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RIIL WEBCAST NO. 3
APRIL 10, 2002
Presenters: Jim Budde and Cindy Higgins

>> Laurel: good afternoon, this is Laurel Richards with the
research information for independent living project.
Welcoming you to another webcast, and at this time the title is
Saying the Right Things and Saying Things Right.
And in this case, it refers to affect tif and efficient research
translation.

And we're going to focus today on the whole issue of
researchers writing for nonresearchers, and it is in part a
response to the sometimes spoken criticism of people working
in independent living and other fields that researchers pretty
much write for researchers and those of us who have a stake
sometimes a very large stake in research outcomes are not -- do
not have opportunities to be exposed to findings that are being
done by research projects.

Today we have two individuals and perhaps three who have
great expertise in the area of research translation, sometimes
called dissemination and utilization of research, and that is
Cindy Higgins and Jim Budde who are also with the research
information for independent living project, and prior to turning
it over to them, I just want to recognize that this project is
possible through NIDRR, national institute for disability and
rehabilitation research, and it's part of its initiative to facilitate
and to promote use of research by nonresearchers.
So Cindy, I'd like to turn it over to you now.

>> Cindy: hi, I'm Cindy Higgins and by trade I'm a journalist.
I've worked the last 14 years at the University of Kansas, taking
information that people in the field say they want and need, and
working to communicate that information in formats and
language to different audiences.

Right now, to make relevant information accessible, we have
gone beyond the usual journal articles and conference
presentations practiced by researchers.

For instance, right now we're using the internet for our website,
which is called www.getriil.org and that's a database that's full
of easy to ease and easy to understand research information.
To date, we have about 950 research summaries about
independent living.

I just wanted to get that in.

In today's session, we would like to quickly discuss why
science information has a tough time getting to the people who
can most benefit from it.

We'd also like to talk about ways to continue making research
more accessible and more relevant and the language that is
used to communicate research findings.

>> Jim: Cindy, this is really kind of a problem when we first
started this.

As you recall, people like a lot of those folks that are out there
on the phone were just -- wanted research but had really bad
vibes about the research, simply because they couldn't get it
and they didn't understand.

And I think from one standpoint, NIDRR, National Institute for
Disability and Rehabilitation Research recognized that.
Then the challenge became ours and Cindy I would have to say
you've done a great job in both doing -- using the research to
help people understand it and developing the products that
people on line can used to.

>> Cindy: that's always nice to have your boss say nice things
about you and that's Dr. Jim Budde, the director emeritus of the
Research Training Center.

You have been in the field so long, before we get really into it,
why don't you tell us some things you've picked up on research
information dissemination.

>> Jim: it was interesting when we started the center in 1980,
our Research and Training Center in 1980, the idea then was
let's listen to what people want in the independent living field
and what they need in the field and let's develop something that
will help them in our user research to make it better and prove
that it works and then let's take that product and deliver to the
people.

And in those days, we used a catalog.

Well, things have changed and I'm very thankful that we have
this RIIL Project because now we can use a lot of other
techniques, when we first started three years ago, Lex and
Laurel and a bunch said we don't think the internet will come
into play.

And new studies proved that wrong and the whole information
technology field is absolutely exploding, and I think it's
important for us in our mission, and I'm talking about both
RIIL and the Research and Training Center, that we keep up
with the technology and provide information in a way that it's
easy to understand, and you can use it for advocacy, to improve
your services or just for general information to improve your
quality of life.

>> Cindy: okay, well, before -- as I said, when we were getting
ready to get started, we started the project, the RIIL project, I
did a big literature review to find out what was working and
what wasn't and getting information out there and one of the
problems has to do with science and research itself and the
people who practice it.

Because scientists trained to document their research studies,
and they emphasize the procedures used, and they do that so
other people can replicate their studies.

Now, scientists find that interesting, but audiences always want
to know what's in it for me.

So often when scientists are writing these articles, a lot of the
information is all about the procedures, and so another thing we
found out is that -- and this is no surprise -- but scientists often
review peer-reviewed journals or conferences as the only
appropriate venue for their work.

They want to talk to their fellow scientists and they forget
about the consumers sometimes or maybe it's the end of a
research project and they've run out of time and money.
Some scientists just don't want to look like publicity seekers.
They think if they go out there and they're in the popular media,
in a way they're discrediting the whole field of research.

>> Jim: so if a researcher doesn't communicate it to people
that need the information, you know, it's really kind of their
own fault, but in some ways we've got to find some ways to
help them.

>> Cindy: I think -- and this to me -- I mean it's obvious.
I'm a journalist to works with researchers, but researchers are
trained as scientists, they are on not journalists or graphic
designers or film documentary makers, yet when they get --
they do their research, they're expected to disseminate this
information and use all those traits and qualities and they're just
not trained to do that.

So I think that's a problem, but we're talking about problems,
but we need to get into solutions, too.

I think that if consumers are having a problem like we don't
understand the researchers, the research or it's not how we like
it, or the scientists aren't giving it out, they just have to remind
scientists and reachers that usually they're publicly funded and
the public does have a right to know this information.

