Open the Door

Open The Door:

To Better Health Literacy for People of All Ages

Proposal and Request for Funding

Phoebe Del Boccio

June 21, 2009

Executive Summary

This proposal has been developed to address the pressing need to create a unified approach to the understanding, evaluation, and treatment of the issue of health literacy in our communities, particularly in our most at-risk and underfunded populations. The approach developed by the OPEN THE DOOR (OTD) Health Literacy Initiative has been carefully tailored to include patient needs, healthcare worker training and community involvement.

The partners identified as being a vital part of the project range the spectrum from educators, health science professionals, business and community leaders, and trained volunteers, all of whom are needed to produce an effective program that will be able to serve the needs of any community, with only minor adaptations in method and testing services.

Health literacy is a growing problem, affecting as many as 1 in 3 U.S. adults, and is recognized as a priority issue by all major regulatory and research agencies. It affects critical aspects of livesand of the community in which individuals live and work, from the physical aspect, to the financial and labor costs of ill health. Most importantly, studies have shown that people with higher levels of health literacy are not only healthier but alsohappier than people with low levels of literacy. The promotion of health and happiness are important factors towards the development of the optimism and the resiliency needed to unify and help a community grow to its fullest potential.

In the preparation of this proposal, I have carefully studied many programs and initiatives that have already been created and have developed the OTD program to provide a creative solution that will effect real change in improving health literacy. The proposal will begin with a description of the extent of the problem and will provide a detailed multi-directional approach to address the needs of the patient, the needs of the health providers, and the needs of the community. The proposal will demonstrate how all areas can benefit from the OTD solution to improving health care literacy in all patient populations, regardless of age, gender, language, religion, or culture. Thus, the OTD program will be applicable to patients across all social and economic backgrounds.

Table of Contents
Executive Summary / …………………………………………………………. / 2
Table of Contents / …………………………………………………………. / 3
The Background / …………………………………………………………. / 3-4
Mission Statement / …………………………………………………………. / 5-6
Literature Review / …………………………………………………………. / 6-9
The Objectives / …………………………………………………………. / 9
The Plan / …………………………………………………………. / 10
The Assessment / …………………………………………………………. / 11-13
The Personnel / …………………………………………………………. / 13-15
The Budget / …………………………………………………………. / 15-18
The Time Line / …………………………………………………………. / 19
The Conclusion / …………………………………………………………. / 20
Works Cited / …………………………………………………………. / 21-22
Supporting Materials
(Copy of Budget & Resume) / …………………………………………………………. / 23-26

OPEN THE DOOR:To Better Health Literacy for People of All Ages

By Providing Health Communications Programs to Underfunded Communities and At-Risk Populations

Introduction

A community-focused organization called “OPEN THE DOOR: To Better Health Literacy for People of All Ages”(OTD) has been designed to increase and support overall health and to improve the health literacy rates of targeted communities. The organizational type is based on a model for a non-profit association that will use salaried and volunteer employees who have experience in the areas of health sciences, social sciences, and computer sciences. OTDwill seek to establish its first working partnership with the Bergen Volunteer Medical Initiative, a volunteer force of health care professionals who provide free services to low-income residents of Hackensack, New Jersey and the surrounding Bergen County area. The OTD organization will work with volunteers and professionals who come from a variety of backgrounds, including health care professionals, students and educators, business and accounting professionals, non-profit organizations,civic leaders and community volunteers.

The Background

According to the American Medical Association Council of Scientific Affairs, functional health literacy is defined as “the ability to read and comprehend prescription bottles, appointment reminders, and other essential health related materials that allow for successful patient functioning” (AMA Council of Scientific Affairs).The United States Department of Health and Human Services, the parent organization of the NIH funding agency, recognizes a broader definition of health literacy that places the burden of improving health literacy on the shoulders of health care providers to improve greater patient understanding of clinical issues, address disease prevention training and to teach patients how to better navigate the health care system. The OTD foundation will be developed based on the DHHS model of health literacy, using a multi-layered approach to achieve the goal of improving health literacy in each center and community in which the program is enacted. The task of achieving health literacy in the United States presents a unique challenge due to the diversity of our citizen population as compared to other parts of the world, a fact that is particularly true in the northern New Jersey metropolitan area. Therefore, the goal of the OTD program will be to provide a viable and creative approach to reducing health literacy that can serve as a template for the application to any community in the United States.

Mission Statement

The primary mission statement of OTD is to create better health through greatercomprehension, exemplified by the use of the slogan “Let the jargon be gone.” The concept for the OTD program was developed to provide solutions to very serious problems that we are presently facing in health care communities throughout our state and across our nation. The developers of the OTD program believe that a lack of health literacy understanding is a critically important issue facing today’s health care consumers, second in importance only to the issue of providing affordable health care for all consumers. Health literacy is particularly important to the more vulnerable members of our community, those who are underinsured, disabled, and underemployed. People who live on a fixed income and those who have chronic health issues suffer greater risk of health problems when they also suffer from a lack of general fundamental literacy.

