2015 Public Health Grand Rounds 11/06

PUBLIC HEALTH GRAND ROUNDS Linking Research to Community Health Improvement Jointly sponsored by the Department of Public Health Sciences, URMC Center for Community Health & University of Rochester Center for AIDS Research “The Deaf Weight Wise clinical trial: Community engaged health research with Rochester Deaf populations” Steven Barnett, MD Kelly Matthews, BSW Lori DeWindt, MA Erika Sutter, MPH Rochester Prevention Research Center: National Center for Deaf Health Research Rochester NY has a large population of deaf people who communicate with American Sign Language (ASL). The mission of the Rochester Prevention Research Center (RPRC) is to promote health and prevent disease with populations of deaf sign language users and people with hearing loss through community based participatory research. Members of the RPRC team will describe the development, implementation, and results of Deaf Weight Wise (DWW), the first randomized controlled trial of a culturally appropriate and language accessible healthy lifestyle program with Deaf ASL users. Friday, November 6, 2015 NOTE NEW LOCATION: URMC room 2-7520-2-7534 12:00 pm – 1:00 pm

>> Thank you all for your patience as we work a little bit of strange setup today
with the new location and everything unusual.
Steve and I are connected here, so I can't go any further from-and we
like each other too, so that's fine.
Thank you for coming to Public Health Grand Rounds, November Edition.
We have another session planned in two weeks with an outside guest,
excellent in environmental health and its impacts on pediatric care, particularly.
So please join us.
The Center for Community Health, along with Public Health Sciences,
organizes these Public Health Grand Rounds.
We're always interested in hearing your suggestions about different speakers,
different people we can invite here, comments on the sessions, etc. So please,
complete your evaluation that you should have gotten on the way in.
I see some.
And put your comments on there.
So without further adieu, I'd like to introduce Steve Barnett.
Dr. Barnett was born in Brooklyn, grew up in New Jersey, went to college in Philadelphia,
attended medical school in New Jersey, and did his residency
in Wisconsin, so he's been doing the tour.
He came to Rochester for a Family Systems Medicine fellowship,
and stayed in the area doing research, family medicine, and rural emergency department work.
He joined the UR Department of Family Medicine faculty in 2002 in the Research Division
and is now Associate Professor in Family Medicine
and in the Department of Public Health Sciences.
Dr. Barnett's primary academic focus is health and health care research,
with populations of deaf American Sign Language users, and people with acquired hearing loss,
their families, and their communities.
Dr. Barnett is the Director of the CDC-funded Rochester Prevention Research Center,
called The National Center for Deaf Health Research, and is the Program Director at UR
for the NIH-funded Rochester Bridges to the Doctorate.
He is also Medical Director of Strong Connections,
the University of Rochester Medical Center's Telehealth Sign Language Interpreter Program.
Joining Dr. Barnett today are leaders from the UR Deaf Wellness Center,
and the National Deaf Health Center.
Kelly Matthews is Outreach and Research Coordinator
for the Rochester Prevention Research Center and the NCDHR.
Lori DeWindt is the Staff at University of Rochester Deaf Wellness Center
as a psychotherapist and as a Research Coordinator with the National Center
for Deaf Health Research, and Erika Sutter is the Deputy Director
of the Rochester Prevention Research Center at the National Center for Deaf Health Research.
So welcome all of our speakers today.
Thank you very much.
Thank you very much for coming [laughs], and I will pass these off.
 
>> Thanks, Steve.
>> Thank you.
This mic is in the right position?
Hello, welcome.
So I am Steve Barnett.
And we are going to talk about Deaf Weight Wise,
a clinical trial conducted here at the University of Rochester.
You heard about the co-presenters a little bit, and I don't know which button to press?
>> The right.
>> Which right?
[ Inaudible Response ]
>> There we go.
 
>> There you go.
>> So there's four of us presenting, but it was a large team of people who were involved
in Deaf Weight Wise, and in NCDHR research.
This is a photo of some members of the team and there are folks
in the audience who have worked with us.
I see Jenn.
I see Ian.
I see Nancy.
I see Amanda.
I see Tom.
I am probably missing others.
Oh, Pamela, right in front of me.
Maddie. Jackie.
 
Vince [laughter].
Alright, is anyone in the room not working with us [laughter]?
 
