2010 Research Conference

Conference Program

TRANSCRIPT: Evening Keynote by Loretta Jones, CSU Northern Regional Community-Based Research Conference, March 5, 2010

Ms. Loretta Jones speaking at the CSU's Southern Regional CBR conference at Cal State LA on March 12

(3:38 min)

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Loretta: “Oh goody, well I came back and I spent the whole day with you. And I went to some of the workshops, and I was excited. I said, ‘Oh my goodness, people are really doing the work’. However, I did some reflection and I wanted to ask a couple of questions because I think this is going to be important for you. Who are you doing this for? Who are you doing this to? Or who are you doing this with? Have you asked yourself that question? Are you doing it for somebody? Meaning you know everything and you’ve got it all together and you’re gonna take it out there? Are you gonna do it to them? ‘I know what’s best for you, let me do it for you, let me do it to you.’ Or are you gonna ask the major questions? What can we do together? How do we do it together? How do we plan together? How do we work together? How do we step out of our normal comfortable spaces at the university and in the community and take risks?  I go to a lot of universities and when I’m there, I always observe what goes on. And it’s very interesting that if you’re with community people and you’ve been in community a little bit of time, and then you go to the university and you walk down the hallways and people walk past each other. They walk past each other. They really walk past each other. But if they had come to a community-based agency, and they walked past somebody, they would be in serious trouble. Does anybody know why? In communities, you speak. You learn to nod your head and recognize everyone. And in a university, you could have offices beside each other and never speak to each other. I find that amazing. Particularly people who say they wanna do community-partnered participatory research. I’m sitting here because of the giants I’ve worked with. Some of the giants are Barbara Israel. Nina Wallistein. Miriam Minkler, who’s up here in this part of the country. Larry Green. Sarena Seifer. I’ve worked with giants so when we started talking and they said, ‘Loretta, what are you going to do?’ And I said, ‘I don’t know. I’m just going to tell it like it is.’ Because I think people understand English; I don’t need to change my language for you to understand what I’m talking about. When you go into communities, you do not have to talk down to anyone. I’ve heard researchers say ‘Well we gotta change the language now because we’re going to community.’ My, my- that’s not the way to go. You don’t have to change your language but you have to be careful of the language you use. Anytime you use acronyms in communities, and I heard them this morning, and I’m like, ‘What does that mean?’ Single resident occupancy. Someone told me and I finally understand what it is so I thanked that person profusely because I would have gone the whole day wondering what does SRO mean? We have to remember that we can’t use that kind of language. I listened this morning to some of the things, and I wondered- who is our? Is it our community project together? Or is it my project working in community. I heard hmmm… kind of like on both sides of the street. And I said to myself, ‘Hmm, should I tell them about it tonight?’ and self said 'Yes, let them know that they can’t do that'. It’s ours, yours, mine equals ours. And that we have to use that kind of language. And then I thought about some of the projects that I listened to that were wonderful- oh I wish I could find her. She’s in this room somewhere. She was in our community Co-PIs [principle investigators]. And I listened to what some of the people said and I also listened to other people. And I was surprised that people were afraid to have community as Co-PIs. They were afraid that their science would change. Well if you did your science with the community beforehand, your science won’t change. The rigors of science will be there and the community will have part ownership in the research so it’ll go both ways. You’ll be able to do things and they’ll be able to do things. And everybody will do things together it’s going to be really, really important. But if you don’t risk having community, you miss out on a lot. You’d miss out on a person like me. I’m a Co-PI on a center grant at UCLA. On the center grant, not on a research grant, the center grant. I’m the first of its kind in the country. But had I not had a partner in research who decided to take the risk to step out of the norm, to get off the beaten track- I wouldn’t be here today talking to you probably. But I had someone who said, ‘Oh well, the hell with it. What can they do to my career now?’ And he stepped out and he risked it. How many people in this room, give me a show of hands, are going to risk stepping out of your career path to do this kind of work? Just a few you, my god, I’m scared. Huh? It’s your career path- okay. But I wanted to make sure that some people are going to step out and do the work because I told you this morning one of most important things to have is the passion. The passion means I gotta get out there and risk, not having friends because I’m going to tell the truth. I always speak the truth and so community knows me to say that I will speak the truth. So wherever I go people say, ‘Well Loretta’s gonna tell it like it is. The hell with everybody.’ And I say to myself, ‘Should I really do that? What if I make the governor mad?’ Does anybody care of I make the governor mad? *Laughter* No really- do you? I need to make him mad. I need to ask him what has he been doing with my money. Where is it! We need to talk to our deans. We need to talk to chairs of our departments to get them on board so that they’re not leaving you out there on the limb. And saying, ‘Well you know that’s a little out of the way. We really don’t think we want that.’ And when I talked to a lot of you, I listened to what you talked about, your students. Let your student take risks, support their risks. Let them do the research and support it. You’d be surprised what you’re going to get out of it. Help them understand what it is to work in communities. Tell them it takes time, I’m gonna tell you it takes money. Because please, please, please don’t make the mistake of going to underserved communities and asking them to volunteer. They don’t have the time. They need to be paid for their intellectual properties. Everybody knows what intellectual properties are, don’t they? (Addressing the audience) Okay, do you think community has intellectual properties? Can’t hear you! Okay then, thank you so much- I love it. When you answer me and talk to me, it makes me feel so good. I know that you’re tired; I know this has been a long day. You had a heavy meal, you’re waiting for dessert. *Laughter* You wish I would shut up, so that you could go home. I wanted to take time to stop and ask you, what did you expect me to say? What did you want to hear from me that I didn’t say and what are you going to do? So, like I do with classrooms, I’ll go table to table and give each table an opportunity to ask a question. And if you don’t have a question, you’ll be shamed in the room. *Laughter* Everybody else will look at them and think, ‘Well who are they that they don’t have one single question?’ Oh my gosh, and then some people say, ‘Let me be first’ or ‘No, let me be last’. Or ‘Put me in the middle but please God, don’t let me have to repeat what someone else said.’ So I’m going to ask you now, I’m opening up because I think what I have to bring you is a lot of personal experience of being a Co-PI, of working in a university, of being faculty at a university, of sitting on an IRB for so many years that, you know, I know the IRB back and forth and they keep harassing me. And I’m looking at– how do we explain community-based participatory research or community-partnered participatory research to the IRB. I want you to make one thing clear- community-partnered, community-based- should not be the first two. ‘I’m going to put a sign up that says my university is here in the community. And I’m going to bring my staff down and work on it.’ I’m not going to be the one that says, ‘O! I’m here! I hired an RA [research assistant] and guess what? I have an advisory board.’ If you’re really going to do this work, you’re going to get a partner. And that’s what community-partnered participatory research is all about. It’s so simple. Now I’m going to open it up and let you talk to me. Please harass me, I love it. Someone is going to run around with a mic but if you have a question… you want to be the first table way in the back? Okay!”

