The Other Side of the Coin:

Attributes of a Health LiterateHealth care Organ izalion

byDean Schillinger, M.D. 1

Debra Keller, M.D., M.P.H.

Commissioned by the Institute of MedicineRoundtable on Health Literacy

'Division of General Internal Medicine and Health Communications Program, Center for Vulnerable Populations,

Department of Medicine at San Francisco General Hospital, University of California San Francisco, San Francisco,

CA

tDivision of General Internal Medicine, Department of Medicine at San Francisco General Hospital, University ofCaliforrria San Francisco, San Francisco, CA

The Other Side of the Coin:Attributes of a Health Literate Healthcare Organization

Dean Schillinger, M.D.1Debra Keller, M.D., MPHZ

l. Division of General Internal Medicine and Health Communications Program, Center for Vulnelable Populations, Department ofMedicine at San Francisco General Hospital, Univetsity ofCalifornia San Francisco, San Francisco, CA

2. Division of General Internal Medicine, Department of Medicìne at Sân Frâncisco General Hospital, Univelsity of California San

Francisco, San Fr'ancisco, CA

INTRODUCTION

Background

Health literacy has been defined as "the degree to which individuals have thecapacity to obtain, process, and understand basic health information and servicesneeded to make appropriate health decisions."flnstitute of Medicine 2004) HealthIiteracy encompasses a range of skills that individuals need to function effectively ina complex and demanding healthcare environment. These incÌude limitations inliteracy skills [reading and writing), oral skills flistening and speakingJ, numericalcalculation and quantitative interpretation skills [numeracy) and, increasingly,internet navigation skills. Nearly 90 million adults in the United States have limitedhealth literacy. While limited health literacy affects individuals across the entirespectrum of socio-demographic characteristics, it disproportionally affects morevulnerable populations, including the elderly, disabled individuals, people withlower socioeconomic status, ethnic minorities, those with limited Englishproficiency, and people with limited education [National Center for EducationStatistics 2006). Some of these sub-groups are precisely the populations that havethe potential to benefit the most from the implementation of the Patient Protectionand Affordable Care Act [ACA), especially if health literacy barriers are attendedto[Martin and Parker 201,1).

Compared to individuals with adequate health literacy, individuals with limitedhealth literacy have been shown to have greater difficulty in communicating withclinicians (schillinger et al, 2004), are less likely to participate in shared decision-making [Sarkar et al, 2011), and face greater barriers in managing chronic illnesses

[Cavanaugh et al. 2008; Williams et al. 1998), Furthermore, limited health literacyappears to be a barrier to access to care, receipt of preventive and self-managementsupport services, and safe medication management [Sarkar et al. 2008; Sarkar et al,

201,'J,; Sudore et al. 2006). Compared to populations with adequate health literacy,populations with limited health literacy have been shown to have worse self-reported health (Baker et al.I997J, higher rates of many chronic conditions (Sudore

et al. 2006J, worse quality of life and intermediate markers of health in somechronic conditions [schillinger et al, 2002), experience serious medication errors

[Schillinger et al. 2005), and have increased risk of hospitalization (Baker et al.

2002) and mortality (sudore et al. 2006). Compared to patients with adequatehealth literacy, patients with limited health literacy exhibit patterns of utilization ofcare reflecting a greater degree of unmet needs, such as excess emergency roomvisits and hospitalizations, even when comorbid conditions and health insurancestatus are held constant [Hardie et aL 201.1). It has been estimated that limitedhealth literacy leads to excess health expenditures of greater than $100 billionannually (Vernon et al.2007). Improving limited health literacy has been identifiedas a key strategy to improve the safety, quality and valuè of health care fNationalQuality Forum March 2009; The Joint Commission200T).

Rationale for this Paper

The vast majorify of research on health literacy has focused on characterizingpatients' deficits, how best to measure a patient's health literacy, and on clarifyingrelationships between a patient's limited health literacy and health outcomes. Inaddition, most health literacy intervention research has studied how to intervenewith patients who have limited health literacy.

There is a growing appreciation, however, that health literacy is a dynamic state thatrepresents the balance [or imbalance) between [a) an individua]'s capacities tocomprehend and apply health-related knowledge to health-related decisions and toacquire health related skills and [b) the health literacy-related demands and

attributes of the healthcare system. There is a clear need to develop, in parallel, a

set of strategies that health care organizations can develop and implement to enable

patients and families to optimally access and benefit from the range of health care

services and to successfully interact with the range of health care entities involvedin contemporary health care. Government entities, public policy organizations, tradeorganizations, and research funders, such as the Surgeon General's Office [TheSurgeon General September 7,2006), the American Medical AssociationFoundation[American Medical Association 0ctober 2007,May 2007), the f ointCommission [The Joint Commission 2007),America's Health Insurance Plans

(America's Health Insurance Plans), the Department of Health and Human Services

IUS Department of Hea]th and Human Services Office of Disease Prevention and

Health Promotion 2010), the Agency for Healthcare Research and Quality, and

National Institutes of Health have emphasized the need to address system-levelfactors that place undue health literacy demands on all patients utilizing thehealthcare system.