Also the rehabilitation act of 1992 amendments does require
NIDRR projects, which is a lot of work is being done with
NIDRR, to ensure widespread distribution in usable formats
and wide dissemination.

So that's going back to the source, which is science and
research,, but another obvious barrier is that you want to get the
information that people want to know.

It's not what the researcher thinks would be exciting to go out
and investigate and that's the reason why they introduced
participatory action research, probably around the early 1990's,
I just was very excited by ut because it's also relevant to
dissemination, and here at the Research and Training Center
we've done a lot of work with that and the consumers report
method. And Jim, I think you're the expert in that.

>> Jim: well, again, in 1980, because we hired people with
disabilities and our managers and technicians here have
disabilities, they could help us understanding some of the
issues concerning research, but even there there as not the same
thing as a person with him with meals or that had inaccessible
transportation, so we had to go to the community, to the
independent living centers and find people who can become
members of our teams to help us to better understand what it
was that was needed, if it would work, and how best to get it to
the people that needed it.

So we developed something before par that was called
consumer powered teams.

In other words, the consumer would be part of research team
and help us with it in the same way -- and they would be with
equal importance as any of the staff members.

It was just really kind of a total quality management team
where we all tried to find out better ways to find out what the
problem was, how to make something better, how to use the
research to do that, and to get it in the hands of the people that
needed it.

Now, one formal example of it that we've used for research,
and it's a soft kind of research, is called the consumer concerns
report method.

And we used it in the RIIL project to go to the field and ask
you people that are in the field what it is -- what kind of
research information you needed, and that would help us so
that when we went and started finding the reviews, the ones
that Cindy is developing and putting on the get RIIL database
that you can get into, what we did was ask the people or a
group of who we thought people represented everyone what are
the questions that we should ask in terms of what research
information do you need.

And it has a rating system on what is important to you, and
what are you happy with, and when something comes up that is
very important and you're unhappy with it, all those items that
fell in that category told us that that was an area that you
thought something was important but you didn't have it in your
hands.

And guess what, the number 1 priority was?
Anybody know?

>> Cindy: I can guess.

>> Jim: go ahead.

>> Laurel: it must be advocacy.

>> Jim: that's what it was, it was advocacy.

And if you go to our site, whole set of priorities is on there.
So in capsule here, what we were talking about is, is that from
the beginning, it is so important to have consumers involved,
people who are affected by what it is you're going to do helping
you to better refine the problem, to help you to develop
interventions and to get it out in the hands of people, and when
we're using research tools and we have two cases here, one case
was that we used ACCRM to identify information that was
needed and the other case when Cindy did the literature
reviews of research that was out there that could tell us better
how to communicate to nonresearchers, we used the research
again.

>> Cindy: Laurel I want to check to see if we have any
questions to this point.

>> Rachel: we have gotten a couple of questions and some of
them you have actually answered along the way, but one of
them -- maybe you can elaborate a little bit more because
people are interested to know if there is something people with
disabilities can do to encourage researchers to better share their
information, and you know, they're also asking how they can
get on these research teams or can they give you input you can
then translate to the researchers? That there is somebody out
there who wants to give input or be involved, is there a way to
do that?

>> Jim: you know, NIDRR has a list of all of the projects --
research projects and other projects that they have.

And they have a website, and my best guidance would be to go
to that website, find out an area that you're interested in or
location that's near you, and volunteer to serve on a consumer
empowered team and if that doesn't get any results, call me and
we'll just see if we can't use a little advocacy to help you along
the way with it.

The other issue I think is how do you get researchers to use the
brochures and the literature review that we have.

I think there is two issues here, one of them is advocacy, which
is you can take the brochure that we have that Cindy developed
which is very simple, and you can take it to the researcher or
send it to the researcher and say, you know, here is a way to
translate this so managers, service providers, even politicians
can better understand what you do.

Could you use this to translate this into a one-page document
for us?

It wouldn't take much time.

Would you please do that?

And, you know, at this stage of advocacy, that's almost the
same thing as providing technical assistance. It's soft advocacy.

And of course if people -- if researchers don't do that, then as a
good advocate would do, you'd go on down the line and use
approaches that are more aggressive to get their attention.

>> Cindy: Jim, don't you think if you were a consumer, just
heads up, because most research organizations have a
relationship with a different local organization.

I know here at the University of Kansas, the center is tied in
with several organizations, say, such as the local independent
living center.

>> Jim: that's true.

>> Cindy: and so you know, you could look for bill boards,
you could ask your local organization if there is a research
project going on. And sometimes in newsletters you'll see
those, too.

>> Dot: I think that's a good point.
Can I check on that.

>> Cindy: this is Dot Nary.

>> Dot: independent living centers get a lot of information and
the staff has to wade through it and figure out had a people
want to hear.

You might want to contact your local center and say if you
have information about responding to announcements in the
federal register or commenting or participating as research
participants those are the things I'd like to see in the newsletter.
So there might be a way to get your local centers to provide
information and certainly that makes every effort stronger
because when consumers participate, we know -- that's
important.

>> Cindy: for me, it's exciting when consumers participate
because I'm always interested in the format, you know, how
you're going to get that information to the consumer.
What do they like?

