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January 2009

Signature Story - Reading, Writing and Rx

Featuring The Medical Library Association

By Matt Alderton

Kerri Morrone Sparling was diagnosed with Type 1 diabetes when she was 7 years old, just before starting the second grade. What she remembers most is giving a urine sample behind a door that read, "If you sprinkle when you tinkle, please be neat and wipe the seat." It was funny.

The months and memories that followed, however, weren't so funny. "I remember going to the hospital for two 12-day stays," says Sparling, who is now a health blogger, editor and diabetes awareness advocate. "I remember the doctors drawing blood while I cried. I also remember practicing insulin injections on an orange, but how different the needle felt when it went into me. I remember trying to wrap my head around what the doctors told my parents: ‘She will be OK, but everything has changed.'"

While most other second graders were still learning to read storybooks, Sparling was learning to read something else entirely—her body. Now 29 years old, she's spent most of her life memorizing words and phrases like insulin to carbohydrate ratio, sensitivity factor and autoimmune , and their real-world applications — and implications. "Without a clear understanding of the causes and effects of diabetes, both on a physiological and emotional level, I can't ever be at peace with this disease," she says.

A full-time patient, Sparling is an expert on her condition, able to fluently converse with doctors about her treatment, and even challenge them when necessary. Most patients aren't so lucky, according to Carla Funk, CAE, executive director of the Chicago-based Medical Library Association, a 4,000-member association of health sciences librarians that has been working with health care providers for more than a century in order to improve access to health care information.

As part of an effort to engage and educate patients, the MLA recently completed the pilot for its Health Information Literacy Research Project, the purpose of which was to develop a curriculum for training doctors and nurses on the importance of consumer health education.

According to Funk, it's all about empowering patients like Sparling. Many don't speak English, she says. Some lack education. Most are anxious and scared. And some are simply misinformed, having culled critical information from unreliable Internet sources. The consequence is a lack of basic understanding about their health that clouds consumers' ability to make informed decisions about treatment options, communicate effectively with their health care providers and follow through on doctors' instructions.

"We call it health information literacy," Funk says. "It's knowing how to find and understand good health information so that you can take a role in your own health care. It's being able to find quality health information, being able to understand what you're looking at and being able to use that information to make informed health care decisions."

Diagnosis: Health Illiteracy

In the United States, approximately 77 million adults—36 percent of the nation's adult population—have "basic" or "below basic" health literacy skills, according to the 2003 National Assessment of Adult Literacy, the results of which were released in 2006. Sponsored by the National Center for Education Statistics, it revealed that only 12 percent of the U.S. population has "proficient" skills, which means that a majority of Americans struggle to read and understand prescription drug labels, health information resources, doctor's instructions, health insurance forms, medical bills and even appointment slips.

Equally staggering is the number of people who search for health care information online—and blindly trust it. According to a 2006 survey of nearly 3,000 American adults conducted by the Pew Internet & American Life Project, 113 million adults—or 80 percent of American Internet users—have searched for health information online, most using general purpose search engines. Of those, just 15 percent report "always" checking the source and date of the health information they find online. That means approximately 85 million Americans read health information online without consistently evaluating its quality.

For these reasons and others, MLA decided in 2002 that it needed to embrace health information literacy as a major association platform. Although the responsibility of educating patients falls primarily on the shoulders of health care providers, librarians are stewards of information, according to Funk, and therefore ideally suited to help consumers access, evaluate and use reliable health information. "That's what librarians do," she says. "We develop and find resources to help people."

Those resources save money and lives, suggests a 2008 survey of health care organizations conducted by the Washington, D.C.-based eHealth Initiative. It studied the exchange of health information between physicians, hospitals, health plans and patients and found that 69 percent of respondents say such exchanges allow them to either decrease dollars spent on redundant tests; reduce the number of patient admissions to hospitals for medication errors, allergies or interactions; decrease the cost of care for chronically ill patients; or reduce staff time spent on administration. Meanwhile, 52 percent of respondents report that health information exchanges enable them to achieve a decrease in prescribing errors, improved access to test results, improved compliance with chronic care and prevention guidelines, better care outcomes for patients, increased recognition of disease outbreaks, or improved quality of practice life.