>> So just to let you know about my presentation style, so it's difficult to watch the signing
and read the slides at the same time, so I pause with each slide to give people a chance
to see what it is that I'm going to talk about.
So I start with a take-home message.
Is one is that Rochester is unique in the opportunities it presents for us to study
and understand healthcare experiences and health inequities, and address them.
Community-based participatory research is particularly well suited for the work that we do
with deaf communities in Rochester, and Deaf Weight Wise,
a healthy lifestyle intervention, was successful.
 
>> So just to give you a heads-up for what's coming.
So a little bit about background, about how can research
with deaf communities in Rochester and NCDHR.
Talk a little bit about the Deaf Health Survey, which was the precursor
to the Deaf Weight Wise clinical trial.
Talk about Deaf Weight Wise, and the results.
And then next steps.
 
>> So I know the group here has probably varying levels of familiarity
with the kinds of work that we do.
So we provided a primer for some things that are common knowledge for folks
who are doing our work that people may not think of, if they're not doing this work all the time.
So one important part is that American Sign Language and English are not the same language.
Most adult ASL users have been deaf since birth or early childhood.
 
Most deaf children have hearing parents.
Most hearing parents don't learn sign language, and so deaf community,
there is a horizontal inheritance of language and culture.
So you inherit it from a peer group as opposed to from parents.
Not saying that there is no vertical transmission, but primarily sign language
and deaf culture comes from peers rather than vertically from parents,
or different than other cultural groups.
Many other cultural groups, not all other cultural groups.
That communities are tight knit, shared experience,
shared language, and Rochester is unique.
 
>> So fund of information is a term used here and elsewhere to describe a fund
of information [laughter], that's why we pick that term, right?
It's what do I know because of my life experience?
And how much of that as a hearing person do I know because I've overheard conversations?
And so a deaf child growing up in a household where there's not a lot of sign language,
or in a school where there's not a lot of sign language, doesn't have the same exposure
to that kind of information that I have.
So an example for me as a physician is so growing up,
how did I learn my family medical history?
I learned some of that at the dinner table,
hearing my parents talk about aunts who have diabetes.
That was a way that I'd get that.
So a deaf child at a dinner table conversation
where no one is signing doesn't get that information.
I also learned about it when we went to the doctor's office, because the doctor
and my mother would converse and I would overhear that conversation,
so I would be socialized into healthcare discourse, and I would also learn the content,
so that when I was old enough to go-when I become old enough to go
to the doctor myself someday, I will know the answers to those questions,
and I will know to expect those questions.
Adults deaf since birth/early childhood often aren't exposed to that,
and so don't have that knowledge in the same way I do.
That's just one piece of fund of information.
There's barriers to access to education and there's lots
of barriers to access to employment.
One example in healthcare is similar to other language minority groups,
many deaf sign language users don't ever act with a clinician
who is fluent in American Sign Language.
 
Unlike other language minority groups, deaf sign language users are expected to communicate
in written English or speech read if there is no interpreter services.
No one would ever do that with Spanish language patient,
or Vietnamese language patient, if there was no interpreter.
We wouldn't write notes back and forth in English, but we routinely do
that with our deaf patients, because we expect them to know English.
And deaf sign language users are not included in most health research
and health surveillance, and I'm probably going too slow?
Yes? So community-based participatory research in Rochester with deaf communities started
with the Rochester-well, not started-there was lots of groups doing work together.
And there was a coalescence of that in about 2002, when a grant funded the establishment
of the Rochester Deaf Health Task Force,
which was hosted by the Finger Lakes Health Systems Agency, and that group was tasked
with identifying healthcare priorities for Rochester's deaf community,
and what the task force said was we don't have any data on which to base that.
The Rochester Deaf Health Task Force happened to be meeting
around the time CDC had an open opportunity for new prevention research centers,
so the Rochester Deaf Health Task Force became the community partner for the CDC proposal
to put a prevention research center here in Rochester,
and the Prevention Research Center Program requirement is that researchers
and a local underserved community work together
to do community-based participatory health research.
 