Do they want paper?

Do they want something like say the webcast, internet, how do
they want the information?

And often we find that people like tiered information.

You might have a one-page fact sheet for a lot of people who
just want to know what's going on.

Other people might want more in depth so we might take the
same information and make it into a brochure and then for
people who really want to know every single detail, we have
the entire research report.

So I think it's really nice to know if consumers would keep
telling researchers, if they're dissatisfied, well, let people know.
I want to do my scob right.
So let us know.

>> Laurel: Cindy, this is Laurel.
One thing we can offer as the research information project RIIL
is that if folks out there have specific research projects or ideas
they'd like to know more about, if they could send us -- either
the projector the issue, we can see if we can arrange a webcast
with those researchers.

We may or may not be successful, but we would certainly very
much welcome that opportunity.

>> Jim: the other issue is if you have a concern, please go to
www.getriil and see if those other studies might provide
information that would help you.

>>Rachel: we have a couple of other questions, and I'm going
to ask them out of order that they came in.

So for the audience, just be patient because I just got a question
that's really relevant to this discussion.

And this question comes from a researcher, and they want to
know what are your suggestions for getting the clear and simple
write ups that we do create out to our audiences?

This group actually writes plenty of stuff without garing honor
methodology, but it's emphasizing that it's really a challenge to
get it to the people, and they say they don't necessarily know
about my organization or find us on the web or read our
newsletters, and it's difficult to get news into the mainstream
press.

And their final comment is it doesn't matter how great a
produce you create if no one ever reads or watches it.

>> Cindy: that's a big question. I would say if researchers
maybe should concentrate on researchers, since I'm a journalist
and they should be open to hiring a journalist to take their
information.

I think a big thing, too, is once the informing is written up, test
it on consumers, have different people read it and say did you
understand it?

Did it come across?

Regarding the general media, I don't think -- researchers don't
understand how the general media works.

I was just at a science writer's conference in boston and we
were talking about how to get science, just hard science, social
sciences into the mass media.

And they just don't have that much room.

I mean, readers would rather read about sports or lawn and
garden shows, science -- that's a smaller news hole.
And the reporters want to know about breakthrough studies,
you know, they want to know something new.

Reporters themselves don't understand that research is almost
like a point on a continuum.
They're just sometimes adding incremental parts to it.
So the reporters don't understand how that's done.
And what we've been worried about here is that do the
consumers even understand how research is done?
And so, Jim, there was a product that Glenn White and Dot just
finished up.

>> Jim: well, I'll go onto that, but I want to go back and
answer the other part of this question.

I think this group, the way it sounded to me, the researcher or
group of researchers knew how to write in simple language,
and I would challenge them to compare that to the guidelines
that we have up on site and available to see if it meets the
criteria, and you can go -- if it does you go right ahead and
boast that it meets the guidelines and use that for selling.

The other issue is how do I get it out?

You know, that's a thing that we keep struggling with in this
new age of technology, but if you go back to marketing, it's like
saying who is that consumer audience?

And in this case, what we're trying to present and present in a
simple format in some ways will work as well for a person with
a disability as a service provider, as an independent living
director or even a person in Washington that's making policy.
Because it comes in a one-page abstract and goes right to the
bottom line of what was found versus going -- versus requiring
the person to wade through it.

So if you have a population of people with disabilities, service
providers, service managers and politicians, then one of the
things you have to do is to get access to them.
One of the ways to do that is to use mailing lists.

You can buy them.

ILRU has an extensive mailing list that they use to get
information out.

We have a mailing list, and then the question is, once we have
the product, how do you advertise it in such a way that people
will believe it's beneficial so that they will try to access it or to
get to it.

Then of course if you have addresses, you can do mass mailing
of your product, but that gets to be pretty expensive as well.
So what I'm saying is, if you wanted to disseminate a product,
you have to have a sound marketing plan.

I would go to the no way guide in a minute, Cindy, but in all
fairness, I would ask that we not answer any more questions
before we give you time to go into how do you write research,
what did you find in your research and how do you write the
research up.

I think we need to get into the techniques of doing that before
we get too far down the road.

>> Rachel: okay, I will hold these other questions.

>> Cindy: after we did the literature review, then we produced
the how to guide condensing and translating researchese for the
general public.

Many there I don't know if there is anything new.
It's a compilation of journalism's best practices.

You know, picked up on information from the National Center
for the Dissemination of Disability Research, which is
dynamite, and so we did that booklet and then we also have the
guidelines brochure which starts out know your audience.
We always say when you're communicating with anybody,
they're busy, they don't want to have to wade through a bunch
of words, so you use your every day language.

I think that Walter Cronkite always said when he did his six
o'clock broadcast he imagined he was talking to my mother.
I imagine I'm talking to my aunt Nancy in Iowa, and she would
just look at me strange so I have to bring it back to a different
level.

What we find when our research studies is that you have to
focus, journalists always have to focus.
What's your most important information?

And then you have to condense that information, because
journal articles are 20 pages and so you almost have to be able
to digest our information and condense it down to one page,
condense it to a paragraph, even one sentence because you
really have to know your information.