"The literature shows that having good health information makes a difference in somebody's health," says MLA President Mary Ryan, library director at the University of Arkansas for Medical Sciences. "That's an indication that we need to have health information literacy as an important role within our association."

Opening the Book on Health Information Literacy

Although the positive impact of information on consumer health is obvious, medical libraries—many of which are located inside hospitals and on college campuses—have traditionally served only health care providers and professionals. However, when former MLA President Linda Watson decided during her 2002 term that she wanted to make health literacy a major priority for the association, she proposed that MLA members also begin engaging patients and the general public. At the time, she was a volunteer with the Literacy Volunteers of America; working one night a week teaching an adult student to read, she saw a significant opportunity to grow the association.

"As part of my tutoring of the student that I had been assigned to, I would often bring in medical information and use that for practice," says Watson, now director of health sciences libraries at the University of Minnesota Twin Cities. "It became clear to me that the combination of basic literacy—or lack thereof—and the complexity of health concepts for ordinary people was a really big problem."

Anxious to expand her reach beyond one student, Watson appointed a 12-member Health Information Literacy Task Force to define MLA's role in the health information literacy movement, and to articulate that role to consumers as well as industry stakeholders.

"As librarians, it's no surprise that we value reading and literacy," Watson says. "But then to be able to combine that with our love for medical librarianship and health information, it just seemed like a natural match."

MLA's Health Information Literacy Task Force was formed in fall 2002 and officially began work in January 2003, engaging in monthly conference calls for a period of two years in order to define MLA's health information literacy mission. When the task force concluded its work in April 2005, it emerged having addressed seven key objectives:

1. Develop a working definition of "health information literacy." MLA defined "health information literacy" in 2005 as the set of abilities needed to: recognize a health information need; identify likely information sources and use them to retrieve relevant information; assess the quality of the information and its applicability to a specific situation; and analyze, understand and use the information to make good health decisions.
2. Identify current and potential MLA activities that support health information literacy. Among other things, the Health Information Literacy Task Force during its two-year tenure created a dedicated health information literacy section on the MLA Web site, compiled and distributed lists of trusted health information resources and Web sites, created a consumer health library directory, authored a User's Guide to Finding and Evaluating Health Information on the Web , and created a DVD and a bookmark highlighting the association's health information literacy efforts.
3. Identify potential partners. As part of its initial health information literacy efforts, MLA established strategic partnerships with the American Library Association, the Pfizer Foundation's Partnership for Clear Health Communications, the U.S. National Commission on Libraries and Information Science, the National Network of Libraries of Medicine and the National Library of Medicine.
4. Recommend an MLA structure to coordinate activities. Upon completing its work, the Health Information Literacy Task Force bequeathed leadership of MLA's health information literacy efforts to the association's pre-existing consumer health group, the Consumer and Patient Health Information Section. Additionally, the task force worked with MLA's Continuing Education Committee to establish for librarians a Consumer Health Information Specialization certification, as well as a series of topical continuing education courses offered online and in person at MLA national and regional meetings.
5. Identify questions and research opportunities. Prior to dissolving in 2005, the Health Information Literacy Task Force surveyed MLA members to determine their comfort with and involvement in health information literacy issues, and to measure their awareness of the association's efforts. Approximately 87 percent of survey respondents said MLA should be involved in promoting health information literacy resources.
6. Develop a communication plan. A subcommittee of the Health Information Literacy Task Force developed a communications toolkit for MLA members to help them market the role of information and librarians in promoting health literacy. It included communications goals, target audiences and key talking points.
7. Develop a framework for evaluating the effectiveness of MLA's health information literacy work. The Health Information Literacy Task Force found in its member survey that approximately 58 percent of MLA members were aware of the task force's existence. In order to evaluate awareness of ongoing efforts, it recommended monitoring traffic on relevant areas of the MLA Web site to determine member response to new and existing health information literacy resources.

