing, is less money. So that the automatic assumption is you need less support. But that's not always true because it's not just staffing that you need, right? Sometimes it's infrastructure to your agency, right? Do you need to report to your board of directors, to your other staff members, to your clients? Sometimes it's a lot of travel. I have staff members who say, I can get to the person for travel. I'm like, yes. You're doing something outside of the services of your agency, right? So where is the money? And are you getting the money that you need to do this? Okay. And then quickly, number three, evaluating existing programs. You're very interested in determining whether existing programs work in your community work. You set up a meeting, invite other staff from your agency, staff from other organizations, and some researchers. Thank you. The goal of this meeting is to define the main topic of the evaluation study and figure out whether there's any funding to support it. So number one, again, who should define a program should be evaluated? This is all community, right? How can staff members from different agencies collaborate with such an evaluation? MOUs? Oh, please say your thing. Are you thinking about anyone being investigated in this? First of all, this is scenario number three. Anyone? Yeah. Okay. So, sorry, who should define what programs to be evaluated, and then how staff from different groups can collaborate? So this isn't just about, see, as service providers and as collaborators, we all say like, sure, I'll help you. We never have a conversation. Well, what's the role? What's my role? Oh, you want to reach out to the communities I serve? Someone from my institution needs to be an investigator, right? Because that means responsibility for carrying out significant parts of the study. I'm hoping you would say something like that. And you're saying, sure. Remember with me, what's the role of the agency staffer as a university researcher? So in this case, does the university researcher need to be anywhere among an investigator? Maybe. Sure. Maybe co-investigator. Maybe have a research advisory committee. Right? Have a group of researchers be involved to advise you on how to be evaluated. Slip it. Right? That's what I serve on with Mary-Anne Fulham on her path project. Okay. We talked a little bit about how to start identifying questions, right? Who should be at the table? What should we be talking about? Whose perspective should inform developing questions? And I get questions all the time. What makes a good research question? I don't think I've ever heard about research questions. Does my program work? It's a great evaluation question. Right? So I've never heard of a bad question. It's really about as a team trying to figure out how the question matches the design and method. So what we're going to talk a little bit now is there are different ways to go about doing research. And I'll apologize I had a time with people who are researchers. It's going to be a way simplistic approach. And I'll also apologize to those of you in the community who want to know a lot more about this, because unfortunately we don't have the time today to talk about it. But I always like to at least point out that there are two different ways to do research. One is what we call inductive. It's more about we're not sure why something is going on in the community. We need to understand before we even pose a hypothesis like, or pose a research question like does my program work, or program A works better than program B, which is a hypothesis. Hypothesis I'm not. I need to figure out what's going on. This is the kind of work I love to do. For example, with that study I did with 20 breast cancer survivors, we just want to know. Bless you. What were the needs? What were their experiences? These were Samoan, so Pacific Islander breast cancer survivors. We had no idea of what their needs were. We had some influence because there wasn't support group. But we didn't know as the experience needs, who were they going to support, if they were getting support. Or the experiences of the people who were supporting them. What did they get met in the community or at the hospital? What did they not get met? This is very inductive. We need to be thinking about why this even exists before we even identify a hypothesis. We consider this an enic view in anthropology. Trying to get an insider view on why these issues are challenges or a crime. We want it to be about figuring out how people, what is occurring in a new lived reality. In a natural environment. No comparisons. No laboratory. Just going out there and trying to understand all the different factors. It's usually more linked to qualitative methods, although you can do inductive research with quantitative as well. You can do a lot of it with quantitative. You usually lend yourself to qualitative. To understand the why is it happening, the context in which it's happening. And then to understand what might be able to address it. So qualitative methodology like focus groups, like town hall meetings, getting people together and sharing opinions. Key informant interviews going to quote experts, whoever those experts are in the community, to find out what they think is going on. All those different kinds of ways to get that. This is as opposed to what we usually think, oftentimes in research, is deductive. It means that we know why a problem exists and we want to actually do something about it and generate a hypothesis. I think my program will do a better job at improving whatever it is that we want to do. I want to know whether it does. Then I want to take an outsider view. Here's my program. I want to take a few steps back and take an Eden, what they call an Eden perspective, in anthropology. Or as from a few steps away, what's going on with that program? How is it impacting the people who are involved? How does it compare to other programs in terms of the relative effectiveness? Instead of taking an iterative approach, where you go into the community and then understand what's happening and constantly identify issues and then