So focus on the few elements that usually means tell the people
the box scores and knotted the play by play action.
In science writing you use your metaphors and analogies to get
your audience to understand.

Put it in an analogy so that maybe they can understand it.
We had a question before the broadcast and it what from Chris
Copeland there in Michigan, she does a lot of advocacy work,
and she had said basically what you're doing is just translating
research information.

And that's right, it is a form of translation into plain English,
and she said is it a technical exercise just getting the who,
what, where, why into the document?

And, yes, it is.
You're getting your basic journalism w.'s, but then she also said
do you view it more subjectively?

Do you translate it word for word, phrase or phrase or do you
have to know the topic?

And what she was referring to is context and a lot of times
researchers are so narrowed into their particular study that
when they're trying to explain it to a general audience, they
don't mutt the context in.

And you need to have it be able to make sense, and sometimes
I view a pick research study as maybe a spice in a really
dynamite recipe.
It's not the whole recipe, but with everything else it makes it
come alive.
You have to put it into the bigger picture.
Quotes, see, that's something you don't usually see in a sk
scientific report, but if you get quotes and that's what always
drives a journalism story.
It's not just dry writing.

They get quotes from say the people involved, what other
people think about it from the researcher itself and I think that's
a big thing that's not really practiced now, but making an
emotional connection with your audience.
You have to almost tell a little bit about the researcher, himself
or herself, so that's a big thing, making the emotional
connection.

I could go on and on, but Jim, did you have something to say or
is there a question?

>> Jim: did i?
I didn't.

>> Cindy: those are just some basics of how you take that
information in a way you give it a little bit of life.
I still find in newsletters I'll get from organizations of all
different natures, people are still using citations.
You know, the little footnote thing on there.
There is no reason for that.
You need to kick those out.

If you're going to credit a source, just do so in the article text.
And you always have to restrain yourselves from technical
terms, that is going back to using everyday language.

>> Rachel: Can I jump in with a question that might be
connected to that.

>> Jim: sure.

>> Rachel: there is a question from a researcher about, you
know, if they do actually get their information into the media,
then what can be done to help change the attitude that research,
which is published in the public media, must have less
scientific rigor than peer-reviewed journals?

>> Jim: hmmm.

>> Rachel: that is a good question.

>> Jim: you know, that is a very interesting question because
the research -- and this is closer to Cindy's area, but my
experience with it has been is how popular it is versus how
good it is.

For example, if you -- a researcher came up with something
that would increase the length of your sex life or something,
probably would make it right to the pages.
If you came up with a new way to prevent ulcers, you wouldn't
make it to the front page.

I guess where you are with this is where we are about probably
15 years ago when we did the media watch, and what we were
trying to do at that time was to get reporters to portray people
with disabilities in a much improved light, and so when we
tried to do that, we got into the style book and there was one
term, handicapped and that applied to golfing.

There was nothing that was in the style books that the reporter
could even go to.

So therefore in colleges or on the job, they weren't trained.
So you would have something like the idiot with the gun whose
mentally retarded, shot somebody or something like that.
So we developed another set of guidelines that we have here
which are reporting guidelines that are different from the one
that is Cindy has, and we've distributed millions of those, and
keep updating them just so we can train the journalists, and
then we did a media watch with people with disabilities who
read the newspapers and watched the broadcasts, and if there
was a news caster that was portraying a person with a disability
in an unfavorable light, they came down on him -- first, they
provided the guidelines and then if he or her kept doing it, then
he got on them.

So my guess is that there is a similar approach here in that if
researchers are not following up with something in terms of the
rigor of the research or they're not reporting research that is
important, but not glamorous, that requires some kind of an
intervention or advocacy with reporters.

>> Rachel: okay sh and that actually leads into another
question, there are some questions about what all RIIL does,
and what kinds of activities do you guys do and what sort of
resources do you offer?

And people are interested whether they are people with
disabilities or researchers or the media.
So if you could describe a little the scope of the project.

>> Jim: okay, let's see if I can take a shot at that.
First of all, we have a division of labor between the Research
and Training Center on independent living at the University of
Kansas, and ILRU, that is a program of TIRR.

The webcast today is being brought through TIRR.

They have the transcripts of similar presentations provided, and
they also have discussion groups on topics that we're concerned
with that you can get on any time, and those are virtual time
versus the realtime that we have.

The arm that's at the University of Kansas has two functions:
one of them is a research and development function, and the
other is a database function.

Underneath research and development we've done things like
conduct the CCRM survey where we identified the research
priorities for information that you wanted.

We have the product called the No Way Guide that was
developed by Dr. Glenn Whyte and Dot Nary and that is how to
understand what research is, how it can work for you, and how
you can use the power of research.

That guide is underneath -- or that one is on its way out now if I
remember right.
And you can obtain that from us.

In addition do that, Cindy has three products and Cindy why
don't you describe those and then I'll finish up with the
database.

>> Dot: and I'd like to put something in, too, after Cindy.

>> Cindy: I think we have on the website is that effective and
efficient research translation for general audiences, it's about a
35 page document and it's right up there.