Lost—and Found—in Translation

Although its Health Information Literacy Task Force represented and initiated a formal effort by MLA to pursue health information literacy platforms and projects, the association had flirted with health literacy long before Watson issued her 2002 call to action. In fact, in 1998—in the midst of celebrating its centennial year—MLA debuted a consumer health brochure designed to help patients get more involved in their own health care. The brochure, Deciphering Medspeak, contained more than 100 medical definitions and a list of prescription shorthand terms.

"We published the brochure trying to promote the value of our members," Funk says. "Prior to that, for the first time we hired a PR firm; we'd never had one before and we were looking around for ideas for giving back to the community. So, we came up with the Deciphering Medspeak idea."

The brochure was a hit, not only with librarians, but also with doctors and patients. It was so popular that in 2002—as the association began exploring and embracing its larger health information literacy initiative—MLA released a Spanish language translation. It followed that in 2006 and 2007 with a series of six disease-specific Medspeak brochures—on HIV and AIDS, strokes, heart disease, breast cancer, diabetes and eye disease—designed to help patients navigate their illnesses with easy-to-understand definitions and resources.

"We've now expanded the brochures further," Funk says. "We realized that they were written basically between a 7th and a 12th grade reading level, and that's too high. So, we've gone back and we're now translating them into plain language; now they'll be at about a 6th grade reading level."

Distributed for free via MLA's Web site and meetings, and sold in bulk at cost to medical libraries, public libraries, hospitals and doctor's offices, MLA's Medspeak brochures have been so well received that they even appeared as props on a recent episode of Fox's medical drama House .

"The brochures have been extremely effective," Funk says. "An association works on behalf of its membership, and what we did to get our membership better known was actually to start working on behalf of the consumer as well. That was a break for us."

Spreading the Word

According to Ryan, that break was a good one, as it enabled MLA members to raise their own profile in pursuit of successful health literacy outreach. Because if people don't know that medical libraries exist—and most don't, she says—they won't solicit them for information and assistance.

"Just getting people's attention is a major roadblock," Ryan says. "We have tried with different initiatives to help our members find ways to promote their services to health care providers as well as to the public, but health professionals don't always think to refer their patients to a library."

In an effort to change that, past MLA President Jean Shipman initiated in 2006 the MLA Health Information Literacy Research Project, made possible by a $250,000 grant from the National Library of Medicine in Washington, D.C.

"We wanted to help hospital librarians understand how to train health care providers about the importance of health information literacy," says Shipman, who is director of the Spencer S. Eccles Health Sciences Library at the University of Utah.

In April 2006, Shipman and her colleagues submitted to the National Library of Medicine an unsolicited grant application proposing the development of a health information literacy curriculum that would enable medical librarians to educate health care providers about health literacy issues. The application was approved and MLA received funding in September 2006 for a two-year pilot project through which to develop and test their proposed curriculum.

"What we did first was a survey to get a baseline understanding of the perceived value of consumer health and health literacy in hospital settings by health care administrators and providers," Shipman says. "Then we took that survey and created a basic module for hospital librarians to use to train health care providers."

Once the training module was developed—approximately an hour long, it includes basic information about health information literacy and its impact, as well as training resources, tools and scripts—MLA needed libraries to test it.

"We selected nine pilot sites," Shipman says, "and required them to train at least 50 health care providers in their institution."

Librarians from MLA's pilot sites convened in Indianapolis in April 2008 for a special two-day training session, when they learned the parameters of the project and discussed strategies for executing it. Among them was Medical Librarian Andrea Harrow from Good Samaritan Hospital in Los Angeles, who was anxious to open her library for the first time to patients and families. "The project came along at just the time that I was thinking, ‘We really need to open up the library to consumers,'" she says.

Although MLA's pilot libraries targeted a variety of health care providers, Harrow found an especially eager audience among nurses, who at her hospital were in need of resources for communicating with a large population of Korean patients. "Nurses are kind of hungry for tools," Harrow says. "So, I've been going around the hospital to different nursing stations and seeing if they would be interested in resources and materials."