There is perhaps no more critical time than now to shift focus from the health

literacy skills of patients to the health literacy-promoting attributes of health care

organizations. Enactment of the Patient Protection and Affordable Care Act (ACAJ

[111th Congress March 23,2010) provides opportunities to improve the experience

of care and the health outcomes for limited health literacy populations throughinsurance reform, Medicaid expansion and the establishment of health insurance

exchanges. Maximizing this opportunity will require that health care organizationsattend to the communication needs of limited health literacy populations. The

success of a number of ACA-related redesign initiatives, such as Patient Centered

Medical Homes IPCMH) and Accountable Care Organizations (ACOsJ will depend on

the stewardship of healthcare organizations committed to prioritizing the needs oflimited health literacy populations flnstitute of Medicine 2011), The expectedbenefits of insurance expansion will depend on individuals' ability to navigate the

complexities of the insurance exchange;without special assistance and institutionalcommitments, many individuals may not fully benefit from the new system [Martinand Parker 20L1; Sommers and Epstein 2010), In addition, through the HealthInformation Technology for Economic and Clinical Health Act (HITECH Act)

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legislation created to stimulate the adoption of electronic health records and

supportive technology healthcare providers are being offered financial incentivesfor demonstrating meaningful use of electronic health records (EHR), includingsharing detailed health information with patients electronically. Whether thebenefits of health IT will accrue for patients with the greatest needs forcommunication support will depend on the uptake of health IT among populationswith limited health literacy, This, in turn, will depend on the extent of investmentsmade to tailor products to the needs of these populations and the health systems

that disproportionately care for them,

This paper attempts to identify and describe a set of goals or attributes that diversehealth care organizations can aspire to so as to mitigate the negative consequences

of limited health literacy and improve access, quality, safety and value of healthcareservices, We describe organizations that have committed to improving and re-engineering to better accommodate the communication needs of populations withlimited health literacy as "health literate healthcare organizations", reinforcing thenotion that the healthcare sector shares significant responsibility in promotinghealth literacy flnstitute of Medicine2004).

As a foundational principle, health literate healthcare organizations make clear and

effective patient communication a priority across all levels of the organization and

across all communication channels. These organizations recognize that healthliteracy skills are highly variable among the populations they serve, and that manyof their systems are poorly designed to accommodate Iimited health literacy skills.They also recognize that literacy, language and culture are intertwined and, as such,

their health literacy efforts complement and augment effort to improve theirorganization's linguistic and cultural competence and capacities. These

organizations also recognize that clinician-patient miscommunication is verycommon and apply a "universal precautions" approach to communication, wherebycommunication is simplified to the greatest extent possible and comprehension isnot assumed to be achieved unless it can be demonstrated. "Universal precautions"represents a public health approach to communication that attempts to ensureeffective basic communication for the largest proportion of the population at thelowest cost. Health literate healthcare organizations, however, also pay particularattention to ensuring that patient skill-building efforts reach the populations mostin need by making special investments, and recognize that special system re-design

efforts may be needed to further reduce health literacy demands so as to better"match" the health literacy demands of the healthcare system with the skills of sub-

populations so as to mitigate the untoward effect of an individual's limited healthliteracy skills on their health. A health literate healthcare organization that openlyacknowledges the centrality of clear and interactive communication and invests inoptimizing communication for more vulnerable populations can realize benefits forpatient access, satisfaction, quality and safety; can reduce unnecessary patientsuffering and costs; can enhance healthcare provider well-being; and can improveits risk management profile, Finally, a health literate health care organization

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recognizes the centrality of inter-professional communication as an importantmeans to reduce the informational demands on patients, especially duringtransitions in care.