But it's written with all the footnotes and all that.
I've developed the more easier to understand and kind of walk
your way through it workbook which is condensing and
translating researchese for the general public.

What I spend most of my time on is the database and taking
scholarly articles or anything to do with independent living and
writing about a 350 or 500 word summary, but these
summaries are not about what you'll find in the article.
It's just the actual information and I rely a lot on numbers in
case people want to use it for grants.

I want to put dynamite quotes if you're using a brochure or
speech and I try to make all the information useful.

So it doesn't tell you what you'll find, it just tells you some of
the best stuff that's in there.
Those are the research summaries.
Jim...

>> Jim: well, I won't go onto dot which is about a specific
research project in a second, and something for which we really
need your information.

Just let me say a bit about the RIIL database again.
The RIIL has 950 studies that Cindy has written reviews for.
For the most part I don't think any of them are over a page long,
and all you need to do is to type in www.getrill.org, and the site
will come up and the very first thing you see is a set of key
words that you can search with, and you click on one and hit
and submit and you'll come up with a roster of studies and then
you can click on the ones you want to read and then you can go
back and read the others.

And we're finding that there are a variety of people who are
using this thing from people who have disabilities to people
who are improving services, to managers and policy makers,
and even researchers who want to use the reviews for their
reviews of literature.

So I encourage you to go into that site.
Also the web pages that are up that you were in when you
signed on will have that information available.

Now, I'd like to turn it over to Dot because there is a piece of
research that is being conducted that will and could well have
an impact on many of you that concerns how we might fully
participate in society.
So Dot, let me let you take it from there.

>>Dot: I'll be quick.
I just wanted to follow up on both what you and Cindy said.
I think one of the biggest features and benefits of RIIL is for
busy people in the field when they're writing a grant, when they
need to back up testimony, they can turn to RIIL and get
information that's readily available to back up their assertion.
That's a real good benefit for the people in the field.
When I was working in independent living I didn't have time to
bright a ten page research report.

I could read one or two pages that distilled the information and
that's a real benefit.
I want to talk a little bit about a project we're pursuing now.
We are looking at independent living and is it serving the needs
of everyone?

We know that it has huge benefits for anyone with a disability
or chronic health condition, but we want the make sure that it is
serving everyone, so we're doing a survey to assess
participation in independent living.

We want to know how well people are participating in the
communities, and we want to know about people with what we
consider more traditional disabilities versus those that are more
emerging such as chronic fatigue syndrome, asthma, and also
people from different cultural contexts and different ethnic
groups.

So we want to know and be able to compare levels of
participation.
We have an on line survey and we have paper surveys in
alternative formats.

So we're trying to reach everyone whether they have access to
the internet or not.
Here is the address of the on line survey, it's http: //rtc f. pi
l./org -- my e-mail address is much shorter.
Here it is.
It's [email protected]

We'll send you a copy of our latest edition of the guidelines.
If you're an organization that can help us get the word out, we
would appreciate that, just e-mail me and hopefully we can
really, no, come up with some information that will be helpful
to help people assess what ised advocacy agenda that's needed
and what are the issues that people are experiences as barriers
to full participation.
Thanks, Jim.

>> Jim: I suggest that's along e-mail or not --
>> Dot: can we post it?
Yes, I will ee send something in for the on line survey and if
you want other method I'll put my e-mail address up, too.

>> Laurel: what we can do, Jim, is when we archive this on
the contact page, we're going to add the contact information for
the RIIL project and for the RTC/IL, and Dot maybe we can get
the title from you and have the u. r. l. for that survey.

>> Dot: I'll give you a little blush, too, so people will know
what it is.

>> Rachel: I have another question which is somewhat
connected so let me throw it out and let me know if you want to
answer it now or if you want to hold off on it.
Sometimes consumers may not have research on their radar
screens.

So how can we as researchers help consumers better
understand the issue of research and its value for improving
their lives?

>> Cindy: Jim, I think that's the primer.

>> Jim: that is really the no way guide.
What Glen and his colleagues did when they developed that
was to take a piece of research and show all along the line how
the research was developed and how it could make an impact
on the lives of people with disabilities for whom the research
was being conducted, and as he was doing that, he was talking
about different research methods that were used because there
are various kinds of methods that can be used for different
kinds of purposes, and one of the things that we found was that
where some of this started was that when people with
disabilities would go in to be reviewers for grants, they would
go in with some pretty good ideas about what was needed, but
when they would talk about a research design or dissemination
of research, they didn't have an understanding of that.
So that was the reason for the No Way Guide.

>> Rachel: and all this is on your website which I can also
thisen there are links to with your website.

>> Jim: and if not we've got an e-mail and you can call us on
that one.
There is two volumes of that no way guide, and I think one of
them is out now and another in about six months.

>> Rachel: there is another question from researchers who
want to know -- this sort of goes back to some of your initial
comments about how really the biggest change in
dissemination has been because of the technology changes and
can you talk a little bit about the statistics of access to the
internet for people with disabilities?

>> Jim: I believe that the statistics to the access, and if I recall,
this was from John Westbrook's survey, but it was a staggering
amount like 75 or 80 percent of people with disabilities had
computer access.
I may be wrong on that.
Dot, do you recall that?