>> So the Rochester Prevention Research Center, also called The National Center
for Deaf Health Research was established in 2004, with a grant from CDC.
Our mission is health promotion and disease prevention with populations
of deaf sign language users, and people with hearing loss,
through community-based participatory research;
understand that those groups are very different in many aspects.
And then our initial research project was
to address the Rochester Deaf Health Task Force concerns that there was no data,
so to adapt public health surveillance for use in sign language.
 
>> Hi everybody, my name is Kelly.
So I notice that the grant they talked about developing, the Deaf Health Survey,
for or with deaf community members, and I'm wondering which.
So the answer to that, it's with deaf community members.
We, as a researcher, it's my responsibility to develop the survey and then to give it.
It's important instead to involve all of the people
that are part of the research in the process.
We have decided the questions that needed to be asked
on this survey, and we got that based on BRFSS.
From the CDC.
And luckily, here in Monroe County, they all but run the survey,
and they did so every five years, so we were able to compare our group and our community
to the [inaudible] community at large in Monroe County.
So we took all of the questions that they had done in Monroe County,
and then we tried to focus on which ones were important to the deaf community.
There was no deaf data at that time.
And we wondered what kind of data it was that they wanted.
So we had to involve the community to develop the survey, and we did it in sign language.
We developed the survey in sign language.
And we considered the best ways to sign the questions, the best way for it
to be responded to, from the ground up.
We had to design it, because there are different ways of signing things
in different signing groups within the community, so we wanted to develop something
that was going to give us the most accurate information.
So we had to make sure we asked it in the right way.
The community was also involved with the translation.
The back translation.
We gave someone questions in sign language,
and then we had to make sure we could back translate it
into English, and make sure it was clear.
When the survey is done, we would then ask, we would ask for people to come back
and have a cognitive interview based on the questions.
And we wanted their feedback of the survey
if their community thought it didn't make any sense, or it wasn't very good, or did it flow?
Or were there inaccuracies in signing?
We needed the approval and the buy-in from the people at large
in our deaf community before we could actually have them be engaged.
The recruitment for the survey was nice.
It was a one-on-one, in-person interview.
And the survey is on the computer, it was not online.
So we had a computer software program that interfaced with the community members.
And when they finished the survey on the computer, they had then the opportunity
for someone to ask them, right then and there, their opinions.
What would you change?
What did you like?
So we based everything on community feedback that we got then and there.
And then how we shared the reserve-excuse me, the results-I'll explain in a moment.
But I'm going to go back to what the survey actually looked
like on the computer, and the software that we used.
It was a touchscreen set up.
Let me back up a second.
 
A tangent computer was used to pull up the information so we had touchscreen responses.
We had different individuals that signed, and they were the sign model.
A person had a preference, and they could choose what sign model they used,
whether it was a diverse person of color, or male or female.
Not all signing people will use American Sign Language,
so we had to use a different mode, Signed English.
So there had to be a variety to meet the variety in the community.
Again, I signed something in a way that perhaps another person would not sign it.
And ASL does not have a one size fits all mentality.
There is no way to do that.
It's a very individualized thing.
And we had to provide that variety of access to the individuals that took the survey.
So I might want something to be more clear, for example, to personalize my own fit.
I can change the background color.
If I see the signing better in a purple background versus yellow.
Or I might want it larger.
Or smaller.
We had to make that accommodation.
While signing, we had to make sure a person could also have captioning at the bottom
if they preferred, to be able to read the English along the way
if they wanted to follow the English.
Specifically, we also had to have a drop-down on the side.
The question is signed, and the answers are signed, so we had to double-check to make sure
that what we signed the answers to be fit with what the actual answers were.
Again, one really great feature of this that we liked, and that I emphasize,
was that we had deaf community members who had vision loss, and Usher Syndrome,
and varying other issues, that they were included in the research.
It's a deaf health survey, and it needed to have the diversity of deaf people
that are represented in the community in the survey.
So we had to also take the option of a deaf-blind person to be able to participate
in the survey, and then that is where a lot of the motivation came
from for making the variety of options available.
They had to be able to change the font size.
They had to be able to change the background color, the sizing of the pictures, and so forth,
to accommodate the varying needs.
That gave them the power to then customize it so they could have their own access.
Again, ASL is not English.
They are two separate languages.
So it is important for us, in terms of medical terminology and health terms,
that they be understood by the people taking the survey.
For example, if I did not have an understanding of a particular term, and this screen happens
to show the term diabetes, the sign for it is really the same as the sign for sugar.
And so person might understand to say "do you eat sugar every day?"
But really, the question is asking about diabetes.
So there had to be something that could expand upon and then define what diabetes is,
and what that looks like in sign language.
So we have this information bubble that can pop out and give the explanation in sign language.
That is what the survey looked like.
We had over 100 or close to 110 participants.
Or questions, excuse me.
Questions that were on the survey.
2008, we had 309 people take the survey, excuse me, 339 people took the survey.
In comparison to the 2000 Monroe County survey that was given,
to the community at large was over 2,000.
 