question whether I'm getting the full picture, you want to take a few steps that can take a linear approach. First, you define the program. Then you define the comparison. Then you define the measure. It's a much more linear approach to research and it's much more conducive to quantitative although and anthropologists will argue you can do a lot of hypothesis testing. Anthropologists, sociologists, psychologists qualitatively. But it's more likely to be quantitative to look at what's going on, measuring what's going on, measuring how much change is happening and those measurements usually happen through quantitative measures like surveys. In fact, everyone always thinks about surveys the first time. What other ways can you quantify things? Count things like behavioral health and hospitalizations. You can go to data that's already collected either by surveys or by observations like disease cases and count how many people don't have health insurance or how many people who have health insurance have a positive outcome, right? Quantitative. It doesn't necessarily mean that you're collecting data often scratched. In fact, survey data clutching is often times one of the hardest data clutching to do because of all the labor that goes into search. Okay, so we just talked about this. It usually involves measurements of some kind. Instruments like questionnaires or surveys or observations, right? Could I, for example, if I had a standardized tool and I wanted to know what the effectiveness of this workshop was, find out how to check the number of people, how many people are students? How many people are not in their hands? How many people are interacted? Do I quantify that? Why a range of methods, right? Have I talked about qualitative? I could observe people in the natural setting, in-depth interviews, focus groups, case studies. I could do surveys, but they're more like the open-ended surveys. But why did you, what did you feel when you were diagnosed with breast cancer? What did you do next, right? Open-ended where they can explain. Okay. I do want to see that side by side they differ. I'm not going to go over this in detail, but as to what they're able to address and how they're able to address different kinds of research. So certain of them are qualitative, much better to identify phenomena going on in a community. But both qualitative and quantitative can describe what's going on in a population. Both of them can explain or can associate things together. Quantitative is usually what you're going to use to predict something. So if I do program A, then participant will, this will happen. That's usually more linear, usually more quantitative. And both of them can be used equally well for a program evaluation, depending again on what you want to get out of it. So hopefully, in the future, you'll never ask the question like, well, what kind of survey are we going to do? What kind of, it's not, it shouldn't be about the method. It's always about what you want to answer and what's the best way to do that. Getting into people's lives, or taking a step back and trying to see, observe, a little bit more from outside. That's the way that is generally what I want to talk about though is more likely than not, in CBPR we use a combination of methods. Because it turns out that when you're working with people in communities, there is the lived experience that's important to capture. As much as there is something about programmatically or impacts that you do want to understand, you want to know if you're making it a good try. I'm going to show you this messy texture now. And it just means that you can do mixed methods a combination of qualitative quantitative in all sorts of different ways. There's no right or wrong. And if a researcher said, you have to do it this way, well, then they're wrong. For instance, you're really looking and you're trying to really understand something going on in a community or something going on with a program, you're not quite sure what's going on yet. It's what they call formative step. You might want to first have a town hall meeting and say, what do people think about this program? Who's interacting? Find a few people who've been part of the program, interview them. What has been your experiences? Qualitative. Based on the feedback that you get from all those different kinds of qualitative methods, design a survey that you can then administer to all the participants in a program, to then figure out what's going on with that program. So qualitative can come first, then quantitative, then the results. But sometimes you get results. You have no like, I know that my service is preventing or is reducing mortality. My breast cancer program is reducing mortality. Why? Because we have quantitative data that shows that people are living. We need to figure out why that's working. Well, then we'll want to go out and do interviews or qualitative assessments with people to figure out, well, what is it about this program and what we're doing well? Why did it work so well? And it can help you to explain the results. And a lot of times people call this the validity step. The external validity step. You know that your results worked in a controlled population, but now you want to figure out how it's working out there in the community. You can do a nested. So you can start with qualitative, go to quantitative, get results. You can then go, okay, this is not a time to cycle all the way back. And it really depends. And qualitative and quantitative, et cetera. It really depends on what you're trying to figure out at which time. Or you can do parallel. You know, I'm more of a quantitative researcher. You're more of a quantitative researcher. We both want to figure out if this program's working. Let's do it separately and figure out are our findings in agreement. You could do it at the same time, parallel. I could collect which sources of data in either way. So there is no one way is better than another. It all depends on what kind of thing you're trying to answer at the end. That makes sense? Let me give you an example. An example I want to give you is something