Woman 1: “I had a question that I thought you would ask and that question is, ‘Who here in this room is a community representative other than you?’”

Loretta: “I got tables; I got a table right over here. Put your hands up in the air my friends! Yes, stand up my friends; yes they’re all over here.”

Woman 1: “Alright, well that’s’ good to know. I was wondering if the community was invited and was participating in this event and it looks like it is.”

Loretta: “Well, you know, I’m going to give you an answer to that. Some researchers came, they wanted to hear what I had to say. They’re going to pick what they want out of what I said and take it back. Other researchers brought their partners with them, and they’re going to take in and hear all sides of it and then they’re gonna go back and collaborate and find out- what did I say that they both agreed on? That’s the difference between coming here by yourself and coming here with your partners.”

Man 1: “Loretta?”

Loretta: “Yes Jeff. Jeff?”

Man 1 (Jeff): “Looking at how one goes about setting expectations and managing expectations when you begin these partnerships. What are some key things to keep in mind?”

Loretta: “The first one is framing. I tell people to get two or three partners. And frame what you’re going to do. The frame is to plan one corner of the frame. One of them is to look at what you have and the resources to do it. One side is productivity. And the other side is who’s going to participate. You have to frame what you’re going to do before you go in so that expectations between you and your partners are there in the framing process. And so, if you don’t know how to frame, there’s a piece that Barbara Israel wrote in the last CBPR book. It’s the second book on public health and working in community-based participatory research. She lays it out for you really well. So that’s a good place to look for framing. And that helps with expectations and people don’t go beyond what’s planned. Did I answer you? Okay, let me see the next table. If someone doesn’t raise their hand, I’m going to call… yes? Here’s one up here in the front.”

Man 2: “What is IRB and how much about it do I need to know about it?”

Loretta: “Oh, I’m sorry! I just did a bad thing.”

Man 2: “No, it’s alright.”

Loretta: “Institutional Review Board. It’s where you take your research so that it can be approved by a board that looks at the safety and ethicacy of the research in communities or wherever. Whether it’s medical, animal or whether it’s psycho-social. And what they do, what I do, I’m one of the people, as a community person on there, is to make sure that the research is ethical and safe for the participants. And you notice I used the word participant; I didn’t use the work subject. A lot of people know what that word is right? But when you go into communities of color, I would suggest you don’t use the word ‘subject’. They’ll think of Tuskegee or any of the other egregious research projects that have happened across the nation. And please believe me, they know about them. Tuskegee’s not the only one. I’m going to call on…”

Man 2: “Can I follow up one thing on that?”

Loretta: “Yes.”

Man 2: “As a community… potential community partners or were community partners in other projects, how much about IRBs should we know and how much should we care…”

Loretta: “Everything.”

Man 2: “We should know everything?”

Loretta: “And your researcher should take you and let you know about it. I tell all of my community partners, you need to be IRB certified. That’s the only way that they’re going to allow you to be an investigator on the project because you have to be able to abide by the research ethics. And so if you haven’t, every university has a website where you can go to and take the course- in your leisure. It takes about three hours, maybe more, sometimes a little less. But I think it’s about three hours long and they will print you out a certificate. You give that certificate to your researcher so that they can put it in their portfolio so that they know that you are IRB approved, certified. Okay, yes?”

Man 3: “Loretta, I wanted to ask the kinds of dos and don’ts of successful collaborations.”