We broke it into groups, and here you can see how we disseminate it, or broke it down.
We saw education.
Deaf people that took the survey had a higher education level compared
to what the Monroe County At Large had.
But at the same time, we saw that there was an income disparity.
They earned less.
88% of the people who had taken the survey had early-onset of deafness.
And we asked that question because we wanted to make sure
that our target audience was deaf American Sign Language users.
The needs of deaf people vary greatly compared to people
who lose their hearing later on in life.
 
There is a low incidence of smoking in the deaf community.
That was one of the strengths that we found through the survey.
One of the positives that we learned.
And during Town Hall meetings, the community events and so forth, varying presentations,
we had the data kind of become evident for themselves.
They saw it.
The community members then, from the information we were able to present,
chose what the focus should be, and what we should make the study about.
If I had seen data, I might consider something to be important, but I could be way off base.
It might be important to me personally, but the community at large that we were looking at,
we needed to see what they found to be most important as a community themselves.
So they made the decision about leading our research and the topic.
So three things came to surface.
Obesity, suicide risk, and violence.
More like domestic or intimate partner violence.
That is what we mean there.
 
The 2008 findings from the Deaf Health Survey is what this slide shows,
and we make a comparison here.
Can you see it?
Or did you want me to kind of expand on it a little bit?
This is our survey here.
And this is the Monroe County survey.
 
>> We saw the biggest difference there between-in the obese category.
So the community themselves recognize
that as being a high need, and something needed to be done.
So they wanted that intervention.
 
I'll talk a little bit about our shared results, and how we did that.
We used Town Hall meetings, and the slide before, we took that information
from an article that we published.
And the sharing and the dissemination of the information or the article
with the deaf community was not the best answer.
Again, going back to English, so written article is not the best way to disseminate information
because it's in English language, but if we're giving it
to the deaf community, it's not a good match.
And it could be that there wasn't going to be an understanding on what the data was showing.
So we had to determine how to best share it.
And we considered the option of doing so in dialogue,
and we did that fully in American Sign Language.
The community appreciated that, because it was very clear,
the explanation of results was very clear.
It was like a conversation with a friend.
So I'm going to turn it over at this point to Lori.
 
>> Hi everyone.
My name is Lori DeWindt, and I'm going to talk a little about Deaf Weight Wise,
which is the intervention that we developed.
And really this is based on, as Kelly mentioned,
obesity was one of the three priorities that the community touched on.
So it was a perfect fit, and that's where we started.
Now, again, we used the strategy of randomized trials.
At this point, it's really based on a program that was developed at University
of North Carolina, and so we used, that was women in rural areas, was their project,
but we felt what they had developed was a very good fit for us,
and in fact, it was very successful.
With this process, we started the development phase, and that for us takes a long time.
Because the translation is a complex, time-consuming process.
If somebody could advance it for me [laughs], here we go.
Okay. Prior to establishing this, the clinical trial, what we did was IDWW,
which was we conducted interviews prior to the project starting, and again,
it's community based participatory process.
And it's a dialogic process.
It was conducted by video phone.
And we wanted to look at what were the things that would facilitate, or what would be barriers
to the healthy lifestyle people were needing.
So what we found through this process was a few things.
 