called Photo Voice that involves GIS mapping. So very unsurveyed life. And the goal of this project was, I'm sorry, the goal of this project was to actually capture the experiences of youth living in Long Beach. And what they felt about smoking we want to know. What do you think influences your smoking? So it's exploratory. Capture what youth what youth in Long Beach felt was influencing their smoking. We knew what Surveys was telling us. Surveys tell us that essentially it's the peers, it's the friends. So if your friends smoke, you smoke. Hopefully it's not much in terms of going out and doing a lot about it. There were already a lot of education going on to educate teams about smoking in this area. We wanted to know more. So we did something called Photo Voice. And Photo Voice is where you involve people to record and reflect their community strengths and concerns for taking photographs. Very qualitative. Once they collect the photographs, they take the photographs, they dialogue with each other about what's the meaning of those photographs, right? What are the issues that they're seeing? Once we do that, we want to make sure that those photographs are then used to educate other people about what's found. We did this in Long Beach and this is the quantitative. We actually had people go and take pictures of various things. We recruited about 20 youths. They went, we trained them on music cameras. They went out to their communities and we just said take pictures of anything you believe influence the smoking among you from this community. And this is what they, and then we quantified the findings. We found out that most of them felt like advertisements targeting teens. There were a lot of pictures of advertisements. I'm targeting teens particularly. And certainly advertising targeting the community in general. But they also felt that just the appearance of the community and the safety, the trash, the community also affects. And they felt business making money off of the community is affecting youth. Violence and poverty. If I just showed you this would you get one of that? This is a quantitative data. I've got a sample size of 37. This is good stuff. I can just suppose analysis with this. Now what you really want to see are things like this, right? So here's a picture and you can't tell but it's a targeting youth because it's the musical group, The Roots. And it's actually on the door of a convenience store. It has The Roots promoting cool. And so why it's important the youth said in Long Beach that they add for cool cigarettes and a singing group called The Roots and The Roots basically supporting smoking. The cool spokespeople, I took the picture because cigarette brands are using famous people to influence their audience. This photo concerns me because if more famous people are becoming sports persons then they will get the attention of younger audiences like teenagers. Because Lord knows I didn't know who The Roots were but everything one of the teens did. Concer, I level the minute you walk into a convenience store that's what they see. What about this? We saw a lot of pictures of things like this. This is also Long Beach. Driving by the ditch, people can see all the graffiti and the litter. Graffiti is in a neighborhood and it's gang related. All the litter and graffiti makes Long Beach look bad. We should make a place they can tag and start a gang prevention program. We should pick up trash and paint out the graffiti. They felt that because kids every day saw this, no wonder that they won. They don't care about themselves because no one cares about the community. They don't care about whether they smoke. And then this is poverty. This is actually up in Richmond. The first thing I noticed with this man was smoking a cigarette. This homeless man actually asked the kids who were taking the pictures for a cigarette. But what's really happening is he has nothing to do with smoke. He's asked us for money for a cigarette. This relates to my lack because we have to struggle to get things. This exists because our community has so much poverty. They felt that the poverty was what influenced people's money. If you took a step back, would you say yeah, poverty, trash, community, pride, etc. Could those things impact people? Absolutely. Then what we did was we actually asked this youth to show us where all these locations were. This is Long Beach and this is the 710 Freeway and this is the Pacific Coast Highway. Thank you. Every red dot is a location of something they found influenced them to smoke. Locations of mini markets, locations of ditches, locations of etc. Free green dot was location of something that actually would prevent them from smoking. Community centers, community service organizations, hospitals, etc. What we found is in a very concentrated area, they went to, yeah, without this kind of geographic area, really centering around some of the major thoroughfares is where if we wanted to do anything we should concentrate our efforts to change how the community looked and what they did. I think in Northern California, oopsie, there we took the break. What did we do with that? What would you do with this? If you got the information, this was more we wanted to know about what was going on. We found out what effects youth besides their peers and we found out where all these things were located. What do you think we could do with this? We go through those areas and we see how we can improve the critical litter and the feeding and how we can put poverty and certainly the first thing you can do is with the advertisers and what goes to change. So what the youth actually said is that they could look at all these things if they really wanted to do something for all the vendors that were located in this area and actually the first thing they decided to do was to do a vendor to support a new vendor licensing law. So it turned out that they had no way to force vendors, people who sell cigarettes, because they didn't have a law in place for that city. There were things that were for the larger community, or that city that said that they shouldn't be selling