Individuals and families who are compromised in their understanding of information pertaining to their health care treatment are placed at increased risk for both the development and under-treatment of many acute and chronic disease conditions.The OTD program will be advanced to provide health literacy assessment and health improvement tracking in multiple categories of health care in cooperation with the MD’s, NP’s, APN’s and Directors who run the community health centers. In a comprehensive study commissioned by the Department of Health and Human Services, (Agency for Healthcare Research and Quality) researchers evaluated several sectors of health conditions, and the researchers found a positive, significant relationship between literacy levels and participants' knowledge of many health issues, including: smoking, contraception, human immunodeficiency virus (HIV), hypertension, diabetes, asthma and postoperative care.

There is a firm consensus among many health care regulatory and research organizations that the issue of health literacy must be addressed due to the multiple ways health literacy affects the health care community. The DHHS has issued the “HealthierUS and Healthy People 2010 Initiative”to encourage research on theories, concepts and interventions related to health literacy (Agency for Healthcare Research and Quality). The Joint Commission, the largest of the healthcare accreditation groups in the United States, supports a HealthCare and Patient Safety Initiative that centers around the issue of health literacy, due to the fact that communication problems are the primary cause of over 3,000 types of sentinel, or life-threatening, categories of events that have been reported to the Joint Commission (Public Policy).

The National Institutes of Health supports research and development in the areas of disease prevention, the management of chronic conditions, provision of patient based health care, addressing cultural competence and health disparities and the promotion of healthy living(NIH). In support of the NIH goals, the OTDorganization will offer services that include, but are not limited to, the NIH guidelines listed above.

Problem Statement

A lack of functional health literacy is a serious impediment to achieving good health status in children and adults. Individuals who are deficient in health literacy have poorer compliance, greater incidences of uncontrolled chronic diseases, and increased health care costs. A recent report by the Agency for Healthcare Research and Quality on health literacy concluded that "low reading skills and poor health are clearly related” (Safeer).

Literature Review

According to statistics presented by the National Assessment of Adult Literacy Survey, the problems associated with poor health literacy indicate the following troubling information;

• 66% of U.S. adults over the age of 60 have inadequate or marginal literacy skills.
• 75 % of Americans who suffer from prolonged illnesses of six months or more have limited

literacy.

• Health literacy levels are independently associated with impaired glucose control in

diabetics.

• Even after adjusting for health insurance coverage and socioeconomic status, people with

inadequate literacy levels are twice as likely to be hospitalized as those with adequate

literacy skills (National).

Research by the American Academy of Family Physicians has shown health literacy to be a systemic problem in many communities and to seriously impact the ability of physicians to provide adequate health care (Safeer).

Low health literacy impacts health negatively throughout the health care continuum. In a study involving assessments of adult literacy in America, it was estimated that 1 out of 3American adults cannot read above a 5th grade level (Mayer).

The National Assessment of Adult Literacy Foundation describes literacy ability in four categories and their studies indicate approximately 1 in approximately 3 U.S. adults function at a minimal level of literacy ability of basic to below basic, defined as follows:below basic, defined as no more than the most simple and concrete literacy skills, basic, defined as able toperform simple and everyday literacy activities, intermediate, or the ability to perform moderately challenging literacy activities, and proficient, defined as having the ability to perform complex and challenging literacy activities.

Source: NAAL Statistics (National)

Figure 1: Adult Literacy

Current research shows thatchronic health conditions affect at least 90 million American adults (Mayer);therefore, it is easy to see how low literacy levels can create dangerous, life-threatening situations that are ripe for the risk of serious errors to occur, especially for more vulnerable citizens who live in underfunded or at-risk communities across the country.

Another related study involving 74 English speaking patients and 38 physicians at San Francisco General Hospital showed that patients recall less than half of the information physicians convey to them during hospital visits (Schillinger).

Validity testing involving the use of the TOFHLA, (Test for Functional Health Literacy in Adults), the WRAT-R, (Wide-Range Achievement Test-Revised) and the REALM (Rapid Estimate of Adult Literacy in Medicine showed good correlation between the three testing methods during adult health literacy testing, (Parker) and these tests gave a good indication ofthe multiple layered problems associated with low health literacy scores. For example, only 52 % of the English speaking patients were able to complete 80% of the questions correctly. 37% of patients did not understand instructions to take medications on an empty stomach and 48% of patients were unable to determine that they were eligible for free health care (Parker).