Social barriers, emotional barriers, especially anxiety and depression.
We found those often in that process.
And then limited fund of information regarding diet and physical activity.
So we saw that across the interviews.
One thing that was interesting to us is that people who looked pretty normal
to us might have a different view of their body image,
so people who were overweight might see themselves as healthy,
so those were all interesting and important findings for us.
From this information that led us to the development of the clinical trial.
I think the most important aspect for us, and to talk about here,
is how collaborative this work is.
Now, the team is deaf led.
And that is a really important component.
And we translate the curriculum, not only language wise,
we did start with UNC's materials, and we made adaptations.
We had to make the entire curriculum deaf friendly.
So there is some information that might be known as fund of information for hearing people
that deaf people would not necessarily know.
For example, the word cholesterol, as simple as that, we know that, you know, we can sign that,
sign for cholesterol, but we, you know, a lot of people might not know what that means.
So then there is an expansion or explanation of that term that is necessary in an adaptation.
Now, there are some concepts that, you know, people would prefer
to see visual representations rather than someone talking about it in sign language.
So then we had that as part of it also.
And so we developed our intervention using all that knowledge
to make it as accessible as we could.
We had a training curriculum, so that we could train everyone who was part of the intervention.
And again, the translation process, as Kelly had mentioned, we did film translations.
Then we back-translated them, to make sure that people saw that as equivalent to the English
that we started with, and when we, and again,
I should just say those were things that were done in person.
And that in-person component is important in the deaf community.
So if some people would start, you know, for instance, in an interview and then go back
to the touch screen, and so we had support there for people.
What people responded to were questions about dietary risk assessments
and physical activity assessments.
So those are the questions that we had there.
The version about childhood experiences ended up becoming an important part
of our results, which we'll talk about later.
The adverse childhood experiences.
So, the intervention.
As you can see, it was a 16-week project.
Community members would come to this group session over at NCDHR,
over in our office in the Sanders Building.
We had trained group leaders who are themselves deaf, and fluent in ASL.
We took time with the curriculum.
We gave them books.
We had PowerPoints.
We had discussions.
An important part of the information was actually the discussion piece.
The ability to share information and experiences,
and that in that way we could really cement the learning.
And the way that we approached the motivational interviewing part was really based
on drug and alcohol treatment concept.
And so motivational interviewing is used prominently in that field.
So we took that tool and used that as part of our process.
Then we did a maintenance phase for six months.
Where we had meetings, where they would again come in, twice, plus we had video phone calls,
and that was our follow-up phase.
 
Let's talk a little about the criteria for our study.
Ages 40 to 70 was our group.
And the BMI was 25-45.
They had to be somebody who was in the Rochester area because it required them to come in to us.
And in our next study, we're going to explore some remote use of this,
but for this first initial study, we used only local people.
Then they were randomized to immediate group interventions
or the group interventions that were delayed by a year.
So we were very consistent across the groups.
So staggered starts did have the same intervention eventually.
The data collection.
Now, this is really an important part where you use biometric measures with CRC,
which we really appreciated that, and we got some wonderful help from our team with that.
We got height, weight, blood pressure, then we also tested the blood for lipids, glucose,
and HGB, A1c, and what those results they met with Deaf Weight Wise counselors
through videophone or in person, and to discuss.
Each person got a discussion, a live discussion, about their own personal results.
So they got more health information from their own blood work results,
which was a nice benefit for them.
We did have a survey interface, again, with health demographics, psychosocial measures.
We used the PAA and the DRA for the in-person interviews.
So we went through that.
And over time, we saw this aspect change.
So our main outcomes.
Our goal for this trial was really weight change, of course.
It's, you know, Deaf Weight Wise.
The BMI was also a change we were looking for, and then change in both of these,
the numbers of both of their assessments, the DRA and the PAA.
This is just a brief look at the process that we engaged in,
what the flow was throughout the process, which you can see for yourself here.
That's how people progressed through it, and we had 104 people altogether that we randomized.
 
Now, a significant part of our work was really that this program was recruiting
and retaining deaf people in a first trial of its size.
And this is a new thing in our culture.
So I know research is usually considered as, you know, other people.
But what we were really looking at was trying to be specific
to the deaf community in a really initial way.
So we had to explain a lot of things about the trial, about-we had a number of events
that we attended, where we talked about the project.
There was a lot of outreach involved.
Now cultural events were important for us, where there were community based events
that were already happening, but we were recruiting at these events
where people were already coming for other reasons,
including like we did the Scale Crushers, when they came to Rochester.
But healthy lifestyle was, you know, what we emphasized as part of it.
So we developed alternatives for individuals who didn't quality for the study as well.
So we looked at the criteria, we looked for people who met that criteria,
and then if they didn't, we gave them some options.
We do have the Deaf Wellness Center here, and they have an eating group.
And that is a nice resource, or an alternative that we made available
to people who didn't meet the criteria.
So now, well, actually I'll talk a little bit more about this.
The blogs.
So we had Tiffany, who is one of our deaf medical students.
Third year now.
Became part of the project, also and she,
actually she is fourth year now, what am I saying?
Yes [laughs], yeah, she's fourth year.
Medical student now, and I'm going to actually turn it over now to Erica
and let her talk about this part.
 