The most proximate goals of these organizational investments are to maximize theextent of patients' and families' capacities to [a) comprehend and engage inrecommended preventive health behaviors and receive preventive healthcareservices ifdesired; (b) recognize changes in health states that require attention andaccess healthcare services accordingly; (c) develop meaningful, ongoingrelationships with health care providers based on open communication and trust;

[d) obtain timely and accurate diagnoses for both acute and chronic healthconditions; (e) comprehend the meaning of their illness, their options for treatment,and anticipated health outcomes; (fJ build and refine the skills needed to safely andeffectively manage their conditions at home and communicate with the healthcareteam when illness trajectory changes; (g) report their communication needs orcomprehension gaps; (h) make informed healthcare decisions that reflect theirvalues and wishes; (i) effectively navigate transitions in care. In addition, theseinvestments can enable peopÌe to make more appropriate health care coveragechoices based on their personal or family's health needs, better comprehend therange of benefits and services available to them and how to access them, and be

more aware of the financial implications of their health care choices so as toimprove decision-making.

The list of attributes and aspirational goals for health literate healthcareorganizations included in this paper is by no means exhaustive, and simplyrepresents our attempt to synthesize a body of knowledge and practice supported tothe greatest extent possible by the state of the science in the young field of healthliteracy. The attributes and aspirational goals that we outline are most well-developed for and clearly applicable to organizations that provide direct care topatients. However, a majority are also relevant to the broader range oforganizations and institutions that comprise the modern health care system, such as

health insurers and health plans, pharmacies, pharmacy benefits managers, diseasemanagement companies, and vendors of health IT and patient education products.We see this paper less as the definitive response to the challenge of defining a

"health literate health care organization", and more as an attempt to advance a

vision of how organizations should evolve to be more responsive to the needs ofpopulations with limited health literacy in tangible ways, thereby improving care forall.

ATTRIBUTES AND ASPIRATIONAL GOALS FOR HEALTH LITERATEHEALTH CARE ORGANIZATIONS

When making communication an organizational priority, health literate healthcareorganizations embrace a package of central principles and practices with respect to

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organizational structures, processes, personnel and technologies for enablingpatient care and population management so as to mitigate the untoward effect of an

individual's limited health literacy skills on their health and healthcare costs[Figure

1).

FIGURE 1: Features of a health literate healthcare organization

1. Establish Promoting Health Literacy as an Organizational Responsibility

0rganizational leaders should establish a culture of clear communication.Leadership should raise organization-wide awareness about the importance ofhealth literacy and clear communications across all facets of the healthcare system

and should participate in local, state and national efforts to improve organizationalresponses to limited health literacy. Organizational leaders should make clearstatements about the responsibility of all sectors of their healthcare system toadvance patients' and families' capacities to learn about their illness, carry out self-care, effectively communicate and make informed decisions. Leaders should createan organizational expectation that patients, families and caregivers are well-supported in understanding and managing their health, and that sub-optimalcommunication outcomes due to lack of effort, expertise, or infrastructure are

,/ Effective \/gidirectionaNCommunication

Embedded Policies andPractices

Augmented Workforce

Accessible Educational Tech nologylnfrastructure

Organizationa I Com mitment

viewed as a systems failures and are addressed through systems re-design. Healthliterate health care organizations may choose to employ a Health Literacy Officer orhigh-level Health Literacy Task Force to ensure that health literacy is deeply,explicitly, and continually integrated into quality improvement activities, culturaland linguistic competence efforts, patient safety initiatives, and strategic planning.0ngoing organizational assessments should be carried out to reflect organizationalperformance and progress in promoting health literacy. Promoting health literacyshould be considered when planning organizational operations, job descriptions,evaluation metrics, and budgets. Systems can be put in place to ensure thatmembers of the healthcare team have adequate time and incentives to learn and

implement basic health literacy tools, as well as access more sophisticated resourceswhen necessary. Resources can be earmarked for patient education experts and

community advisory group members who can both train front-line providers as wellas develop and administer specialized curricula to patients with demonstrated need.

2. Develop a Culture of Active Inquiry, Partner in Innovation, and Invest inRigorous Evaluations of Operations Improvements

While the untoward health and economic outcomes associated with limited healthliteracy are now established, the value of existing intervention research to healthliteracy programming at the operations level is hampered by the relative infancy ofthe field and inconsistent results. A recent systematic review of interventionsdesigned to mitigate the effects of limited literacy only found consistent results for a

select number of discrete design features to improve participant comprehension

[presenting essential information by itself or first; presenting information so thatthe high number is better; presenting numerical information in tables rather thantext; adding icon arrays to numerical information; adding video to verbal narrative)

[Sheridan et al.201,1). In addition, some studies found that intensive "mixed-strategy" interventions focusing on self- and disease-management reducedemergency and hospital utilization and disease severity. The common features ofmixed strategy interventions that changed health outcomes included having theorybasis, pilot testing, high intensity, emphasis on skill-building and delivery by ahealth professional. Finally, the relative paucity of 'real-world' implementationresearch involving representative populations in non-academic healthcare settingshas further limited the value of prior research efforts for informing health literacyprogramming at an organizational level. Rather than waiting for others to identifysolutions, health literate healthcare organizations develop mutually beneficialpartnerships with health literacy researchers spanning a range of disciplines to helpdevelop, identify, implement and evaluate health literacy interventions whoseresults will have an immediate relevance to organizational processes [Allen et al.