Upon completing the MLA Health Information Literacy Project pilot in September 2008, pilot libraries had trained more than 900 health care providers in health information literacy issues, according to Shipman. "We've done follow-up surveys with those providers to see if they've made changes in their practice," she says. "Fifty-six percent ‘strongly agreed' that the training session increased their knowledge of health literacy and its impact on patient care. Thirty percent ‘agreed.'" What's more, Shipman adds, when asked what they'd do differently as a result of the MLA training, most physicians indicated that they'd begin referring patients to recommended Web sites, and many said they'd being referring patients to libraries.

The Next Chapter

Having completed the Health Information Literacy Project pilot, MLA has published its training module online for download by librarians, and is currently evaluating pilot results. Next, it plans to produce a self-guided, Web-based module for health care providers. The missing piece, however, is still patients themselves.

"The main stumbling block with the project has been how to really reach out and get consumers in," Harrow says. "Most people don't realize that there is a library in most hospitals."

Engaging health care providers is a good start toward engaging patients, according to Shipman. It's not enough, however, which is why the next item on MLA's health information literacy to-do list is: Build consumer awareness.

"A lot more health care decisions are being forced to the consumer level," Shipman says. "That requires a more educated patient than ever. Our health care system has gotten so complex, and we see ourselves as navigators."

Because successful navigation requires reliable reference points, MLA has committed itself to pursuing a research agenda that will help the association more effectively target and execute its health information literacy initiatives. "That's the next step in this whole process," Ryan says. "We really need to evaluate better whether our services are effective or not. A person's health information is very personal, however, so that's a very, very difficult thing to do. Also, it's hard to measure the effect of information; if you get information to quit smoking, when do you see the benefits of that information?"

Although MLA has yet to collect definitive data, Funk insists she's seen plenty of results—and plenty of success. "We have been successful among our membership in heightening awareness of this issue and defining the librarian's role in health literacy," she says. "The number of our CE courses in this area have more than doubled over the past few years and are some of the first to fill up. The number of articles published in our journal about health information literacy more than tripled in 2007 over 2002—a year before we started the health information literacy initiative. Our health literacy Web pages receive among the most hits and are always listed in the top 100 pages on our site. More librarians outside of our specialty, particularly public librarians, have gotten a consumer health specialization from MLA. We have sold almost 75,000 Medspeak brochures, which doesn't include the numbers that we have given away at regional meetings and to individuals. So, I think we have been successful."

For patients like Sparling, that success spells survival. "This is my life, my body, and I only get one go at this," she says. "I can only achieve good health by being an educated, involved patient."

Matt Alderton is a Chicago-based freelance writer. He may be reached at matt@logolepsy.com.

SIDEBARS

Health Information Literacy By the Numbers

According to research compiled by the U.S. Office of Disease Prevention and Health Promotion, individuals with low health literacy skills are more likely to:

• Skip important preventative measures, such as mammograms.
• Have chronic conditions, and be less able to manage them effectively.
• Be hospitalized with preventable and emergency conditions.
• Report their health as poor.
• Incur high health care costs.

Source: U.S. Department of Health and Human Services

An Information Prescription

In order to increase awareness of health information resources—including hospital libraries—among both doctors and patients, MLA recently partnered with the National Library of Medicine to test the idea of a "health information prescription."

As part of the pilot for its Health Information Literacy Project, MLA asked participating hospital libraries to distribute customized prescription pads that physicians could use to "prescribe" information for their patients. In addition to medication, doctors could use the pads to recommend specific Web sites and libraries to their patients.

"Librarians gave prescription pads to health professionals in their institutions and asked them to prescribe the library to their patients as part of the instructions they get when they leave the doctor's office," says MLA President Mary Ryan. "The message was: Take these drugs, get this filled and then take this prescription to your library and learn more about this topic so that you can make better decisions about your treatment."

What Is Health Information Literacy?

Health Literacy is …

• The ability to read, understand and act on health information.
• The degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions.

Information Literacy is …

• A set of abilities enabling individuals to "recognize when information is needed and have the ability to locate, evaluate and use effectively the needed information."

Health Information Literacy is …

• The set of abilities needed to: recognize a health information need; identify likely information sources and use them to retrieve relevant information; assess the quality of the information and its applicability to a specific situation; and analyze, understand and use the information to make good health decisions.

Source: Medical Library Association