>> Hello. So for the intervention, the whole study,
what we used is a really unique informed consent process.
So instead of giving somebody a 12-page English document,
we created a sign language video consent.
So it turned into an 18-minute video that participants would watch first.
When they came in to enroll.
Then we met, they met one-on-one with a researcher after the video,
got other questions answered in sign language, and then all they had
to do was sign a one-page English consent form saying
that they watched the video, they met with the researcher.
So it was a really nice process, and it was great to work with our IRB through that process.
IRB was great in adapting that for our community.
Oops, I forgot the remote [laughs], oh go ahead, thank you.
So for enrollment, we were able to recruit 151 people to come in for screening.
By the time we got through some of the criteria and the exclusion criteria, we had 104 enroll.
So only two people actually at the end here, 106, only two people declined participation
after watching the video due to the time commitment of the two-year study.
But so we end up with 104.
The average age was 53 and a half.
We had about two-thirds women, 92% white.
The mean BMI you can see 33.3.
And after we looked at all the baseline demographics,
there were no significant differences between the treatment group and the delayed group.
So everything was pretty balanced, after our randomization.
And then one interesting thing we wanted to show, we had 19% who self-reported
that they had diabetes, sorry, that had diabetes.
On the computer survey 13% said they had diabetes, but then after we did the blood work,
at baseline, and saw their A1c levels, there was another about 6% that actually had diabetes,
but didn't know it and didn't report it on the survey.
So that was a pretty high diabetes rate for the population.
And it just speaks to some of the fund of information issues
in the community that we mentioned earlier.
So for the 16-week classes, which was the intervention itself, we had great attendance.
About 80% attendance in both the treatment group and the delayed group,
which was our control group before they received it.
So but this was a nice evidence of in both arms
of the study we saw the really consistent attendance rates in the one year stagger.
Data collection, we also had really high attendance.
We ended up with about a 90% overall completion rate
for the six month-every six month appointments-throughout the two years.
And that final follow-up.
We worked really hard to get everybody back, and we were pretty successful.
We were really happy about that, and I think that really speaks to the connection
that the participants felt with our team, and having, you know,
a deaf-led intervention with sign fluent research staff.
So we were really proud of these rates.
So this is our-these are our main outcomes.
What we're looking at so far.
So this is changes from baseline to six months.
That first assessment.
So at this point, the six month point,
half of the study had the intervention and half did not have it yet.
So this is kind of our treatment control point.
So we saw a 3.5 kg difference in weight, and almost a point and a half BMI change
for the better after receiving the intervention.
We saw changes in their dietary risk.
So their dietary risk decreased if they got the intervention.
Physical activity also.
So these are approaching significance.
Not quite significant, but there was a big change
in the immediate group itself from pre- to post.
But some of the delayed group participants who hadn't
yet received the intervention also got better and improved over time,
even though they hadn't had the intervention yet.
So there was something about just being in the study
that had already sort of motivated or influenced them.
They had already gotten blood work at baseline, got the results explained to them
in sign language, and so then there might have been really even a connection for those
who hadn't gotten the intervention yet.
And I just want to point out, this is from baseline to six month.
In the intervention group, from week one to week 16,
which was a little bit before the six month point, we had an average of 12 pound weight loss
for people that came to group about 14 out of 16 classes.
So a high percentage came to at least like 13 or 14 classes,
and got about a 12 pound weight loss average.
And so that is, remember two-thirds women, and a third men.
So we like to show this one.
This is 5% body weight loss is clinically significant for a lot of reasons,
which people in this room can probably explain better than I can,
but that magic 5% is really important.
So we had 58% of the intervention group lost 5% of their body weight.
And again, even in the delayed group, which didn't have an intervention yet,
14% also lost that much weight without having an intervention yet.
This graph shows you pretty much the same thing I just said, except it shows at 18 months.
So after the second group got their intervention, they were almost the same
about 50% or so lost 5% of their body weight at the 18 month mark.
So both groups.
So this is right after intervention for both groups.
It was over 50% lost that 5% of their body weight.
Sorry [laughter] there's a lot of numbers.
And then you can see, 24-month mark, six months out, and actually 18 months out from
that first group, still maintaining that weight loss.
Not quite as high, but the maintenance numbers were really, really strong also, about 45%.
Still lost that 5% of their weight.
 