Loretta: “Okay. Don’t assume you know everything. Don’t ever go into the community with just you having an agenda; make sure your agenda is shared. Do NOT chair a committee by yourself; get a community partner to chair with you- always. Do spend time in the community on other than your research project. Do find out if there are things that you can do to help build capacity for the community. Check out your university to see if there are classes, book clubs that can happen, where you, community and the researchers at the university can get together and talk about different chapters in a book. Do feed folks! *Laughter* And they have grants you know that say no federal grant can feed food. But let me tell you, you can take it, write to Thrifty’s and get a grant. You can take it to Hewlett Packard and write for food grants. There are a lot of other places you can go and get a grant so that you can feed people for the year. So you could have meetings every month, and have food for them. Please remember that incentives for communities to work with you are better than anything to get things started. I always pay incentives. When I run out of money, the people still stay. Because they know I ran out of money, but when I had money, I paid. Another do, do be transparent. Don’t have anything hidden; don’t try to have a deception study in community. It doesn’t work. I have folks that try to do deception studies in communities. Don’t take kids out of their classroom during English or Math because you have this psycho-social piece that you think they ought to participate in and the school said it was okay. Those kids need their English and their Math. And they miss those classes, they are never repeated, unless they repeat the year. And they’ll pass them along because someone agreed to do something. So don’t do it. Always, always, always when you’re going to do a research project with teens, please talk to the parents. Let them know what you’re doing first. Because sometimes parents have a right to know what you’re saying or what you’re doing or what changes you’re thinking of making. Do talk to each other. Do find collaborators. Do put your work out. Do make sure you co-author with community. Make sure that they’re there, that their name is clear. That you’re not just saying, ‘I’m going to acknowledge you in the acknowledgement section.’ But get them to work with you, get them to write papers. Do not worry if you put your foot in your mouth and chomp down on it. *Laughter* If you do chomp down, do find your community partner and say, ‘I’ve blown it, help me fix it.’ Don’t go walk away and just say, ‘Oh, I’ll go back and apologize.’ You need to fix it. And sometimes fixing it takes a little bit, so I’m encouraging you to do that. Do not overdress in communities. Do not under dress with holes in your jeans coming down to the hoody hood. God, what are they? Oh! A good one- please, please, please do not go into the community and say, ‘Is my car safe here?’ *Laughter* because my response always is, ‘Do you have insurance?’ Step off; do step off from the norm. Do take risks. Do get support and do it with passion and love. Believe in what you’re doing. If you’re just going there to get some data to get coursework done, it’s not worth it. Because you make it harder for the next person. That table. Someone there wants to ask a question, I know they do. And if at any time you think this is not what you wanted to have, I’m sorry. They told me I could do what I wanted. *Laughter* And of course, I’m going to do what I want. Because I think that you have a right to talk back to me and that’s really an important thing here is that we talk to each other and we dialogue together. Because when we dialogue together, we all walk away with something. How many people remember the lesson from this morning? Oh dear. One or two people, three people- four? The rest of you didn’t come to breakfast this morning right? Oh dear, how many of you have hands? And how many of you took the lesson with your hand. Yeah- oh yeah! Isn’t that right, you had a lesson with your hand! The vision, the valley, the victory! Okay? I wanna tell you all while I’m waiting, in "Ethnicity and Disease" is where the chapter two is. Chapter one, chapter three, four, five, six and seven are all there. You can go online to "Ethnicity and Disease" and they have a PDF file. And you can probably download it and if they won’t give it to you, you can call my lazy office.  And I personally will make sure that you get one on a disk. You won’t get the book though, I don’t wanna kill the trees. Yes?”

Woman 2: “Yes, what’s a Co-PI?”

Loretta: “I didn’t hear you.”

Woman 2: “What’s a Co-PI?”

Loretta: “Oh, that’s an assistant researcher, I call, they call it a Co-PI. I don’t know what the word Co means it means going together. We’re collaborating together is a PIs, so there’s an academic PI and there can be Co-PIs in the academic institution. This happens to be a Co-PI in the community. Oh! Principal investigator. I’m sorry! *Laughter* Here I go, see you’re supposed to catch me on these things! It’s the principal investigator of a project, the person responsible for the research. That the research will get done. And that we will not skip any of the steps. And that we will do it the way we’re supposed to.”

Man 4: “I have a question.”

Loretta: “Yes?”

Man 4: “A lot of the framing of your comments have been under the assumption that the university is the one who is going out and instigating this research. And a few of the inspiring presentations I heard today were examples where the community came to the university and said, ‘Wow, could you work with us on this issue and bring your insights and skills to match our insights and skills. And that always seems like a much, sort of better beginning to…”

Loretta: “It is a better beginning.”

Man 4: “… relationships. But my question is from your experience could you comment on qualities of universities that might make that easier for some communities and facilitate that kind of entry. Have you seen universities that make that happen a little bit easier than others?”