201.Ð.

3. Measure and Assess the Health Literacy Environment and CommunicationClimate

A health literate healthcare organization establishes ongoing mechanisms and

metrics to measure the success of their system in achieving the health literacyattributes described above, to evaluate special health literacy programs, and to

identify areas for further improvement. Such organizations perform institutionalhealth literacy reviews focused on the health literacy environment and the variety ofcommunication and support systems in place. Templates for such reviews are

available by AHRQ for health practices (DeWalt et al. April 2010J and pharmacies

(f acobson et al.2007) and can be adjusted to apply to any healthcare organization.

Organizations can undertake a 360 degree assessment of their communicationclimate and culture. For example, there is evidence that a better organizationalcommunication climate, as measured by the Communication Climate Assessment

Tool, is associated with better quality of care [Wynia et al. 2010). In addition, ifinvestments have been made for the educational support infrastructure as

described above, organizations can monitor patient understanding of their medical

conditions, both on individual and population levels, 0rganizations can also trackprovider implementation of best practices in communication and instituteadditional educational initiatives and incentives to encourage adoption of these

practices. Health plans, health insurance organizations, and Medicare prescriptionbenefits plans will need to develop assessment tools similar to those of othercustomer service industries, but inclusive of the attributes described above. An

example of a self-assessment tool recently develop for health insurers is the Health

Plan 0rganizational Assessment of Health Literacy Activities developed byGazmararian and colleagues for America's Health Insurance Plans IAHIP)(America'sHeaÌth Insurance Plans; Gazmararian et al. 2010). This tool assesses health plans on

6 areas, including: Printed Member Information;Web Navigation; MemberServices/Verbal Communication; Forms; Nurse Call Lines; and MemberCase/Disease Management.

4. Commission and Actively Engage a Health Literacy Advisory Group thatRepresents the Target Populations

Too often end users with limited literacy skills are consulted only for the evaluationcomponent of an intervention, to assess established curricula, or are never

consulted. As a concrete example of community engagement, health literateorganizations can involve health literacy advisory groups in the development and

implementation of clear communication strategies and in the formulation oforganizational policies around health literacy and clear communication. The

advisory group can also participate in needs assessments, review educationalmaterials, test new health IT applications, and be part of the evaluation teamassessing the successes of an organization's health literacy programming. Healthliterate health organizations involve members of lower literacy populations, adulteducators, and experts in health literacy in the development, implementation and

assessment of communication strategies and in ensuring user-centered designprinciples are adhered to and that members of the target community are keycollaborators in intervention design and implementation. Management teams can

B

commission an advisory group of community literacy experts [including educatorsand limited literacy populations) for this purpose. For example, the Department ofHealth and Human Service's National Action Plan to Improve Health Literacyhighlights the collaborative efforts of the Iowa Health System and the New Readers

of Iowa as an exemplary model for partnering with community based organizationsas a means of enabling community involvement, guidance, and oversight regardinghealth literacy activities (US Department of Health and Human Services Office ofDisease Prevention and Health Promotion 2010). Some advisory groups evolve intoongoing patient learning resource centers or serve as key connectors to communityadult literacy programs.

5. Provide the Infrastructure to Avail Front-Line Providers, Patients andFamilies With a Package of Appropriate, High-Quality Educational Supportsand Resources

While front-line clinicians can develop the skills and attitudes to be clear andeffective communicators and to assess patients' level of comprehension andpreparedness, they cannot independently provide the depth, quality and complexityof communication needed for every patient and every situation, nor can theyconsistently and reliably carry out the iterative assessments and educational effortsrequired to maximize patient understanding and skill acquisition over time. Healthliterate health care organizations recognize that promoting patient comprehensionand building patient skills requires high-quality human, technical and pedagogicalresources that are easily accessible across the organization. As such, they provideclinicians and patients access to a functional infrastructure and a package of highquality educational supports including written materials, video material, on-linematerial and in-person and group-level education that adheres to clearcommunication and user-centered design principles. While adjunctive writtenhealth information serves as a critical method of reinforcing health knowledge and

behaviors introduced during in person interactions, it can only serve as such if itslanguage, content, and design elements facilitate comprehension. Health literatehealth care organizations can also establish a formal process of involving themembers of the low literacy community via a Health Literacy Advisory Board inplanning, developing, and testing written health information to ensureappropriateness, Multiple tools are available to assist health educators andadministrators tasked with developing health related written materials (NationalCancer Institute I994). Key components include attention the use of simple,everyday, words, short sentences, appropriate graphics, and well- designed layouts.There should also be focus on content of the health material, with emphasis on'chunking'information into discrete, manageable, content and focusing onactionable health items rather than general information.