>> Yeah, so this again, maintaining was important.
So this speaks a little bit to the success of the intervention that two years out,
or six months out for the delayed group, they were maintaining all of these key outcomes.
Their A1c was still lower than it was at baseline, their dietary risks were still lower.
Their waist was still lower.
They were really able to maintain it for as far as we followed them so far.
So what is next for us?
We are doing Deaf Weight Wise 2.0.
That is going to start next spring, 2.0 is because we're adapting it
to 21-40 year olds, instead of 40 to 70.
We're doing it with a younger group, adding in some technology, and apps,
and also going to try it out one-on-one with video phone.
So some people will get that same group class, but some people will get it one-on-one
with a counselor over video phone.
And that is funded by the Center for Community Health Prevention Pilot.
Thank you [laughs].
So we're hoping what we learn from the remote interventions
and from the group intervention has implications
for other intervention topics in the deaf community.
HIV, smoking, suicide, partner violence is a big one in the community.
And then we continue our Deaf Health Surveys.
We will probably do another one in 2016 or 2017.
Trying to match the Monroe County time frame a little bit, so we still get surveillance data
that can help us build these interventions.
 
>> Back to the take-home messages.
Does anybody have any questions?
[ Inaudible Question ]
>> Anyone want to answer that or?
>> I missed the question.
Can you repeat the question?
I don't mind answering, if you want me to answer.
 
>> There are three deaf individual staff members that were connected to the community
and through fliers, going to events, blogging, Facebook, social media in general.
 
The recruitment depended on our network with the community.
That was really vital.
There were Town Hall meetings that we hosted, and we showed our findings.
At the same time, we would also publicize that we have more opportunities in the future,
and to check and see if people would be interested in being recruited for that.
It was important to get that positive relationship established in the community,
because the research in the deaf community is something that is very recent.
 
>> Actually I just-I just add to this, Lori.
The counselors who led these, mostly it was Kelly and myself,
and then there was another faculty person who was also deaf.
We're all deaf, we're all primary sign language users,
and we led the group through the curriculum.
So throughout that time, we met and reviewed with ourselves
that we were standardizing our approach, so that we weren't going off in different directions.
So we made sure that we stayed on task that way.
>> And I know that some of you might be considering or thinking
that this is no big deal, you could just use an interpreter instead,
because they can interpret whatever is being said, just have that recruitment
through an interpreter, but I have to tell you it really is not the same thing.
That connection, deaf to deaf, was really the best way that we found to develop
that recruitment tool in the community.
>> And we had a record, something like 15 or 20 letters of cooperation
for the recruitment process during like 2010, 2011, when we were starting to recruit,
there are so many organizations in the deaf community that we just kind
of formalized the recruitment process, and got letters from different networks,
and so it was really community driven.
>> I am just wondering if we had any plans to investigate the partner violence?
Because it seemed to be, according to the statistics, so much higher in this community
when you investigated, and may want to do an intervention.
>> Mm-hmm.
Want to answer that?
>> This is Lori, I can speak to that.
The Deaf Wellness Center did do some follow-up with that,
and the intimate partner violence aspect, and the survivor's group is one thing that they had.
And we have providers who specialize in that work.
And then we have a perpetrator's group that we run as well.
So we are doing those kinds of interventions, and we have done some interviewing
with those groups, so we are working on that in a different way.
It's not a research intervention per se, but it's an intervention
that is happening in the community.
>> And that was a grant from the CDC for that qualitative research?
Is that right?
>> Yes.
>> That's correct.
>> Yes. That's correct.
 
