Tobacco Access Portal Project
Tobacco Control in Rural America
American Legacy Foundation Publication
CASE STUDY 5:
University of Maine: Tobacco Access Portal
Dismantling Literacy Barriers to
Tobacco Information
Program Overview
Maine leads the states in tobacco control funding, but smoking rates remain at
crisis levels for certain segments of the population, raising the concern that
tobacco cessation information is not trickling down to its residents effectively
or equally.79 Data show that 17.5 percent of Maine women smoke while pregnant.
Of those, 83.3 percent receive MaineCare or Medicaid assistance.80 Maine also
has a high number of residents with disabilities—a population both more likely
to use tobacco and less likely to quit.81 Twice as many Mainers earning less
than $25,000 use tobacco compared to residents who earn over $50,000, and three
times as many of those with a high school degree use tobacco compared to those
with a college degree.82 For people with literacy barriers, reading a text on
the web - a dynamic multimedia platform - is more difficult than reading a text
in printed materials.
Because reading is further complicated on the Internet, those with reading
challenges are at greater risk of prolonged tobacco use and its consequences, as
they are not able to access important information on cessation techniques.83
Alarming statistics such as these encouraged Drs. Stephen Gilson and Liz DePoy
to apply for a grant from Legacy. Gilson and DePoy are co-directors of the
Prevention Center of Excellence located in the Center for Community Inclusion
and Disability Studies (CCIDS) at the University of Maine and have built
considerable capacity for improving health information access for diverse
populations. The original idea came from their intent to develop a web-based
tool that renders text from tobacco information websites into readable
information for mostly rural Mainers with limited literacy and English
proficiency. When they tested the top ten Google search results found by using
the key words “quit smoking,” they found only one—the Centers for Disease
Control and Prevention website— that met basic accessibility guidelines.
“Maine is a poor rural state. It’s a border state, where many people speak
Acadian French as their first language. Low literacy here in a rural area is an
issue for different reasons than it is in, say, New York, where an immigrant
might come to the city and never learn to speak English. That’s different than
if you never went to school or you went to a one-room schoolhouse, which is
still the case here in a lot of places.” ~
Liz DePoy, Developer and Researcher, University of Maine Tobacco Access Portal
The idea for the prototype Tobacco Access Portal (TAP) was born from DePoy’s
personal experience, when she became sick with encephalitis and had temporarily
lost her eyesight. “Walking into the doctor’s office and not being able to read
anything,” she says, led to her interest in developing tools for people with
limited access to print information. While TAP addresses visual challenges, it
also includes 47 percent of American adults who have trouble reading English in
the dynamic and often distracting web-based format.84,
85
While taking into account that individuals access and comprehend information in
a variety of ways, Gilson and DePoy aimed to build a bridge to tobacco cessation
information for those who do not use the web in standardized ways. “It’s
ludicrous,” DePoy says. “The people who need the information the most—those who
tend to be lower in literacy— can’t access it. From a human rights perspective
it just makes perfect sense that something should be written at a literacy level
that can be both read and orally rendered.”
Building the Portal Word by Word
Software like Babel Fish86 is designed to translate blocks of text from one
language to another, but a web portal capable of distilling and simplifying
language to a literacy level below its original had not been developed until the
University of Maine created the TAP project. Existing tools such as English
language “parsers” and “thesauruses” work toward this aim, but no existing
software could filter a health-based website to be readable to a low-literacy
population. A particular challenge is that many topical areas, such as tobacco
control, have specialized lexicons that do not lend themselves to easy
translation.
Initially, the process was a labor-intensive, line-by-line, word-by-word
tinkering with the language. Gilson and DePoy worked with a handful of graduate
students who developed a matrix to check and double-check each word as the
portal was being built and improved. “What do you do when the title of a website
says ‘smoking cessation’?” asked Gilson. “We had to develop a program that
differentiated between formal names and text describing quitting smoking.” The
process uncovered kinks in their software that produced problematic translations
of some phrases. For instance, “people with special needs” became “special
people” in an early iteration of the portal.
The current version of TAP translates the six major tobacco prevention sites
serving the state of Maine. “This has never been a project with the intention of
doing an ‘I gotcha’ against the designers of these websites,” Gilson says. “We
just flipped our brains and started thinking differently. Web authors and
designers didn’t write those sites to exclude people.”
A local journalist interviewed Gilson and DePoy soon after they received the
Legacy grant. The journalist went and pulled up those six sites and told them he
couldn’t see how the information was difficult to understand. “He was reading
through a lens of someone with a master’s degree, and those words seemed common
to him,” Gilson says. It is easy for most members of the population to take
their basic literacy for granted.
“We thought that low literacy was low literacy. It never dawned on us that there
would be differences in the nature of literacy even at the same level. If
somebody speaks English as a second language but is very literate in his/her
first language, that was a very different picture than someone who never learned
to read in the first place.” ~
Liz DePoy, Developer and Researcher, University of Maine Tobacco Access Portal
Accounting for a Low-Literacy Population That Is
Not Homogeneous
In the rural communities of Maine, low literacy takes many forms. Roughly 25% of
Mainers are of French or French-Canadian ancestry.87 This population grows up
speaking “Franglais,” much like the residents of the U.S.¬Mexico border are
fluent in “Spanglish.” The Chinese immigrant population is on the rise in Maine,
particularly in and around Bangor, as is the Spanish-speaking population in the
agricultural areas.88 Gilson and DePoy had not anticipated their tool becoming
useful for the English-as-a-second-language (ESL) population until they entered
the testing phase.