Health literate healthcare organizations make a commitment to providing patientsand families with communication and educational support beyond the face-to-faceclinician visit to the greatest extent possible. This support can involve visit

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preparation, post-visit reinforcement, self-management support, decision supportand educational reinforcement during transitions in care. This requires a healthliterate healthcare organization to develop a functional educational infrastructure tosupport providers, patients and caregivers. Ideally, many educational materials,

decision aids and supports are linked to the organization's electronic health record.

While there are many institutions and organizations that produce such material, toour knowledge there is no single clearinghouse that provides an all-encompassing

compendium of health literacy appropriate material. There are, however, publiclyavailable websites for patient education that provide certain materials that may be

more comprehensible to the average US patient [Medline-Plus has an'easy to read'

icon for material written at the sth-Bth grade level, and 'tutorials' written at the Sth-

6th grade level, and also has an extensive Spanish library of materials) (MedlinePlus)

and some vendors of patient education materials promote the readability of theirproducts. Self-management support programs have been found to be effective withpopulations with chronic disease and limited health literacy [Rothman et al. 2004;

Baker etaL201,La; Schillinger et al. 2009). Decision aids that use simplified text and

complementary video can improve decisionaÌ intent in dementia care planning inpopulations with limited health literacy (Volandes etal.2007; Volandes et al, 2010J

and decisional aids developed through participatory methods can improve decision-

making in breast cancer care reducing decisional conflict to a greater degree among

those with the least knowledge [Belkora et al. 20L].; Belkora et al. 20LL). Finally, use

of virtual patient advocates [embodied conversational agents) as health educators

as a complement to in-person discharge education has been shown to reduce re-

hospitalization, with similar benefits across health literacy levels (Bickmore et al.

200e).

Health literate healthcare organizations have an instrumental role in influencing the

marketplace of patient communication products by demanding rigorous testingwith and adaptation for populations with limited health literacy, and in supportingthe development of national certification standards for print and digital materialthat is accessible to these populations.

6. Leverage Accessible Health Information Technology (IT) to Embed HealthLiteracy Practices and Support Providers and Patients

Because effective communication can be time-consuming, and because of the high

variability in both provider communication skills and patient Iiteracy and learningstyles, health IT holds significant promise in enabling patients to provideinformation and in providing patients with assistance in learning about theirconditions and treatments, making decisions, and managing their conditions athome. In addition to enabling forms of communication beyond the written word

[visual aids, spoken word), health IT can provide both standardized and tailoredinformation based on patient information or needs, and can carry out iterativeeducation to ensure comprehension and mastery, thereby embedding an

established health literacy practice. If developed and pre-tested with populations

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with limited health literacy, such health IT applications can be highly effective andprovide opportunities to deliver education and elicit communication across multiplemodalities. Examples include automated telephony for diabetes self-management inthe home [Schillinger et al. 2009), and embodied conversational agents fordischarge instructions at the bedside (Bickmore et al. 2009). These types ofapplications can be employed across a range of patient informational andcommunication needs and strategies, such as pre-visit preparation, after-caresummaries, or proactive outreach for health care maintenance, appointment-keeping, or medication adherence, among others. AHRQ is currently supporting aneffort to develop a set of standards to determine the attributes of electronic healthcommunication resources that make them appropriate for populations with limitedhealth literacy. As described above, health literate healthcare organizations not onlyshow a willingness to employ such innovations, but participate in the innovationprocess by adapting them to the needs of patients with limited health literacy,and/or requiring that vendors of such applications have demonstrated theireffectiveness with these populations before purchasing them,

7. Provide Patient Training and Assistance around Personal Health Recordsand Health IT Tools

eHealth Literacy refers to the "ability to seek, find, understand, and appraiseinformation from electronic sources and apply this knowledge to addressing orsolving a health problem" [Norman and Skinner 2006). Patients with limited heaìthliteracy often have low eHealth literacy. One specific form of interactive health IT,personal electronic health records (pEHR) give patients the ability to store andaccess personal health information, interact with their provider, and receiveelectronic educational resources. While these technologic advances can improveaccess to health information and advance self-management in some, theirintroduction may widen communication disparities between those with adequateand inadequate health literacy skills. A recent study found that limited literacy skillswere independently associated with significantly lower rates of using a personalhealth record to make appointments, review medication regimens, refillmedications, check laboratory results, or email one's provider, even among thosewith internet access [Sarkar et al. 2010).