to minors, that they should have locations, etc. And in order to influence vendors, they wanted to make sure that the city council, the local city council, was on board and wanted to make these changes and move vendors themselves. So what they did was they actually took these pictures and they had dozens of these pictures. They put them all on a big board and took them to the local city council meeting and actually said these things are happening and are effective because these are all ads and instead of locations. We want to do something about it, please pass. Now it wasn't just them but they did help to pass a vendor licensing law in specifically for Long Beach. And now they're going through enforcement, they're doing a lot of training around music flow to voice now to the next step with use, etc. This was a funded research study three years from the California Tobacco Research TRDRD Tobacco Related Disease Research Program. Through your funding, I was a co-investigator with the executive director from a non-profit organization. We actually had three other non-profit organizations involved all across California and in Washington state of Washington. So it had never been done before for me it's very meaningful because obviously they get to use this information. Okay knowing that we have only let me just check my notes because I want to make sure we have enough time to do some things. I think we can probably go through, I'm going to kind of breeze through this next example of wind part because I think it elevates some of the concerns that we talked about today. I think I'll do it in like literally around the world in wind part in five minutes. Are you ready? Okay. So I talked to you already that I have a project called wind part it's a weaving and islander network for cancer awareness research and training that OCAPIC has involved there's five other non-profit organizations with Pacific Island Health Partnership that's one of our collaborators as well. We've done this of trying to reduce cancer disparities among Pacific Islanders through increasing education, increasing research and increasing training of the next generation of researchers. We've gotten funding for a large amount of time we're very very lucky. Everyone always asks where are the Pacific Islands? The people that we work with in Southern California of which there are 100,000 Pacific Islanders of the California come from all across the Pacific including Guam, the Northern Mariana and islands and the Marshall Islands Hawaii, since what happened when I tried to go too fast and slow down Tonga and Samoa not American Samoa, not Western Samoa and I said there were 100,000 this is in California though this slide just shows you that for every single indicator of need there are 100,000 higher levels of people without high school education compared to white non-Hispanic whites greater percentages of people and 100% poverty line or less compared to non-Hispanic whites etc. And we've been in this business for many years now so we've actually worked with more than just six new base conversations here's a list of all the groups and researchers for more than just my own institution so we're really, really lucky to be able to work with some amazing partners and we collaborate on CBPR all time. So I just want to remind you here are the steps, let's see how they work first identifying the research topic so it turned out that three years ago Wincart partners, all the partners decided that we wanted to do a Wincart-wide communication effort on something to reduce council disparity huge, right? what should we do? Wincart already had in place scientific advisory board, a community advisory board and for everything that we do we always develop a working group made up of both so we already knew we were going to go through this structure right, so this is not about initiating the relationship this is about making the marriage work okay, so I bet most of you would say the first thing we should do is look at the data, right? Among Pacific Islanders in California the top five cancers for men California versus Los Angeles prostate then lung, colorectal, stomach for leukemia for California but for Los Angeles is bladder cancer for females, Pacific Island females shouldn't be surprising, breasts, number one uterus or lung depending on which area, lung or cervix colorectal, cervix or stomach this is numbered one through five pretty much any cancer you want any of the major cancers are cancers of need in Pacific Islanders does that help you? you've narrowed it down to these top ten cancers then, right? oh, we're still a lot well, we should go to the community right, and ask what cancers do you see of need? and what cancers do you think the community wants to target? so the community leaders told us, you know what, we want to identify cancers that affect both men and women okay, that should rule out breast and prostate then because this only affects men and this only affects women and we wanted to do one large campaign breast doesn't only affect women that's true, thank you very much Chris, very much so ten, five hundred percent of the cases does affect men but not a major one so any campaign targeting breasts would primarily be reaching women rather than reaching people relatively more equally and they said they want a strong prevention focus a cancer that we can actually try and prevent because we want to get early in the disease, we don't want to, I mean the issue, we don't want to wait until people are nine which tends to eliminate prostate, we don't really know a good way to prevent it breast, we do know some back then it was a lot less long, we actually do know a lot about breast through smoking cervical, we actually do know a lot through path tests but it only affects women, so narrow back to lung stomach that's more about the virus colorectal, we do know a lot, it's a lot of colorectal affect both men and women right, and preventions from prevention purposes, we went back to our scientific advisory board, they said don't touch those issues with a tense at pull tobacco, very very hard to address, colorectal you