How Health Care Systems Can Begin to Address the Challenge of Limited Literacy
Michael K. Paasche-Orlow, MD, MA, MPH,1Dean Schillinger, MD,2Sarah M. Greene, MPH,3
Edward H. Wagner, MD, MPH3
1Section of General Internal Medicine, Department of Medicine, Boston University School of Medicine, Boston, MA, USA;
2UCSF Division of General Internal Medicine, San Francisco General Hospital, University of California, San Francisco, CA, USA;
3MacColl Institute for Healthcare Innovation, Center for Health Studies, Group Health Cooperative, Seattle, WA, USA.
KEY WORDS: health care systems; self-management; health literacy;
J GEN INTERN MED 2006; 21:884–887.
prevalent among the elderly, minorities, those with lower levels
of educational attainment, and those with chronic disease.1
The literacy and health literature calls attention to the ways in
which the current health care system is inadequate, not only
for the estimated 90 million U.S. adults with limited literacy,
but for most users of the system. The implications of limited
literacy should be understood as a challenge to the basic
justice of a health care system organized for the most highly
educated and powerful members of our society.
The National Institutes of Health have defined health
literacy as the ‘‘degree to which individuals have the capacity
to obtain, process and understand basic health information
and services needed to make appropriate health decisions.’’2,3
According to this definition, health literacy relates to both the
cognitive and functional skills a person has to make health-
related decisions. This definition is problematic from a number
of perspectives. While an individual’s health literacy is likely to
be associated with their literacy level, as suggested by the ar-
ticle by Fang et al.4in this issue, we believe that an individual’s
level of health literacy is not a fixed characteristic, and that it
should not be defined only via an evaluation of an individual’s
skills. Rather, health literacy reflects the contextual demands
placed on the individual by (a) their specific clinical condition
and associated health care decisions, (b) the communication
characteristics of the dominant medical culture, (c) the struc-
ture and function of clinical services that assume limitless
health literacy and require self-advocacy and vigilance, and (d)
the emphasis that society (fueled by a health consumer-ori-
ented marketplace) places on individual, rather than ecologi-
cal, determinants of health. As such, at a minimum, when we
conceptualize health literacy, we consider not only a patient’s
literacy and numeracy skills but also the complexity of the
tasks required, the accessibility of the health care workforce
for the target populations, the preparedness of this health care
workforce to engage productively with the patient, and the fea-
tures of the health care system and communities in which
care-giving and self-management support take place.
imited literacy has been shown to be associated with poor
health in a wide variety of settings, and is particularly
The Institute of Medicine has identified health literacy as
a national priority area for transforming health care quality.5
How will this occur? A fundamental reevaluation of health care
in America is warranted. The goal of this paper is to shift the
focus of inquiry and analysis from the patient to the system.
We offer 3 overarching principles to guide needed adaptations
to health care. Our suggestions reflect changes to the organ-
ization and delivery of health care based on an integration of
emerging research findings related to literacy and the Care
Model.6Such changes could ameliorate not only the health
effects of limited literacy, but improve the overall quality of U.S.
health care and engender a more ‘‘health literate’’ society.7,8
FIRST PRINCIPLE: PROMOTE PRODUCTIVE
Exercise Universal Precautions to Assure
Over 300 studies have demonstrated that most patient edu-
cation materials, explanations of health services and benefits,
and documents that purport to advance patients’ rights are
incomprehensible to a significant portion of the patients we
serve. However, in the current paradigm, limited literacy is
considered to be the exception to the rule. We advocate that a
process of confirming comprehension should be the standard
in clinical care, and a basic universal precaution embedded
into practice at multiple levels, using multiple methods. For
example, to confirm that patients understand their medication
regimens, clinicians should ask patients how they plan to take
their medications. If a patient does not understand, the clini-
cian can tailor teaching and reassess comprehension until the
patient has exhibited mastery (teach-to-goal). This iterative
‘‘teach-back’’ and ‘‘teach-to-goal’’ approach attends to a wide
range of factors (e.g., literacy, anxiety, culture, distracting
symptoms) that can influence a patient’s understanding, and
has been endorsed as a patient safety standard to improve
informed consent by the National Quality Forum.9While the
article by Fang et al.4in this issue raises serious questions as
to the extent of informed decision making for those with limited
literacy undergoing long-term anticoagulation with warfarin,
the article by Sudore et al.10illustrates the potential benefits of
embedding an iterative educational practice into decision-
making processes in health care.