Health literate healthcare organizations take steps to ensure that patients with lowhealth and eHealth literacy are able to benefit from technological advances, HealthIiterate healthcare organizations advocate that IT firms developing pEHR implementbest practices in health IT including simple home page design with minimal text perscreen, use of HTML for websites, consistent and simple navigation approach,simplified search tools, minimized need for scrolling, availability of printer-friendlyoptions, and easy to find contact information (Eichner and Dullabh October 2007;Institute of Medicine 2009). Health literate healthcare organizations should solicitinput from the target community into the development and selection of pEHRsystems. A detailed checklist has been developed by the National Resource Center

LL

for Health IT and AHRQ [Eichner and Dullabh 0ctober 2007); health literatehealthcare organizations adhere to these recommendations when developing theirown applications and when purchasing products from vendors. Health literatehealthcare organizations implement educational initiatives so that end users can be

oriented, assisted, trained and motivated in pEHR use to the greatest extentpossible. Finally, because the diffusion of digital innovations will be slower amongpopulations with limited health literacy, health literate healthcare organizations do

not supplant human connection with digital options; information and educationavailable on pEHR should also be accessible through interpersonal means.

B. Foster an Augmented and Prepared Workforce to Promote Health Literacy

The current structure of the US healthcare system places emphasis ofcommunication and education on the physician provider. Patients with limitedhealth literacy report sub-optimal verbal communication with their physicians

[Schillinger et a]. 2004; Health Resources and Services Administration). As care

delivery shifts towards the patient-centered medical home model and accountablecare organizations, health literate healthcare organizations should diversify theirprovider workforce and expand job descriptions in line with the variety ofeducational roles that non-physician members of the health care team will serve in'patient centered health homes'. Priority should be placed on hiring and integratinghealth educators, health coaches, social workers, patient navigators, nurses, medicalassistants and even peers into health management and health education roles.

Health literate healthcare organizations should also ensure that members of thehealth care team reflect the socio-demographic profiles of the patient populationsserved as another means to improve trust and communication. Health literateorganizations should also develop 'expert educators'with cross-cutting educationalskills who can teach others how to teach, teach about specific medical conditions,help evaluate the educational and communication needs of patients to refine oridentify appropriate new curricula, and serve as an organizational contact toindentify electronic educational resources. These approaches to re-designing theworkforce, however logical, will require evaluation to demonstrate return oninvestment, as they have been understudied with respect to reducing healthliteracy-related disparities [Sheridan et al. 2011J.

A health literate healthcare organization provides health literacy and healthcommunication training for all members of the integrated health team:receptionists, team members tasked with helping patients enroll in insurancebenefits or receive social services, case managers, and all medical providers. Thegoal of this training is to provide all members of the team with basic competenciesin clear communication and the ability to recognize when patients have

communication barriers for which clear communication is insufficient and need

more intensive communication support. Through widespread training, healthIiterate organizations can establish a culture in which all members of the healthcareteam work with the unified goal of promoting open communication with patients.

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Healthcare team members specifically tasked with health education roles shouldreceive more detailed training in educational techniques that help patients achieve

mastery over health care material. A number of comprehensive and well designed,

health literacy educational modules are available online (Health Resources and

Services Administration; New York New Jersey Public Health Training Center;

DeWalt et al. April 20L0; American Medical Association 0ctober 2007).

Health literacy experts have identified a number of 'best practices' incommunication that all members of the healthcare team can employ wheninteracting with patients. These include:

o Assessing patient comprehension of pre-specified knowledge domains and

ability to demonstrate specific skills.o Avoiding medical jargon and using plain, everyday ("living room") language

in conversation¡ Limiting the amount of information introduced in each conversationo Prioritizing learning goals to 2-3 concepts per visito Actively eliciting patient's symptoms and concerns. Using the 'teach back,' 'teach to goal,' and 'show me' method [Schillinger et al.

2003) to ensure patient comprehension and skills fthis has been identified as

a top safety practice by the National Quality Forum) [National Quality Forum2010,2005).

o Encouragingquestion-askingo Focusing on information that is actionable

9. Distribute Resources to Better Meet the Needs of the Populations Served

The inverse care hypothesis, a concept that has been applied to explain health care

disparities, states that the availability and quality of healthcare tends to varyinversely with the needs of the population [Schillinger 2007). Health literatehealthcare organizations, however, recognize that the distribution of the healthliteracy workforce across the organization should be commensurate with the localneeds of the populations served. As such, health literate healthcare organizations re-

allocate existing resources, or allocate additional resources to 'underperforming'regions or sites, so that underperformance attributable to a disproportionateconcentration of patients with limited health literacy can be improved upon.