“That was a big ‘a-ha’ for us that we hadn’t considered,” DePoy says. “So we
began looking at the differences between what people want from a website, how
they read it, and ultimately how they can learn from it. We really had to look
at the multiple explanations of why they don’t read well and what that means for
the development of a web portal.” In other words, the conceptualization and
learning process for an immigrant highly educated in his or her native language
may be quite different from that of a “Franglais” speaker or a high school
dropout.
“It would be a dream come true if this could be an overlay for any sort of
website. It’s really easy to see the potential of making the Internet
accessible. We see people all the time who simply can’t understand the health
information that many of us take for granted, and it’s clear that low literacy
translates into low health.” ~Mary Lyon, Executive Director, Literacy Volunteers of Bangor
Testing the Portal and Building Creative Partnerships
Gilson and DePoy had a TAP testing site in place through the Literacy Volunteers
of Bangor (LVB) even before they submitted their grant application. LVB’s goal
is to reduce the disparity of access to social, economic, and educational
resources for adults with identifiable low literacy skills. Mary Lyon, the LVB
executive director, and her staff serve roughly 200 people every year, mostly
within a 25-mile radius of Bangor. The population served at LVB is roughly
40-percent native English speakers and 60-percent ESL.
Gilson and DePoy arranged for a testing group of 20 at LVB to receive stipends
for their participation and also donated a set of PCs to the center for ongoing
assistance. “Our students would have done it even without the stipends, because
they are all so appreciative of what we do,” Lyon says. “It is a forgotten
population, and this helps to remove barriers and level the playing field.” The
testing process helped Gilson and DePoy polish the portal by honing in on some
language that remained difficult or unfamiliar and moved the prototype to a
level where it could be unveiled.
At the time of this publication, the Maine Adult Education Association has
developed a growing interest in implementing the portal for a wider audience.
After a presentation at the American Public Health Association annual conference
in 2008, immigrant service providers in New York have expressed interest. “This
has sparked something for us,” Gilson says. “We had originally conceived of this
as a tool for folks with some sort of diagnostic circumstance for why they are
not reading, people who are in rural areas with problematic access, or for
people who had schooling curtailed.”
Looking Forward with a Sustainable Initiative
Gilson and DePoy are now looking to broaden the geographic reach of their
innovative tool. They are developing a version that will filter the tobacco
education sites in any state. “We started with Maine as a framework to figure
out the issues in development of this portal,” Gilson says. “Now we’re ready to
have it work anywhere. Whether you’re urban or rural, in North Carolina,
Wyoming, or Los Angeles, you’ll be able to plug in a cessation site and have it
do the translation. I am really excited about this next phase that will allow us
to extend beyond the boundaries of Maine.”
Gilson and DePoy see a paradigm shift on the horizon. As the chair-elect of the
Disability Section of the American Public Health Association, Gilson feels that
the conversation around web-based information access is gaining traction. “That
is part of how policy thinking takes place,” Gilson says. “It gets on people’s
radar, and they begin looking at it and thinking differently.”
Lessons Learned
-
Maine's adult smoking rate
and literacy rate made it an ideal testing ground for the Tobacco Access
Portal
-
Those who can least
understand text-based health information are often the ones who most need
it.
-
A tool like TAP requires many
rounds of patient, diligent revision to distill language and simplify
specialized language wile retaining accuracy.
-
Vast differences in the
nature of literacy exist (even at the same level), and must be accounted
for: regional dialects, ESL populations, and differences of conceptual
ability.
-
The TAP model could be
widely applied to improve literacy access for a range of sites across
geographic boundaries.
-
Innovative projects require
creative partnerships.
Endnotes:
79 Diana Bowser
and Paul Campbell, “Influencing State Policy on Tobacco Settlement:The
Experience in Maine.” [Augusta, ME: Maine Center for Public Health, 2005].
80
Department of Health and Human Services, Maine, 2005 Pregnancy Risk
Assessment System,
http://www.maine.gov/dhhs/bohodr/tables2005/smoke during05.htm [accessed June
26, 2009].
81 Partnership for Tobacco-Free Maine, Fact Sheet, “Disabled,”
http://www.tobaccofreemaine.org/explore_facts/documents/Disabled.pdf [accessed
June 26, 2009].
82
Partnership for Tobacco-Free Maine, Fact Sheet,
“Low Socio-Economic Status,” http://www.
tobaccofreemaine.org/explore_facts/documents/
LowSES_001.pdf [accessed June 26, 2009].
83 Elizabeth
DePoy and Stephen Gilson, “Universal Web Access,” The International Journal
of Technology, Knowledge & Society, Vol. 1, 2005/2006.
84 Institute of
Medicine (2004) Speaking of Health: Assessing Health Communication
Strategies for Diverse Populations [Washington, DC: National Academic Press,
2002].
85
Stephen Gilson and Elizabeth DePoy, (2006) “Explanatory Legitimacy: A Theory
of Diversity Applied to Disability,” in Encyclopedia of Disability, ed. Gary L.
Albrecht [Thousand Oaks, CA: Sage Publications Inc. 2006].
86 Yahoo! Babel Fish,
http://babelfish.yahoo.com/.
87 U.S. Census Bureau,
“Selected Social Characteristics: Maine”, http://factfinder.census.gov/home/saff/main.html?_
lang=en&_ts= [accessed June 22, 2009].
Download the entire American Legacy Foundation publication, Tobacco Control in
Rural America
here.