>> Yes, and we also have a grant to investigate the third priority which is the suicide risk.
We had, okay, career development award to look at that through survey.
Through a survey.
Question over here?
>> Congratulations on your study and being able to work with the deaf community.
We at Mother and Baby [inaudible] Medicine are trying to reach out to deaf moms,
to help us with our program and how to better intervene,
and actually tomorrow we are having a focus group meeting
at the Rochester School for the Deaf.
And if any moms in the audience would like to join us, who are pregnant or may not be,
but are planning now, we would love to have your participation, just see me afterwards.
>> Thank you.
>> Thank you.
>> I'm so impressed, I'm so impressed with your study and with your ability
to do the Monroe County Health Survey, when we've done population, because the amount
of work that [inaudible] put in, unbelievable.
It was hard enough without [inaudible], you know, with communication issues,
but I am curious about the rate of success on retention of the program,
and I wonder if you all attribute that to, you know, something inherent
in the deaf community liking community, or if it is attributable to the amount of time you spent
on true community engagement, and wonder if you would expect similar results with that kind
of community engagement among different populations maybe that aren't deaf?
>> I think really it goes back to what Lori and I had spoken about.
Culturally, we are deaf.
The counselors that led the program were deaf.
People that were interviewing and were interviewed were all deaf.
People that were participating in the group were deaf community members, so they became friends.
They all lived in Rochester.
Had they not been friends before, they certainly were afterwards, having this experience.
So I also think that the staff here got closer because we saw the folks that were involved
with the study often, just that, you understand the more connected you are
with the community the better the results are going to be.
>> Yes, I'd just add to that, I'll just share one thing.
With retention, I think it's nice to know that relationship is so valued in our community,
but also having everything primarily happen in sign language,
and that has a huge effect on the community in general.
So not only did we work with the people who were in the group,
but sharing information is a primary value in the deaf community, so making better choices
about food, that kind of information then trickled back into the community in general.
So it's that shared sense of community that was part of our positive results.
>> I also wanted to emphasize that point, that the deaf staff are also members
of the deaf community in Rochester.
So had we had another person come in from out of town, temporarily,
I don't know that we would have had the same rate of retention that we got,
because of the fact that the staff was there, and there was this interconnectedness
that was felt, and an appreciation for valuing the community at large.
So I think it was just more than data at that point for them,
and I think that the community created that connection.
Because I think in the past, the deaf community has been a little burned by collection of data,
and not really having that need recognized.
The communication piece being so vital.
And we took advantage of having the opportunity of events to create that atmosphere
and to have that communication available.
>> Deaf people don't really tend to have a good understanding or visualization
or picture of what deaf research is.
So there was hesitation.
 
Often research mainstream research-they'll go into the deaf community and they'll only go
in to collect the data and then they'll leave.
So they're kind of tapped into, and then they are not followed up with.
They don't know what the results are.
So we took the time to build the relationship and to maintain the relationship.
It was something that we had to develop trust in doing in order to get the retention.
And then we went back to the community, and that was something that a lot
of people hadn't done with their research in the past.
>> A person had a certain counselor for the intervention, we did not have the counselor
at the six month data collection questions,
and so I think we trained 10 counselors all together, and then we had sort
of separate research staff doing the data collection so that people didn't feel
like their counselor was going to know if they didn't eat well this month or whatever,
so we were really careful to balance it that way too.
 
>> Do we have any plans to do a traditional follow up to see
if the achieved success is maintained over time without [inaudible]?
>> We have heard stories anecdotally about things changing, like in groups,
or sort of social environments, like at the Deaf Club.
Beyond the two years, we don't have plans for the same study group,
but two years was a pretty long time to follow people.
Most of the literature only follows people for six months or 12 months, so actually Dr. Pearson
when he was here was saying let's go another six months and do the 24-month data collection,
so I think for weight loss literature, I think that's pretty far out,
but if we could follow people longer we would.
>> You said the Deaf Weight Wise 2.0 is your strategy for the spring?
>> Mm-hmm, yep, and 100 people again.
 
>> Anything else?
>> Okay if there is no more questions, thank you all so much [applause] you're wonderful.
>> Thank you for a fantastic team of interpreters also, thank you, thank you.
>> Please complete your evaluations.