Loretta: “I see, I’m gonna say this and please God help me, there are a lot of people at the university who are doing this work. I don’t see a lot of universities, themselves, saying, ‘This is what we are going to do.’ I see different departments at universities that are doing some of this work, but I don’t see the whole university embracing it. So I have to say that. And then I have to say that the kinds of people who do this work are those people who are willing to walk out in here. For the most part, what was happened, and I’m gonna say it again because it’s true and it’s still happening today. That our communities are being raped and pillaged by researchers. Raped and pillaged means the researchers come into the community, they’re getting their data and they’re running. And this is, I mean, if you count the number of research grants in any one institution and how many of them are coming into the community to get information and taking it away and how many of them are actually based in community, you would be surprised. But for the ones that are doing it now, they built a relationship somewhere along the way where the community felt comfortable going on a university campus, finding the university person. And it’s hard to look for university people if you’re in communities. Because I always ask researchers to go to the community and make themselves known before they write grants. And if they’ve done that, once they’ve written one grant, the community will run back to them when they need something else, or when they identify another need. I can’t say that there aren’t’ universities that have… we’ll say UCLA. They have a brand new president, a brand new chancellor. And he has said that he is going to engage in community participatory research and that’s great. But if all the departments don’t embrace it, it’s not gonna happen on a university level. And we’ll still have people who are fighting for NIH grants who are doing it as individuals. If you look at your NIH grants that are being written by most people, they’re written by individuals and not… they have university names on them. Universities getting an indirect from anywhere between sixty-three percent to eighty-three percent of indirect. So of course they’re gonna take and want the research to happen. But I don’t see communities getting that indirect. I don’t see communities getting even an equal fair share of the money most of the time. I review grants and the first place I go to is the budget. And I look at the budget first. When they say these are supposed to be community partnered or community-based grants, I go directly to the budget to see what the budget says. Because the budget is the most tell-tale place that you can know if someone is really partnering with the community or whether it’s with their own institution. Yes?”

Man 5: “Yes, Can you speak to the importance of working with communities to not just focus on problem but also to be there for other…”

Loretta: “You have to celebrate the resiliency. I tell people that African-Americans are like cockroaches. We’ve been here since the beginning of time, and we’ll be here until the end of time. *Laughter* Whether you feed us or not, we’re gonna be here. I see my partners over here laughing, but it’s true. There’s resiliency in community. I don’t care what community it is. Whether it’s the grape pickers, whether it’s the orange pickers, whether it’s the farm workers, whether it’s the people who are going in homes and doing in-home care, whether it’s the people on the tenderloin, they are staying there, that have lived years and years on the tenderloin. There’s resiliency in community. We need to identify more of what the resiliency is instead of what the problems are. We need to look more at prevention than at intervention. We need to spend more of our money on prevention in the diseased model. Because a diseased model is what is killing us. Because it’s people making money. And she down here has a question. Unless you have someone in the back. My friend? We go back a lot of years together.  So she can dog me out.”

Woman 3: “One of the things I think researchers wanted to know should also understand and explain when they come into communities is that the community is the expert.”

Loretta: “Thank you, I already said that earlier.”

Woman 3: “There are equal to you at all times in any situation- good, bad or indifferent. They are your equal and they are the expert. And you’re not going to come into the community with having that understanding of sharing the process, sharing the power, sharing the problems, sharing the publication, you have no business being there. Because the community is always the impacted residents  of the community because they stay there, good, bad or indifferent. You are a visitor, you are a visitor. You are a guest. And if the experts don’t want you there, you can go. And you should be able to accept that but if you don’t- I understand how to respect- they are the experts.”

Loretta: “And if they invite you in to be a family member, know that you have gained the trust because you know they don’t invite many people in to be family members and that’s exciting. I have two more… yes- questions and then I’m gonna quit.”

Man 6: “Loretta, what are some of the best examples you’ve seen that bringing community onto campus?”