>> Dot: I think it was much higher than expected and it means
some people are going to the library.
I know here in town folks can drop in to the library at the
independent living center and log onto get their e-mail.
So even if they don't have it in their homes, a lot of people do
have access somewhere.

>> Jim: and one of the nice things at independent living
centers are doing is they are reconditioning computers or taking
computers in for donation and giving them to people with
disabilities and they find ways to pay for access to internet kind
of services, which was really surprising to us because we
thought that people with disabilities may be put in a position of
having to decide whether they wanted internet access or they
wanted to pay for the burden of cost of having the disability.

Like extra drugs or high cost of drugs or repairs of accessible
equipment or whatever.

>> Rachel: I just got a followup question from the person who
had earlier asked -- earlier asked the question and got the
hmmm from everybody so it's sort of a follow-up.

And she writes, I want my research to be perceived as credible.
Do I publish in a scientific journal or the media. The answer to
scientists is I publish in the journal.
Help me understand how we get information to the public in a
scientifically rigorous way.

>> Cindy: can I take that one, Jim?
I was looking for an opportunity to appraise Cindy Jones' work
that she's got over there at the accessible society and that is
another NIDRR funded project, and she takes research reports,
she writes them in a way that they're almost just ready right to
go into a newspaper or magazine and they're up at her website.
And she also lists the contact information.

So people you can call to get extra quotes from and I think
that's just been a really dynamite NIDRR project and if you
would want to access that, it's at www.accessiblesociety.org

>> Dot: and we can put that up on the contact info.

>> Cindy: part of the dissemination is finding the people that's
doing it write and just copying them and I think she's a really
great example.

>> Jim: also, I think what was being said here is that you don't
just have one audience.

Now, for researchers in the past that might be in a university
department or maybe part of a research and development
company or a company that just does research producing the
product and giving it to the person that's paying for it, or
publishing in a professional journal was enough.

And I believe today that consumers are asking for more.
They should be asking for more, and as a result of it, is that
researchers really have to think about multiple audiences and as
Cindy was saying before, how do you prepare the particular
product or announcement or information for that audience?
And if researchers need a little help with that, then it comes
back to all of us to be advocates and people who provide
technical assistance to help them out.

>> Cindy: I think no matter who you're writing the information
for, you should still go back to using every day language, I
think the media also that ties in with it, too, because common
every day language that anybody can understand is a form of
accessibility and I think that researchers -- disability
researchers should always keep that in mind.

>> Jim: that is really the important part.
For a number of years, the department of rehabilitation had a
publication called rehab brief and it was about a four sided
publication if I remember right and it had one or two studies on
there and it came up -- came in the mail and you picked it up
and here was a piece of research that you'd go through easily.

The only people who were benefitting from the complex
designs and -- and I'm not saying that that was wrong -- and the
terminology that was complex that was being used were the
researchers that were within the group.
And we still have to have that.

I mean, physicians have to have medical terms, but researchers
like physicians have to communicate that in simple language,
and the audiences, the number of people that are in the
audiences is much larger, I should say the number of people in
the audience that that information would be useful, is much
larger than that audience of researchers, and I'm not saying it's
not important to researchers, I'm just saying that there is a
greater audience that we have to communicate with.

>> Cindy: I just wanted to say that part of the RIIL project
does involve these webcasts, and I thought that it might be just
good, Laurel if you told us how effective you thought this
format was going.

>> Laurel: well, I think it's fabulous, but what's been
interesting is the ability -- no. 1, the eagerness of a lot of the
researchers to use this format.

We've had no turn downs and folks have been very eager to
communicate their research findings using this format.
I think so many of us have been accustomed to
teleconferencing, doing presentations on teleconferencing and
this is so similar that it's a comfort.

What we had hoped to achieve with this was to provide a low
cost means for people to connect like this without having to
have long distance calls.
Also, we believe that the archive, where each -- the audio and
then the transcript and the questions and then followed up by a
discussion forum for about a month period is a way to provide
this same information in virtual time.
So I think it's going well.
We'll have an evaluation that will tell us the real truth, but it
feels comfortable to me.

>> Cindy: and how many have you done to date?

>> Laurel: golly -- 20?
I don't know.

>> Cindy: I was just wondering, because some people were
asking me, is this something say if I'm an independent living
center say in Montana that I could do myself?

Is it that hard or do you have to have a lot of specialized
knowledge to set this up?

>> Laurel: I tell you, we have a colleague named Rob
Dickehuth who works with Baylor and he's like our technical
man and there is this box that he has which has lines coming in.
One is a telephone line that receives -- from the telephone as
we're speaking right now.

The other is a line that comes from our captioner's machine that
goes right into the same box.
That's Marie Bryant and for those of you who are watching
along and reading along, she's inputting our voices and our
words as we go along.

So it appears to me -- and then we have the server at Baylor
and there is things associated with it such as archiving costs
and so forth.

We've done estimates of the outside costs.
It's not terribly expensive, but the secret is the service provided
by Rob and Marie, and -- they're the make or breakers and if
they can't do it, we don't do it because that's the key.
It's got to be extremely good captioning, and it has to be this
marvelous device that Rob is able to do.