can try to prevent it but if you actually want to find people who need diagnosis, very very very hard to diagnose, you're either taking people to get a colonoscopy or a sigmoidoscopy which is invasive and expensive or a fecal occult blood test which is highly problematic high positive, we went back to our community and they said, we said you know what the scientists don't want us to touch any of those issues because it's too difficult and our community said she probably told the story much better but the community basically told us that's the reason why we want to address them if we don't bingo, that's what we decided so we set the research question can an educational program increase in this case we said colorectal cancer screening among specific under adults but we do have messages around prevention when we start to talk about what we really want to do let's first get people to screenings there is a prevention focus of screening because if you get some colorectal and colorectal family can be removed before they ever be diagnosed ok, so we've gone through step 2 perfect, step 3 the research team we got representatives from our community partners our scientific advisors and and that should say wind art staff group with their role being to develop this campaign and keep everyone involved in the wind art network a prize of what's going on we developed a bookmark and a video I won't show it to you but you can actually see it on youtube actually this is a brief is this a brief one you know what I don't want to pull it up but I just want to tell you a quick story we had some money set aside for the materials but the community told us they said you know actually the best way to pass knowledge on between community members is by talking story by telling our stories particularly from the people who would be most meaningful in this case our cancer survivors right we at the time didn't know a lot of cancer survivors you know we need some but not a lot but we said ok if we could find survivors we'd love to do a video but how do you come up with the anyone know how much videos cost to develop a lot ten, fifteen, twenty thousand dollars to do a good video and we said we have can we even find a director or producer or editor who would be willing to do this for a zero if it was just a university no one would do this we went through our networks we actually found someone worked for Royce Multimedia who twice a year take on pro bono video projects they did it because they believed in the community and our cause primarily because one of their staff members is Tongin so she made the case so we would have never gotten this all about leveraging resources right that we would have never gotten we developed this we said great, a few our work is done right did we answer our question no we didn't well I should back up and say we went through the usual processes to actually develop the materials we wanted to make sure that they were developed appropriately and culturally tailored that the reading level for everything was appropriate that we did in language focus groups to make sure that everything we developed including the content the picture, the color the language, everything is understandable and appropriate those are just the things that we need to go through and then we decided we set up the study we said we're going to work to lay leaders because this has got to be community sustainability and capacity building we would develop pre and post workshop surveys to assess changes in knowledge attitudes and behaviors and because we wanted to test if ours was worked we wanted to compare it to something else well it turned out and I didn't tell you this but could you guess was there anything about going on in the community before this on follow up with cancer education so were we as a CBPR going to go out and do education and compare it to people who never got educated why would that be a problem because normally if you want to compare if you're at work you want to compare it to a group that's not getting what you're doing right in clinical research that's called usual care right or the control group the control group gets what's out there you don't deny anything to them you just don't give them the better things that you've got in the case where nothing exists what's the usual care can we as CBPR researchers give our communities who participate in this nothing we're going to ask for a survey from them we're going to ask them to tell us stuff about are we going to give them nothing we have to give them something so we actually created another brochure and we based it off of the cancer information services what you need to know series about colorectal cancer this is available on the web download it for free we did translate it put the specific on your languages but now what we're going to do is we're going to compare what we created the book chart to something that is available off of the web we did translate it though so now it's more available but this is stuff that should be available to communities we're not going to leave them with nothing okay so I'm going to leave you in suspense about what we found doesn't that mean a thing I will flash out that we did collect pre-host tests to track changes between them and we did find increases in our group we found increases in the comparison group as well right because we're educating everyone if you're there so if you were a part of this who would you hope you found the bigger increases among the tailor increase right the group that got our video everything and we did find higher increases in that but I won't bore you with all that data the big thing is we found the increases now what are we going to do with it so we decided that you know what since we know this work we want to actually develop materials to disseminate to others and it's available now on our website we created a toolkit and you can actually go to our website this windcart.fullerton.edu not only get the toolkit this is all the PDF form you can get all our materials they've all been translated you can get the bookmark you can get our pre and post tests our consent forms