Loretta: “Wow, in North Carolina, I teach at Chapel Hill and they bring community onto campuses in the schools of nursing. And they actually have them come in at the beginning of the semester and tell the researchers that are in the classroom what it is that they’d like to see happen in their communities. And then those researchers get a chance to have a mix and mingle with them in the university. And then if the researcher’s interested in that particular community, then they call them and go out to it. That’s a wonderful one. I’ve seen where they work with some of the Robert Wood Johnson clinical scholars. They have a two-year to three-year fellowship. And part of their fellowship is says that they have to partner in communities and work in communities. And they have done a fabulous job. They used to be here at UCSF before the project closed here. They’re at Michigan State, Yale now. Duke.  Still at UCLA. And I think I missed one; I can’t remember it. And these are physicians who are giving up time for this fellowship to actually learn how to work in communities so that when they go back to their practices or they go on to heavy duty research, that they’ll have a real affinity for the communities. They have support of mentalists from the university. They’re mentored in methods. They’re mentored in statistical evaluations and equations. And then they also have community mentors that mentor them on how to work in communities where they can call up and say ‘I did this’ and ‘I can’t do this’ and ‘Should I do this?’And ‘What do you think of this’ and ‘Will you support me and go to community with me when I have to present this’. And that’s exciting. There’s UCSF, still has a project that I like. Miriam Minkler, I believe she’s at UCSF. UC Berkeley? Yes, it’s UC Berkeley. She has a project, and I like her project because her project is an open-door policy. She actually brings community to the university, university to community. And she does well, yes Jeff?”

Jeff (Man 1): “A lot of community-based participatory research funding… we’re gonna get into it now a little bit Loretta... is going to R1s, is going to UCs. From a CSU perspective, we need some help. We need some help relative talking to program directors and managers in NIH and some of the other agencies because what tends to happen is those funds are going to those they already know, in many cases. And for many of us, who are moving into this, who have qualified faculty, and are just as enabled, we’re still seeing a bias. So can you help us think about how to reposition or position a message in a way that those making those decisions, those reviewing those grants and those review panels, might look at the CSU as an opportunity to also invest in?”

Loretta: “You’re right. And I think what you need to do is you need to put together a small paper and send it to the directors of the different people so that you can actually get them to hear what you have to say. I think that it should go out to all reviewers. They have a list of reviewers that they keep hidden but they know who they are because they e-mail us all the time. And so the e-mail is for all kinds of things and they can e-mail us for that. I think that we have to look at who we talk to. The project officers are very important. Everybody should know project officers from the different places, even from private foundations. It’s like knowing the community- if you’re making relationships with the community, you have to make relationships with the funders. I tell people all the time we make mistakes when we forget the funder and we actually don’t bring the funder in as a partner. I’ve had a partnership with the Kellogg foundation in the past. I’ve had a partnership with Hewlett Packard. I’ve had a partnership with Kaiser. Kaiser gave me the money and I made them stay and be a partner with us. You have to push folks to do some things sometimes. They stay at the table. I have a CDC partnership that’s fifteen years old. I go to CDC once a year and present and at the same time, I get a chance to talk to project officers in all the different sections, so I can keep my relationships open. Because they come to the presentation, so why not schmooze afterwards.  I can’t lobby, they don’t let you do that. So I schmooze. And I tell people all the time, schmoozing is good. And we all know to how to schmooze. Yes Mark?”

Man 7 (Mark): “Yes, I’d like to add that when to comes to federal proposal, I truly believe in the spirit of proposal and not just something you whip together or whatever, I think you’d do well to contact your congressperson and let your congressperson know that you are concerned that the process might not be merit-based.”

Loretta: “That’s true.”

Man 7 (Mark): “And they will send someone a letter or something, they will tell the contact at the agency and it might make the agency at least think twice before they award a lesser proposal to the UC system.”

Loretta: “I’m going to, at this time, say good night. Goodbye, good luck. And I hope to see you all next year maybe. And I hope next year that I see more community people in the room. I see more researchers working harder because this work is hard. And if you’re not looking for a hard job, don’t do it. I want to hear more about you. Publish in community campus partnership papers, in the journal. It’s a wonderful place to partner. Publish in AJPH, if you submit enough papers to AJPH, they’ll get tired and they’ll actually publish *Laughter*. I’m serious. If they get enough community-partnered participatory research papers, they will publish. Try other journals- Jamma has a wonderful first voice area that you can talk. You can tell stories. You know, let people know what you’re doing. Make sure that your local television stations know what you’re doing. So when they highlight something, let them highlight you! Blow your own horn. Because who else is going to blow it for you? Nobody. Blow it yourself. Thank you very much.” *Applause*