Improve Providers’ Communication Capacities
Patients with limited literacy, when compared with those with
adequate literacy, more often report that their doctors use
words they do not understand, speak too fast, do not provide
None of the authors have any conflict of interest to declare.
Address correspondence and requests for reprints to Dr. Paasche-
Orlow: Section of General Internal Medicine, Department of Medicine,
Boston University School of Medicine, 91 East Concord Street, Suite-200,
Boston, MA 02118 (e-mail: email@example.com).
enough information about medical conditions, and fail to
make certain that they understand their health problems.11
Similarly, limited literacy has been associated with more dis-
trust of providers, pessimism about treatment, lower satisfac-
tion, and a worse assessment of the quality of care.12,13
Providers tend to be unaware of their patients’ limited litera-
cy,14,15but screening for limited literacy does not appear, in
and of itself, to facilitate successful communication.16To do
so, providers need to (1) learn a set of communication skills,
including how to convey empathy, promote trust, and encour-
age dialogue, how to elicit patient questions, and how to con-
firm comprehension and tailor education; (2) be imbued with a
set of attitudes that can foster productive relationships and
therapeutic alliances; and (3) be provided with system-level
supports, including time, tools, and incentives, that enable
them to utilize these skills. Given the growing racial, ethnic,
and linguistic diversity of patient populations, there is also
an urgent need to increase the diversity of the health care
workforce and to expand the responsibilities of mid-level
practitioners and community health workers.
Develop Communication Technology Platforms
and Implement Models to Promote Meaningful
Communication about complex ideas can be facilitated by
pictures, video, multimedia, and other decision aids.17–21
Technological support for patient education and collaborative
goal setting has begun to proliferate. However, to capitalize on
the potential role that such media have in engaging patients
with limited literacy, prototypes need to be developed and eval-
uated. Several promising interactive education technology
platforms that customize content according to the patient’s
responses and provide information to patients and providers
(e.g., automated phone systems, touch screens, and embodied
conversational agents) are emerging and are being tested in
clinical studies.22,23How to integrate these technologies into
clinical care to ensure broad reach remains a critical question.
SECOND PRINCIPLE: ADDRESS THE ORGANIZATION
OF HEALTH CARE
Make Patient-Centered Care a System Property
High-quality medical care integrates evidence-based clinical
care with a patient-centered orientation. A patient-centered
orientation for health care is one that: (1) includes preactiva-
tion to prepare patients and tailor appropriate messages; (2)
prioritizes collaborative goal-setting and relationship-centered
care during the visit; (3) delivers postvisit reinforcements and
follow-up services for both cognitive and behavioral outcomes;
(4) offers proactive surveillance during the intervisit period to
identify unanticipated changes in health trajectory or access
difficulties; and (5) broadens the array of available self-man-
agement support strategies. The systematic delivery of these
steps requires more than a motivated clinician; it requires a
redesigned care system as described by the Care Model.24A
growing body of literature suggests that tailored implementa-
tion of elements of the Care Model can disproportionately
benefit those with limited literacy25,26; however, only a very
small proportion of patients with limited literacy have access
to such programs.
Additional technological opportunities in areas such as
electronic messaging, internet-based personal health records,
and biometric sensing may be able to further advance patient-
centered care by providing opportunities for portable records
and bidirectional data. However, such efforts will remain tools
for the digerati unless the interface systems are simplified and
proven to be useful for both patients with limited literacy and
their providers, and usable in the actual care setting. Ulti-
mately, there should be many options for self-management
support, so that we move from a one-size-fits-all approach to
one that enables patients and providers to select which is best
for them. As described above, expanding the roles and respon-
sibilities of mid-level and community health workers can also
reap health dividends.