because yes we had to go through consent and we're going to talk about consent in just a minute and our evaluation all our evaluation forms are all available and if you want to just look at it to see how you can do something like this I invite you to go there oh so right windcart.fullerton.edu okay so I'm going to skip this because we already took our break and fast forward because that example we're going to raise some issues around ethics right what is ethical to give to communities but what is ethical to deny to communities in the sake of research I'm going to show you I think this already I'm going to show you is a video about it's called Blood Journey for those of you who might have heard the Havasupai Indians in Arizona participated in a research study about diabetes little do they know that their information is used for other things this gives you a little little bit of an example of what they know or what they experience I was 19 years old when they took my blood blood has deep spiritual meaning to the Havasupai many people obtained degrees and what did we get nothing Carletta Toulousey was one of the very few members who tried to return to college in 2003 while a student attending a dissertation reading she was shot to discover that her tribal blood samples had been the basis for studies beyond diabetes research all sorts of studies that were harmful to our reputation researchers had looked at their blood for possible genetic markers for schizophrenia and in study patterns of inbreeding an anthropological study traced the tribes ancestral migration from Asia which contradicted their religious beliefs that they'd originated in the canyon blood vials sat in this research during a seven year naval battle with the university until Tuesday when the Arizona State Budget Committee approved a cash payment to the tribe in the return of any remaining blood we could do some kind of a big ceremony they deserve their blood back and they deserve closure my heart cries because I know they're out there and I know they want to come my relatives, my friends it is an acknowledgement that could have broad implications for genetic researchers my main worry is that the research data will be used in ways that directly hurt the research subjects but it will be used in ways that they don't agree with Hank Realy is the director of the Center for Law and Biosciences at Stanford University but it's not just the house supine it's a situation with thousands hundreds of thousands maybe millions of us across the country I make baskets I climb the rocks I go down by the river and collect my sticks this is too fresh it's not the right time yet yes, I have diabetes I have diabetes my mom had diabetes my dad had diabetes my grandpa, my grandma and my dad's side my great grandma, my grandma and my mom's side I wanted that cure I wanted them, where am I so long while it is clear that some tribe members signed a consent form for a study of quote behavioral and medical disorders they say they never understood that their blood would be used to study anything with diabetes I understand the scientist's perspective on that so I share it to some extent people are desperate to get more data to get more samples I think if we want people to give their samples to be used for a very wide range of projects we should tell them upfront but we shouldn't say we're going to do and study this disease paren and other things close paren and then use it for all the other things we fought for many years to bring the samples back back to the spillage back to the families back to the deceased because that's the way of our ancestry that we honor and respect and no matter what if it's not their blood it's their blood first of all is always our need to ensure that anyone involved in our research does not get hurt technically speaking was anyone person hurt by this research that was done technically we're talking down to the minuscule like fine lines they're technically no it turns out that there are some assurances about the conduct of human research that all research has to go through is called an institutionary reward that's how you talked about this before and that IRB is in place in order to you know review the scientific design and it approves it and we want to make sure it promotes informed and voluntary participation by and I hate this word subjects challenging that mind but about anyone involved in research in particular so that we make sure we are not harming people until the best of our abilities we might be even promoting benefits maybe to the people who are involved but definitely to right the larger community did uh would you imagine that the study on IRB received IRB approval for the Odyssey 5 I guess and they showed a few signatures they said that probably the people participated do you think that the other researchers that were studying with schizophrenia and migration patterns also got IRB so here's where the lines turn gray right because they didn't have to go back to the people to get any information they didn't necessarily have to get consent from the people to use their blood or something else now the laws are starting to change around this the guidelines are starting to change but back then and still today if you're doing what they call a secondary data analysis remember I showed you this on the levels of collaboration if you're doing a secondary data analysis you may never involve communities at all in collaboration but is that right should they have well it turns out for a group like any of your organizations to also be involved in research you should have in place something called a federal law insurance or a FOA this is basically saying that your organization is engaged in some sort of research with humans and that it's conducting in support by an agency such as like the United States Department of Health and Human Services and that you have in place in place assurances of compliance with the protection of human subjects meaning you will do no harm to people I'm going to guess that maybe there wasn't an FWA in place here too that maybe because usually with Indian tribes I don't