>> Jim: Cindy, I'd like to go back to you for a second again.
When you did the literature review, what were some of the
paramount findings and the research about communicating
information to nonresearchers?

>> Cindy: oh, gosh.
I think after I wrote it, you must always clearly show the
relevance.

So no matter who you're talking to, always show the relevance.
You have to always realize that -- I think somebody earlier had
said something about their organization and getting information
out.

If you establish your organization, you know, people know who
you are, then they're going to come to you and ask for
information.

And so that's a big thing is being viewed as a valid source of
information, and it kind of ties in with archives and databases.
Sometimes you don't want the information now and you
remember it and later on you go back to it.

Another thing is understanding how, you know, you have to
keep your preciseness of the scientific ab tract, but always give
it the allure and interest that people want.
And so those were just some findings throughout.

>> Jim: how many studies were in that review that you cited?
Do you have any idea?

>> Cindy: I'm glad I have it right here in my hand.
It's really tiny print, there is -- I don't know -- 75 or 100 pages
in this little tiny print.

And obviously what I said, a lot of it isn't necessarily new, but
it's all put together in one spot.
And then I'd always encourage people to go check out the
national center on disability dissemination research.

Their stuff has just been so impressive and something that I
like to always look at and I thought, yeah, I thought so.
And they validate it.
Are there any questions?
Because I think we're getting ready to close.

>> Rachel: you guys have answered a lot of the questions.
I guess there is one that stands out.
People want to know if RIIL has a connection to the media, and
if there is any way that you guys act as a conduit for
researchers?

>> Jim: no.

>> Cindy: I think that goes back to Cindy Jones' accessible
society.

>> Dot: yeah, I think you're right.

>> Cindy: I would encourage, if you go to the RIIL website,
my e-mail address is on there, and, you know, feel free to
continue asking me questions or advice or anything.
That's why I'm there.

>> Jim: actually, we're talking about two different projects
here that have different goals.

Cindy's project on accessible society was designed specifically
to get information to the media.

Ours was more along the lines of what can you do to repackage
research, to get people with backgrounds other than
researchers, to understand the research and what are the most
effective means to get the information out or make it available
on command to people when they want to access it.
So one of them is directed more at the media.

The other one is actually designed to be more dissemination
and utilization.

>> Cindy: and I also want to say about the RIIL database, just
to underline again, it is on independent living topics.
And that is part of information today.
It's the selectivity of it.

And so we're not trying to do everything in disability, but it's all
the things that do tie in with independent living of people with
disabilities.

>> Jim: housing, advocacy --

>> Cindy: we touch into a lot of areas in empower. , but we're
trying to sort of keep it there.

>> Laurel: of course it is such a broad topic, you've got
excellent resource materials on voc rehab, on health and
wellness, on things associated with mental health issues, I
mean, it really is a very, very broad database and first rate.
Cindy, with regard to -- two things: one is, can you tell us how
you obtained the documents that you abstract?

>> Cindy: that's a lot of foot work.
I'm pretty much cleaned out the University of Kansas library.
I've been to public libraries around.
I've gone to other cities to the college libraries.
A lot of this information is found in your university library.
That's why it's been inaccessible, and identify just found -- I
think we started the project a year and a half ago, two years
ago.

I watch any information that comes in here so it's a lot of foot
work, but it's been fascinating to me how many people are
putting information on the web and it's full reports.
And so I like to do that, pull down a whole full report, do a nice
summary, and then also in my abstract let the reader know
where they can access the full report.

>> Laurel: now, that's real important.

For these folks who are NIDRR projects, Research and
Training Centers, et cetera, if they have materials that they're
not sure if you've had a chance to abstract yet or that you've
captured, would it be useful for them to bring that to your
attention?

>> Cindy: Laurel, you know I've got a big smile on my face
when you said that. It makes my life so much easier when
people send me information.

If anybody sends information that has to do with independent
living, they can be pretty much sure that I'm going the take that
abstract and put it on our website which is a form of
dissemination for them, too.

>> Laurel: you're preparing a series of quarterly -- not exactly
annotated readings or remind me what that is, please.

>> Cindy: as the queen of fact sheets, myself, I find that when
we have these abstracts are about a specific study.
Once again, you know, research studies are just a point a
continuum.

What I thought would be easier might be nice for people is to
digest some of that information.

So I think in the recent magazine sci life, Laurel came up with
the idea that maybe I just look, say, at Managed Care.

So I used all of the abstracts on the RIIL website as my
parameter, and then I wrote just a small literature review.
What's going on with managed care and how that influences
people with disabilities.

And so we've done that -- I've got several of those fact sheets
and it's just a question of a couple of days before they'll be on
the RIIL website.

I'm not pretending to know everything about a certain subject,
but it's information that's on the RIIL website.

>> Laurel: so in terms of folks, if they send you materials and
you use them in these fact sheets, we'll probably be sending out
alerts, I guess, maybe through our e-mailing lists that this fact
sheet is now available or something along those lines so that
this whole issue of how do we get our product in front of the
target audience may be addressed in one small way in that
regard.