Streamline, Simplify, and Standardize
There is a tremendous need to simplify and standardize how
patients access and utilize the U.S. health system. This is rel-
evant across a range of processes including applications for
publicly financed health insurance, understanding of patients’
rights and end-of-life decision making, health-plan benefits,
pharmacy formularies, and self-management support re-
sources. Patients at every education level will benefit from a
reduction of paperwork, plain and simple communication, and
standardized processes. Satisfaction, comprehension, and re-
tention of information are enhanced for all patients when they
are presented with plain language materials. The current
financing structure of our health system and the increasing
focus on patient ‘‘choice’’ in health plans and benefits as a
means to control costs are likely to increase the complexity of
health care. Davis et al.27in the current issue, present alarm-
ing data regarding comprehension of the most common pre-
scription warning labels and, in their discussion, note the
absence of a standardized system of warning labels in the
Develop Structures, Incentives, and
Reinforcements to Meet Quality Targets for
In an editorial in this issue, Parker and Kindig28discuss the
ongoing need for research to advance the cause of patients
with limited health literacy. We agree. However, an important
reason for why many of the ideas listed above have not become
standard of care is that there are few financial incentives. Pro-
viders and systems should be rewarded for investing in tech-
nologies to support patient education and self-management,
and for engaging their patients in the use of these system sup-
ports. Currently, financial and time pressures act as disincen-
tives to some of the basic activities and structures needed for
patients with limited literacy. While there has been interest
among payers, purchasers, and policy makers in having
quality improvement driven by financial incentives, current
pay-for-performance contracts do not promote health literacy-
related processes, such as reducing rates of discrepancies in
medication regimens, promoting patient activation, or estab-
lishing collaborative behavioral action plans. Projects that
target quality indicators such as hemoglobin A1C testing have
not been shown to improve outcomes.29While the typical pay-
for-performance arrangement is for health providers to receive
bonuses for meeting or exceeding such targets, there is little
Paasche-Orlow et al., Transforming Health Care Systems
evidence that this leads to quality improvement and some
evidence to suggest that it directs resources to providers with
higher performance at baseline.30,31Given the concentration of
patients with limited literacy in underresourced, public sector
delivery systems, financial incentives need to be designed to
‘‘level the playing field’’ and promote the types of collaborative
health care teams and system redesign needed to address the
needs of vulnerable populations. One benefit of financial incen-
tives is that, regardless of the effect on quality, they do seem to
spur infrastructure investments.32However, to ensure that in-
frastructural improvements (e.g., registries or other information
technology help, self-management resources) can benefit those
with limited health literacy, resources, and incentives need to
be allocated specifically to health care settings that care for a
disproportionate share of vulnerable populations.
There is an urgent need to develop complementary quality
metrics that can serve as markers for health literacy-related
quality of care. Careful attention needs to ensure that measures
of patient experience, routinely used in performance assess-
ment, adequately capture the perspective of patients with lim-
ited literacy. For example, the Consumer Assessment of Health
Providers and Systems (CAHPS) is typically administered as a
mailed survey, and the contribution of limited literacy to re-
sponse bias has not been evaluated.33Current efforts on the
part of the Joint Commission and the National Quality Forum to
integrate the issue of literacy in their safety and quality initia-
tives provide hopeful harbingers of needed attention.9,34
THIRD PRINCIPLE: EMBRACE A COMMUNITY-LEVEL,
Develop Intervention Models that Acknowledge
the Multilevel Nature Of Vulnerability
Most researchers have attempted to isolate the independent
effects of limited literacy on health care quality. Based on such
work, several have suggested pathways by which limited
health literacy may lead to worse outcomes.35–40While logical
from a biomedical perspective, this reductionism does not ac-
knowledge the mutuality of various biopsychosocial, econom-
ic, environmental, and cultural factors influencing health and
health care for those with limited literacy. In the current issue,
Sentell and Halpin41provide evidence that limited literacy
contributes to racial and ethnic health disparities. Vulnerabil-
ities such as limited literacy often coexist and interact with
other social vulnerabilities, at both the individual and com-
munity level, and successful intervention efforts often need to
attend to an array of influences on peoples’ lives. In another
project reported in this issue, Weiss et al.42referred patients
with depression and limited literacy to a community-based
adult literacy program and demonstrated that adult basic
education is an effective adjuvant therapy to depression care.
These studies provide examples of the interrelationships
between social vulnerabilities, with important implications
for the design of future interventions.
Advocate for, and Develop More Robust,
Independent, and Trusted Public Health
Current ‘‘independent’’ sources of health information include
the doctor or office staff, health plan, family and friends, and
government agencies. However, a broad array of ‘‘non-inde-
pendent,’’ far-reaching, and often competing health commu-
nication channels now exist, including coverage of health
issues in the mass media, direct-to-consumer prescription
drug advertising, health consumer industry advertising, inter-
net sources, and entertainment television, often in the form of
health-related ‘‘reality’’ programming. These channels are in-
creasingly influencing the public’s awareness of health issues,
redefining what is health and illness, shaping consumers’ ex-
pectations of health and their demands on the health care sys-
tem, and narrowing public opinion regarding the attribution of
and solutions to common health problems to the level of the
individual. While the social marketing techniques used by the
private sector are extremely effective in influencing public
opinion and creating demand for services, there is evidence
that such messages may have disproportionate uptake among
those with lower educational attainment.43It is apparent that,
in the midst of this cacophony of voices, there is an urgent
need to develop effective, reliable, and objective voices for
health communication messages that can be delivered at
home, at work, at school, and in the community.