know the case about this one but usually they have in place the tribal councils have the approval and authorization to approve the conduct of research that probably implies they have a federal law insurance as well and each institution or organizations but a law insurance is identified with a specific number that's assigned to it by the federal government upon approval and in order to have an FWA all you need to do is specify someone in your organization who's responsible for the research that they know the research is happening that they'll be conducted in responsible ways and that it's going through some sort of an IRB an institutionary review board is there some sort of an extension? no the FWA is an institution basically an assurance that your institution can be involved in research every university has a FWA we have a federal law insurance we have to and we have an institutional review board I'm guessing just guessing though that the Havasipa tribe probably had a federal law insurance in place as well and obviously they probably went through the institutional review board for the university maybe the tribe had it as well did that prevent the essentially what's happened later on that the blood does that help control what happens to the blood after the research is conducted? because that would all have only been for the diabetes studies and the secondary studies they think they have this umbrella bingo so basically everything in place the FWA doesn't assure that anything is given back to the communities even though your institution would have to have a FWA or to be involved in research right? it doesn't mean that you know what researchers are going to be doing with that information so let me just fast forward to the last thought I wanted to share with you that on top of anything that the federal government and research institutions have in place to protect human participants in research there's a whole whole issue that still needs to be resolved that communities are usually very interested in so in my experience they include well cultural do the researchers even understand what it means to believe that your blood is part of your body and not treat it as data but to treat it as human that takes a lot of cultural ethics do the researchers and university researchers in this case have training on what those cultural beliefs are what those practices are do they even ask the questions should they have do they need to I feel for the researchers because they probably felt like they were doing their job because they went to the IRB in a W way but it wasn't enough secondly this notion of ownership who owns the data the blood the information once it's collected does the IRB say anything around data ownership has anyone ever been through an IRB process before doesn't I just have a question because I know my professors mentioned like the data ownership is when they do it for a private you know private sector like after they've done their work they don't own ownership or the company owns it and they can do whatever they want and they can exclude whatever they want so I guess bingo so what Maria is basically saying is that in your experience you've heard that once a data is collected the institution that has it owns it has possession as 99% of the law right who usually has data and is usually processing that data University and generally in contracts if you ever look at the specifics of your subcontract if you get a contract with the University to be part of it it usually specifies in there who owns the data this is not a human subjects issue this is not a research issue this is an issue of an institution's policy about who owns this information and if you're going to have access to it it needs to be a conversation right before you sign on the dotted line between your organizations yes that goes beyond these individual protections in their IRB in the UCI we're asked when we do our IRB we're asked to talk a little bit about what happens to the data when we're finished but it doesn't go to this level of attention I know a great example it's called a community IRB so special services for groups in Los Angeles has a community IRB anyone can develop an IRB as long as you follow federal regulations it was actually developed by Jackie Tran on Redo Capica so I defer to her as to the steps you go through in order to develop it but the community IRB has community representations we ask questions like what's going to happen to the community, the participants after the information is collected will they find out about the information afterwards what will happen to the information the data that's collected will it be shared back with a larger community in benefit is this a simulation for the IRB that's why a lot of IRBs exist that don't ever ask these questions can a community IRB ask these questions? yes because communities have these mission goals and values absolutely so I would Jackie and this all of this goes into the basic issue of community benefit who's holding researchers and the entire research team accountable to actually providing lasting benefits I'm going to argue to you today and unless you're at that table and by you I mean also the researchers in this room because you are a special kind of researcher to sit through this so that you have these values you want to be in these relationships I'm assuming so is everyone around the table discussing these things upfront and is everyone around the table keeping each other accountable throughout and only if you have that only in my belief if you have true CBPR can you address all these kinds of issues for which there are no wrongs I mean no laws or regulations in place to guide you are your best friend I know I skipped a lot of different things I think I'm hoping you'll see that there are a lot of benefits to CBPR that is very well suited to the relationships you work with that you can build trust and confidence between researchers and communities it will improve the use the content of the study I believe and the use and it does address ethical considerations beyond what's available in IRBs and laws and universities