Date: June 9, 2009
Theme: "Translating Research into Action: A how-to guide for your community"
Speakers: Lorenzo Ramirez, Community Liaison
Monica Larrea, Community Liaison
The LUCHAR Project
Si necesita una copia del resumen del Open Conference Call, por favor mandenos un e-mail a .
Q. Tell us more about the LUCHAR project.
A. It is a heart disease prevention study. We have been working at using community based participatory research. This includes all the principles of what is translational research. Both Lorenzo and I have been hired on as liaison in order to bring what the researchers are doing to the community. Including, having the community members on our Community Advisory Committee (CAC).
In our initial years we had folks give us information on cardio health in Latinos. We received that information and made the appropriate recommendations for further grants. This information was provided by Denver Health Medical Center and University Hospital.
People who sit on the CAC include people who self-identify as Latino/Chicano and are a patient or are eligible for care at Denver Health. The CAC has been very deliberate about making sure that we represent every facet about the Latino community, i.e. diverse languages, gender, sexual orientation, education.
Although we’re talking about cardio health, this subject is applicable to HIV issues.
Q. What does TRANSLATIONAL RESEARCH mean?
A. Translational research is a process where by a shared concerns and resources of the community and academic researchers come together to improve public health. It’s the partnering of community, researches, and providers.
So much get’s lost, even through the terminology that is used. After we break it down, it means that everyone has an equal sit at the table. Everyone gets to decide what is best for everyone as whole. Translations research to me also means building the culture of community around the people who are participating in that community.
Q. How do you facilitate this process?
A. This is a new concept in the health care arena. What we’ve been involved with is having academics in the room, community, and health care providers so that we can understand what perspective we are seeing translational research in. Also, how do we all bring gifts to the table to access the community and research? The process takes time to develop because you have to develop trust among each other. Everyone at the table needs to be treated equally regardless of what culture you come from, i.e. academic culture, ethnic culture. This is where some of the challenges have come from. Academicians might think they have all the answers, but have difficulty bridging into communities. A lot of people have been doing this work in the community and now have a natural ability to access and engage the community. The process can be tedious at times.
If we really break this process down it requires a lot of dialogue. Its about building a culture with your micro-community, i.e. relationship building, getting to know, figuring out what assets people have or don’t have. Building capacity with who you’re working with is very important. When we come to the table we’re looking to find a consensus on what is the best for the community. This process also means challenging research methodology.
Q. What benefits have you seen?
A. Holding researchers accountable. That’s been a problem within the Latino community. Researchers have come in the community, collected information, utilizing people’s valuable information, and then the community never sees that information. The community doesn’t feel they have benefited from that research. That has to come back with data dissemination. With LUCHAR we have started to develop more than just a CAC, other programs have been developed with our oversight. LUCHAR has begun to have an effect with programming.
Another success is that we can trust our community members to go out and do this work along with researchers. We do educational meetings where people in the community can come in and learn about public speaking, nutrition, physical activities, etc. We look at what assets the CAC members have so they can become teachers so they can go into the community and advocate for the community. We’ve also learned that we don’t have all the answers. Sending a Latino liaison into the community will not solve all the problems.
Q. What challenges have you faced?
A. What I’ve seen in the past is the development of trust. We all come to the table with an agenda a lot of times. Putting those agendas on the table and having transparent conversations is the first stepping stone to develop trust. It has to be understood that this will take time.
Another challenge is that research by its very nature is about the end results, the outcome. That is not a lot of communities function, especially not Latinos. They are invested in the process, in the conversation, in the relationship that you are building. Ninety percent of the time they will get involved because they know you, not because we’re going to eliminate a disease. It’s about the process. When you’re incorporate a community that‘s about a process into an activity that is about the end result, something gets lost in that.
Addressing the power structure is another challenge. We’re constantly trying to find allies to deal with the power struggles because they’re ultimately the decision makers of what is going to be researched and how it’s going to be researched. The good news is that we are finding those allies.
Q. What has worked? …provide some examples...
A. A good example is seeing people from the community engaged in the process, to see them grow from the beginning of their involvement until now. A lot of us bring us a lot of pieces to the CAC. We learn a lot from each other and from academicians.
We are growing our own. When everyone is equal participants at the table it facilitates this work.
Q. and A. from phone participants.
Q. What are the reactions of the community when you provide them this information?
A. That is the question. How best to disseminate the information? Some populations within the community will not read a pamphlet. Maybe a one-one with them would be better. Some will read the pamphlet. It’s about going back to the community and asking them on how best to disseminate this information to them. It takes listening to them to get it right.
The approach we take to engage the community requires a different perspective. Individuals are really open to the information after they understand what we are trying to do. The community needs the results of the study, but they are not going to line up to hear them. If you personalized the information with the community, you’ll get the attention of the community. With the Latino community, story telling its great to engage them in the process.
Some of the things that the study wants us to do, we have to really stand up and say no, but instead modify it to really fit the community I’m serving. What I do in my community is very important.
Q. and A. from phone participants.
Contact information
Lorenzo J. Ramirez, Community Liaison
303-477-5914
Monica Larrea de Arellano, Community Liaison
303-596-5967
LUCHAR "Latino Using Cardio Health Actions to Reduce Risk"