The growing literacy and health literature calls attention to the
ways in which the U.S. health care system is inadequate and
even unjust, not only for the estimated 90 million U.S. adults
with limited literacy, but for many other users of the system.
We have presented 3 overarching principles for health system
transformation that focus on promoting productive interac-
tions between patients and providers, reorganizing health care
delivery, and embracing a community level and ecological
perspective. We believe that instituting such changes could
improve the quality of care not only for patients with limited
literacy, but for all health care consumers, and could contri-
bute to the development of a more ‘‘health literate’’ society.
Dr. Schillinger was supported by NIH Clinical Scientist Award
1. DeWalt DA, Berkman ND, Sheridan S, Lohr KN, Pignone MP. Literacy
and health outcomes: a systematic review of the literature. J Gen Intern
2. Understanding and promoting health literacy (R01) PAR-04-116. Avail-
able at: http://grants2.nih.gov/grants/guide/pa-files/PAR-04-116.html.
Accessed April 7, 2005.
3. Ratzan SC, Parker RM. Introduction. In: Selden CR, Zorn M, Ratzan SC,
Parker RM, eds. National Library of Medicine Current Bibliographies in
Medicine: Health Literacy. Available at: http://www.nlm.nih.gov/pubs/
cbm/hliteracy.html. Accessed May 9, 2006. Vol. NLM Pub. No. CBM
2000-1. Bethesda, MD: National Institutes of Health, U.S. Department of
Health and Human Services; 2000.
4. Fang MC, Machtinger EL, Wang F, Schillinger D. Health literacy
and anticoagulation-related outcomes among patients taking warfarin.
J Gen Intern Med. 2006;21:841–6.
5. Adams K, Corrigan JM.Institute of Medicine. Priority Areas for
National Action: Transforming Health Care Quality. Committee on
Identifying Priority Areas for Quality Improvement. Washington, DC:
National Academies Press; 2003.
6. Improving chronic illness care: A National Program of the Robert Wood
Johnson Foundation. Available at: http://www.improvingchroniccare.
org/. Accessed May 9, 2006.
7. Wagner EH. Chronic disease management: what will it take to improve
care for chronic illness? Eff Clin Pract. 1998;1:2–4.
Paasche-Orlow et al., Transforming Health Care Systems
8. Wagner EH, Austin BT, Davis C, Hindmarsh M, Schaefer J, Bonomi A.
Improving chronic illness care: translating evidence into action. Health
Aff (Millwood). 2001;20:64–78.
9. Improving patient safety through informed consent for patients with lim-
ited health literacy: an implementation report. National Quality Forum.
10. Sudore RL, Landefeld CS, Williams B, Barnes D, Lindquist KS, Schil-
linger D. Use of a modified informed consent process among vulnerable
patients: a descriptive study. J Gen Intern Med. 2006;21:867–73.
11. Schillinger D, Bindman A, Wang F, Stewart A, Piette J. Functional
health literacy and the quality of physician-patient communication
among diabetes patients. Patient Educ Couns. 2004;52:315–23.
12. Kalichman SC, Rompa D. Functional health literacy is associated with
health status and health-related knowledge in people living with HIV-
AIDS. J Acquir Immune Defic Syndr. 2000;25:337–44.
13. Mancuso CA, Rincon M. Asthma patients’ assessments of health care
and medical decision making: the role of health literacy. J Asthma.
14. Bass PF, Wilson JF, Griffith CH, Barnett DR. Residents’ ability
to identify patients with poor literacy skills. Acad Med. 2002;77:
15. Lindau ST, Tomori C, Lyons T, Langseth L, Bennett CL, Garcia P. The
association of health literacy with cervical cancer prevention knowledge
and health behaviors in a multiethnic cohort of women. Am J Obstet
16. Seligman H, Wang F, Palacios J, Wilson C, Daher C, Schillinger D.
Physician notification of their diabetes patients with limited health
literacy: a randomized, controlled trial. J Gen Intern Med. 2005;
17. Houts PS, Doak CC, Doak LG, Loscalzo MJ. The role of pictures in
improving health communication: a review of research on attention,
comprehension, recall, and adherence. Patient Educ Couns. 2006;
18. Wofford JL, Smith ED, Miller DP. The multimedia computer for office-
based patient education: a systematic review. Patient Educ Couns.