A good example of the difficulties faced by the average patient in obtaining understandable health care information was shown by a study published in the Journal of General Internal Medicine regarding one of thebasic Patient Bill of Rights, a document designed to outline a patient’s plan of treatment care. The researchers found that a patient needed an average of two years in college to understand the document. Further, the results showed that:

• Statutes in 23 states and at 240 hospitals required an average of two years of college to read and understand.
• The documents also tended to be presented only in English and they covered an average of only seven of the 12 health care issues presented by the AHA. (Health)

Additional problems with health literacy occur on a routine basis in non-English speaking health consumers that can create serious adverse events. A study conducted by Northwestern University shows how even our basic ways of presenting health care information can be seriously flawed. The study, which measured the ability of pharmacies to provide health care information in Spanish, found that 21% of the 764 pharmacies surveyed offered no translation services at all, and 44% offered only very minimal prescription and other health information Spanish translation (Paul).

To underscore the seriousness of the issue of health literacy, during Research conducted of 3,260 Medicare beneficiaries in several cities in the United States over a six year period from 1997 to 2003, the researchers found that the subjects who tested with initial levels of inadequate health literacy scores were 52 percent more likely to have died by the end of the study. The National Academy on an Aging Society estimates that poor health literacy cost the United States more than $73 billion on an annual basis, due to extended medical treatment, improper compliance and health care errors (Robbins).

The Objectives

The primary goal of the OTD program is to support local communities by offering an evaluation service and training program to address the specific health care needs and literacy levels of patients and staff. members. OTD plans include providing on-going education and support for improving the health literacy goals of local health care organizations. OTD will offer services such as individualized literacy testing for patients and literacy sensitivity training forstaff in order to create a base ofunderstanding for the importance of health literacy. OTD will use evaluative testing as a cornerstone of the health literacy program. Tests will be given during the pre and post phases program participation and will include examinations of learning gain by the clients in matters of health literacy, interviews of random clients to assess their ability to apply health information to their daily lives, interviews of all family members to measure changes in health status, and the delivery of an annual report that provides both qualitative and quantitative findings.

A recent study by Harvard School of Public Health showed that electronic medical records are woefully underused in U.S. hospitals, with the 63 % of hospitals responding to the survey; only 1.5% of hospitals use a comprehensive electronic records system (Ashish). However, further studies have indicated an increased rate of compliance with health issues for patients using electronic sign-in health diaries, with those patients’ compliance rates presenting at 94% versus an actual compliance rate of 32% for patients using paper diaries (Stone). OTD will provide comprehensive health literacy testing modules for patient evaluationthat will be conducted by qualified care-givers. This testing analysis will include a comprehensive assessment of the tools needed by the medical clinics to help achieve greater levels of comprehension on health matters for each patient.

The Plan

OTD will focus on forming partnerships with existing volunteer agencies and health clinics and supporting community medical professionals by providing literacy services to increase the health care knowledge of community members. The OTD program will establish solid working relationships with health professionals (MD’s, DDS’s, APN’s, NP, and Clinic Managers) to create individual and family focused health diaries and action plansthat will be targeted to the particular needs of the client(s), depending on the results of the initial patient literacy testing. Special emphasis will be placed on areas of disease- specific causes and prevention, disease-specific management and treatment options and will also include a patient evaluation of exercise, diet, and nutritional information needs.

OTD will join with local book distributors and health content providers to channel health educational materials to client organizations. Further, the OTD program will provide electronic health information updates and create media support for health agencies, in the form of website development, brochures, pamphlets, health videos and other needed media forums, all for the purpose of creating greater awareness of health issues and services available in the community. OTD also plans to provide personalized financial budgeting advice as part of its services, which will be geared towards maximizing the client’s health care dollars. These programs would act to identify discount generic drug programs, teach patients how to access free services such as public service energy-saving advice services, and work with local merchants to provide communal discounts for OTD program participants.

Finally, an important facet of the OTD program will bedeveloped to recruit and train student volunteers from undergraduate and graduate institutions to evaluate center-specific needs for thebest types of health literacy tools that would be most useful in each community. Students who demonstrate proficiency during the initial training program with OTD will be invited to participate in an advanced training program that will design center-specific training programs geared towards maximizing overall health literacy in the community.

The Assessment

The client list for this program will be targeted towards individuals and families who live in situations where they are placed at increased risk due to a lack of affordable care, and who exhibit lower levels of health literacy than the average members of the community.

These can include members who are at or near the Federal Poverty limits, members who are uninsured or underinsured, members who have inadequate access to materials in their primary language, members who are impaired in functional literacy assessments, members who have difficulty hearing or seeing, or members of the community who wish to increase their understanding of a particular health issue or concern but lack access to materials and tools that would allow them to do so.