This approach to the allocation ofresources extends to educational and

communication initiatives. Health literate healthcare organizations provide an

intensity and interactivity of communication that is proportional to thecommunication needs of the patients it is targeting, Curricular approaches, such as

the "teach-to-goal" method described below fBaker et al. 2011b), is an example ofdistributing more educational resources ftime and effort) to those who need more.0ther strategies, such as automated telephonic proactive outreach can deliver more

L3

education and interaction between visits for those with greater communicationneeds, thereby helping patients achieve behavioral goals [Schillinger et al. 2008).

10. Employ a Higher Standard to Ensure Understanding of High Risk Decisionsand High Risk Transitions

While promoting patient understanding through well-written health information,understandable verbal communication and visual aids is a core value of healthliterate healthcare organizations, there are high risk decisions in health care, orimportant transitions that demand a heightened level of assurance that patients

[and/or their surrogates if the patient is not competent) fully understand. Healthliterate healthcare organizations often have identified which common decisionsmerit this degree of scrutiny, and have standards and processes in place to ensurethat comprehension has been accomplished, often by embedding health literacypractices, such as exposure to a standardized and well-designed teaching toolcombined with successful demonstration [and documentation) of comprehension ofkey learning objectives using the teach-back method. Some examples of high riskcircumstances include, but are not limited to informed consent for surgery;administration of medications with serious complications or 'black box' warnings,such as chemotherapy, anticoagulants, immunosuppressive agents, or thrombolyticagents; and transitions in care, such as discharge from the hospital. Hospitaldischarge processes can be improved by asking patients to "explain in your ownwords" the reason they were in the hospital and what they need to do to take care ofthemselves when they return home. Prior to surgery patients can be asked to"explain in your own words" the name of the surgery, the reason that it is beingdone, and the hoped-for benefits, likelihood of success and possible risks. Theseresponses offer an opportunity for continued dialogue and education around acritical moment if needed. Patients' responses can also be included in the consentand discharge paperwork as documentation of clear communication andcomprehension. Efforts by the Iowa Health System highlighted in the AMA manual,Health Literacy and Patíent SafeLy: Help Patients Understand provides an example ofsuch a modified consent form (American Medical Association 0ctob er 2007).

11. Prioritize Medication Safety and Medication Communication

A host of studies have shown that patients with low health literacy are more likelyto misunderstand prescription drug labels [Wolf et aI.2007), have difficultyunderstanding drug warnings (Davis et al. 2006), use non-standardized dosinginstruments [Yin et al.2007), have difficulty effectively consolidating medicationregimens if dosing instructions are variable ("every L2 hours" verse "twice a day")

[Wolf Curtis, et al. 2011), err in medication-taking in the post-discharge context('unintentional' non-adherence) (Lindquist et al. 2011J or in the diabetes context(severe hypoglycemia) [Sarkar et al. 20L0), and are less able to identify theirmedications (Kripalani et al. 2006). Additional factors such as poor understandingregarding medication costs, changing formularies, non-standard prescribing factors,

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confusion regarding generic and brand name labeìing, and changing medicationcolors and shapes, make safe medication management even more difficult.

A health literate health care organization prioritizes medication safety byimplementing systems and interventions that advance medication safety and self-

management. In-person, medication reconciliation, such as 'Brown Bag MedicationReviews', provides an opportunity for patients to bring in all of their medications,

including over the counter medications, and review how andwhy fhey take each oftheir medications. It is an opportunity for providers, including but not limited topharmacists, to identify medication errors, such as duplicate medications, reduce

medication burden in the case of poly-pharmacy, and identify patients who need

extra time for medication teaching. Any provider trained with'show me' skills can

help implement'brown bag'reviews. The goal is not only to ensure that the regimen

is accurate, but also to reinforce patients' ability to answer the following questions:"How do I take my medicine, what is it for, and why is it important for me to take it?"

Health literate healthcare organizations recognize that medication reviews, if well-done, are time-consuming and require incentivizing providers with the time and

reimbursement to carry them out.