19. Krishna S, Balas EA, Boren SA, Maglaveras N. Patient acceptance of
educational voice messages: a review of controlled clinical studies. Meth-
ods Inf Med. 2002;41:360–9.
20. O’Connor AM, Stacey D, Rovner D, et al. Decision aids for people
facing health treatment or screening decisions. Cochrane Database Syst
Rev. 2001; CD001431.
21. Lewis D. Computer-based approaches to patient education: a review of
the literature. J Am Med Inform Assoc. 1999;6:272–82.
22. Friedman RH, Stollerman J, Rozenblyum L, et al. A telecommunica-
tions system to manage patients with chronic disease. Medinfo.
23. Bickmore T, Giorgino T. Health dialog systems for patients and con-
sumers. J Biomed Inform. 2006 (in press).
24. Wagner EH, Bennett SM, Austin BT, Greene SM, Schaefer JK, Von-
korff M. Finding common ground: patient-centeredness and evidence-
based chronic illness care. J Altern Complement Med. 2005;11(suppl 1):
25. DeWalt DA, Pignone M, Malone R, et al. Development and pilot testing
of a disease management program for low literacy patients with heart
failure. Patient Educ Couns. 2004;55:78–86.
26. Rothman R, Malone R, Bryant B, Horlen C, DeWalt D, Pignone M. The
relationship between literacy and glycemic control in a diabetes disease-
management program. Diabetes Educ. 2004;30:263–73.
27. Davis TC, Wolf MS, Bass, PF III, et al. Low literacy impairs compre-
hension of prescription drug warning labels. J Gen Intern Med.
28. Parker RM, Kindig DA. Beyond the IOM health literacy report: are the
recommendations being taken seriously? J Gen Intern Med. 2006;
29. O’Connor PJ, Desai J, Solberg LI, et al. Randomized trial of quality
improvement intervention to improve diabetes care in primary care
settings. Diabetes Care. 2005;28:1890–7.
30. Rosenthal MB, Frank RG, Li Z, Epstein AM. Early experience with pay-
for-performance: from concept to practice. JAMA. 2005;294:1788–93.
31. Rosenthal MB, Frank RG. What is the empirical basis for paying for
quality in health care? Med Care Res Rev. 2006;63:135–57.
32. Casalino L, Gillies RR, Shortell SM, et al. External incentives, infor-
mation technology, and organized processes to improve health care
quality for patients with chronic diseases. JAMA. 2003;289:434–41.
33. Castle NG, Brown J, Hepner KA, Hays RD. Review of the literature on
survey instruments used to collect data on hospital patients’ perceptions
of care. Health Serv Res. 2005;40:1996–2017.
34. Health Literacy and Patient Safety. Joint Commission on Accredita-
tion of Healthcare Organizations. Available at: http://www.jointcommis-
sion.org/PublicPolicy/health_literacy.htm. Accessed May 9, 2006.
35. Baker DW. Reading between the lines: deciphering the connections
between literacy and health. J Gen Intern Med. 1999;14:315–7.
36. Pignone M, DeWalt D, Sheridan S, Berkman ND, Lohr KN. Interven-
tions to improve health outcomes for patients with low literacy: a
systematic review. J Gen Intern Med. 2005;20.
37. Roter D. Health literacy and the patient-provider relationship. In:
Schwartzberg JG, VanGeest JB, Wang CC, eds. Understanding Health
Literacy: Implications for Medicine and Public Health. American Medical
Association Press; 2005:87–100.
38. Rudd RR, Renzulli D, Pereira A, Daltroy L. Literacy demands in health
care settings: the patient perspective. In: Schwartzberg JG, VanGeest JB,
Wang CC, eds. Understanding Health Literacy: Implications for Medicine
and Public Health. American Medical Association Press; 2005:69–84.
39. Schillinger D, Chen AH. Literacy and language: disentangling measures
of access, utilization, and quality. J Gen Intern Med. 2004;19:288–90.
40. Rootman I, Ronson B. Literacy and health research in Canada: where
have we been and where should we go? Can J Public Health. 2005;
41. Sentell TL, Halpin HA. Importance of adult literacy in understanding
health disparities. J Gen Intern Med. 2006;21:862–6.
42. Weiss BD, Francis L, Senf JH, Heist K, Hargraves R. Literacy educa-
tion as treatment for depression in patients with limited literacy and
43. Nutbeam D. Health literacy as a public health goal: a challenge for
contemporary health education and communication strategies into the
21st century. Health Promot Int. 2000;15:259–67.
trial.J Gen InternMed.
Paasche-Orlow et al., Transforming Health Care Systems