>> Cindy: yeah, Dot and Jim have been working a lot in that
area. Jim, had a have you got going on that?

>> Jim: I'm sorry, somebody just put their head in the door
here. What was the question again?

>> Dot: Cindy is asking about getting the fact sheets out and
what are we doing about that. Is that your question, Cindy?

>> Jim: yes, the web designer is currently developing a new
category, and of course the fact sheets are pulled from the RIIL
database, but they include a number of studies that will talk
about an issue and what are the topics of some of the issues,
Cindy?

>> Cindy: just your basic advocacy.

>> Dot: and they will be posted on our website of
>> Cindy: people with psych yacht particular disabilities and
homelessness and we're always trying to touch base with the
emerging populations in independent living.

>> Jim: and all of this stuff, whether it's in the RIIL database
or whether it will be in some of the products that we have or
these fact sheets, it's all printable.

Can you print it right out and use it and we encourage you to
read it and send it to your friends or whoever ought to be
reading it.

>> Cindy: so end us what you have.
We'd love it.

>> Laurel: now, with regard to Cindy, you mentioned that if
folks cared to pursue a conversation along these lines, they can
e-mail you.

I wanted to remind folks that we're establishing for about a
month or so following this webcast, a discussion forum, you
know, kind of like a bulletin board or news group or whatever,
where there can be an exchange of perspectives on this subject,
and we'll have some postsing.

We may even start with the answers to these questions.
So when you -- if you'd like to check back on this webcast
page, there will be a button you can click or an underline you
can click that takes you to the discussion forums, and there you
can participate if you care to. Jim, and Cindy, where are we
now?

>> Cindy: I think we're just about finished here, aren't we time
wise?

>> Jim: I don't have anything else unless there are anymore
questions.

>> Rachel: we have one more question which might be a little
bit of a repeat, but let me go ahead and throw it in.
What do you think of researcher advocacy materials that come
out in two versions? For instance, the original document and
one that's written for self-advocates? Shouldn't these purposes
be integrated from the start? And this came from an advocate.

>> Jim: I mean they hit it right on the head.
First of all, just in case we get cut off, I want to thank everyone
for some really -- some great questions.

As for the answer to that question, we resolved this problem
long ago, as I told you, by getting consumers involved and
developing a product, testing the product and disseminating.
For example, we have some checklists that personal -- that
people can use to advertise, employ and train their personal
assistants, and there was a good bit of research that was done
on that.

The final product of that that was available to people with
disabilities who wanted to manage their attendants, but the
research from that then became another product that was
published in a professional journal.
So this is not a matter of one or the other.

As far as we're concerned the important issue here is a product
that meets the need of a consumer or a service provider or a
manager or a policy make that's concerned with disability and
then research is a technical tool that we can use to prove that
what we have developed works, or to say what we have done is
the truth, and that can be published -- that information about
how we did that can be published in professional journals.
On the other hand, the product that was developed for the
advocate, they can be sure that when that is -- when they used
it, that if they use it the way we say to use it, that it's going to
be effective.

>> Cindy: and I think it's great that somebody cares enough to
be an advocate.

>> Jim: I do, too.
There was one great example.

We were trying to help people with disabilities and people at
independent living centers provide testimonies to city councils.
So that involved some pilot research where we went down and
looked at what was -- what were the major components of
making a presentation so that the city council would listen and
then we asked members of the city council if indeed these -- if
a person used these techniques, would they listen?
And so we found out what they would listen to.

Then we developed a training package and to find out if the
training package was effective, we used another form of
research that told us that the training package would, if it was
followed, would teach the advocates the kinds of skills that the
city council paid attention to.

So that's -- and then of course the product was made available
for people in the field and that was some years ago.
That product is still a popular product, but tom also published
the results of the research in the journal.

>> Laurel: perfect example.

>> Cindy: thanks to every one for listening in today.

>> Laurel: I want to thank Cindy, you and Jim and Dot for
leading us through this discussion.

I think you all out there can tell that we're fairly ardent about
the importance of really sort of like repackaging research
findings into a mode that those of us who are not researchers,
but care a lot about what research is being done that will help
us live higher quality of lives, this is important to us. And too,
we want to acknowledge NIDRR and its support for activities
such as this in which we are funded to promote the use of
research in independent living and to promote independent
living.

Finally, I want to thank the members of the ILRU team who
include Rachael Kosoy, Sharon Finney, Marj Gordon, Mark
Richards, Dawn Heinsohn and thank -- I think I've said enough
about our two outside helpers, Rob Dickehuth and Marie
Bryant, but in fact they are the best there is.

Meanwhile, we'll have another webcast coming up.

I invite you to come back and check our webcast page and see
what's upcoming, and please do participate in the discussion
forum that's going to be taking place.

And thank you very much for listening and good afternoon to
all of you.


Copyright ©2007

RIIL is supported by the RTCIL and was developed through a NIDRR grant.

Contact Cindy Higgins [email protected], [email protected] or original authors for comments and additional information.

The RIIL project was a joint development effort of the RTCIL at the University of Kansas and (ILRU) program of TIRR.