Health literate healthcare organizations establish internal guidelines on prescribing

including using standardized times and the consistent use of plain language, withoutabbreviations, in all medication prescriptions. Wolf et al (Wolf et aL.201,L) have

published promising work showing that standardized labels, with prescribing

instructions centered around 4 standard time periods and universal language

standards, can improve low literacy patients' ability to dose medications correctlyand improve their ability to consolidate complex regimens into more feasible daily

schedules, Further advances in this field may be supported by changes in the

national guidelines for prescription standards. The Patient Protection and

Affordable Care Act section 5307 (I1.Ith Congress March 23,2010) charges the

secretary and experts in health literacy to determine if standardized prescriptionlabels will improve medication decision making and self management. Because

research suggests that embedding visual aids [pill images) into medicationcounseling and labeling can reduce medication-taking errors (Machtinger et al.

2007),health literate health care organizations employ such visual aids to enhance

safety.

Finally, recognizing that the complexities related to health insurance benefits and

medication cost coverage and co-payments most profoundly affect those withlimited health literacy, health literate healthcare organizations avail prescribingproviders with up-to-date information regarding which medications are covered bya patient's health insurance so as to reduce the likelihood that patients will have tounnecessarily navigate prior authorization procedures. These organizations also

provide staff and resources to patients to help them make decisions regardingmedication options and drug plan options.

15

12. Make health plan and health insurance products more transparent andcomprehensible

As the healthcare industry becomes even more multi-sectoral, patients and theirfamilies are being asked to navigate choices and overcome barriers related to healthinsurance, health providers, and health services and help make a greater number ofdecisions regarding their care that go beyond traditional clinical decision-making.As the Patient Protection and Affordable Care Act IACAJ is enacted, manyAmericans, a large portion of whom will have limited health literacy, will need tomake decisions about health coverage plans, Decision making in the face of medical,financial, and administrative complexity will be overwhelming and burdensome formany. Ensuring that patients with limited health literacy successfully enroll isfundamental to the success of healthcare reform. Health literate healthcareorganizations, including insurance plans, insurance exchanges, and pharmacybenefits managers provide information about benefits packages that is readilyavailable to patients and their families, ensure that this information isunderstandable, and establish straightforward methods for patients and families toaccess in-person support for additional assistance.

Recently proposed regulations regarding the Health Insurance Exchange will assistpatients in deciding between health insurance plans. The regulation requires thatpatients have access to an easy to understand Summary of Benefits and Coverageand to a glossary of terms related to health insurance coverage [United StatesDepartment of Labor August L7 ,20It; US Department of Health and HumanServices August t7, 20LI).

The California Medicaid program (Medi-Cal) recently partnered with the Universityof California-Berkeley School of Public Health to help seniors and people withdisabilities understand their Medi-Cal health care choices, using participatorydesign to create a guidebook in English, Spanish, and Chinese that explainsenrollment options and benefits. The guidebook is easy to understand and includesaccurate cultural adaptations. An evaluation showed that the guidebook increasedunderstanding of enrollment options and the capacity to make choices [Neuhauseret al, 2009J.

13. Make systems more navigable and support patients and families innavigating the healthcare system

Navigation within the healthcare system involves interacting with the builtenvironment and finding one's way between locations. In addition, it requires anability to accomplish the myriad number of tasks needed to manage health withinan increasingly complicated and fragmented medical system. It involves schedulingspecialist appointments, enrolling for insurance services, understanding one'shealth care benefits, dealing with pharmacy benefits management companies,finding locations for diagnostic studies, and connecting with community agencies.

T6

Health literate healthcare organizations work at establishing a shame-free

environment so that patients and their families will be comfortable asking for help

when needed. Employing clear signage, and designing patient-friendly office

procedures, including establishing a welcoming environment, offering assistance

with all literacy related tasks such as reading and completing forms, and assisting

patients with scheduling and finding referral and diagnostic test locations can help

overcome these challenges.

Examples of design interventions that have made systems more navigable,

especially for populations with limited health literacy, include electronic referrals to

specialists (Kim-Hwang et al. 20t0), thereby minimizing the burden on patients to

aggregate and master complex health information related to their consultation.

Medical homes, with their promise of 'one-stop-shopping' can also simplify service

delivery. The 0ne-e-App program, an innovative web-based system, provides an

efficient one-stop approach to enrollment in a range of public and private health,

social service, and other support programs. 0ne-e-App streamlines the applicationprocess through one electronic application that collects and stores information,

screens and delivers data electronically, and helps families connect to needed

services [California HealthCare Foundation August 2010J'

Organization leadership can also enlist a team to perform an environmental

assessment as a means of identifying areas in the built environment that may

represent literacy barriers, such as poor or absent signage, absence ofnavigationalguides including maps, inconsistent labeling of locations and services, and lack ofpresent and available personnel who can provide assistance [Rudd and Anderson

2006; Jacobson et a\.2007). These types of assessments are not just the

responsibility of traditional healthcare delivery units [e.g. hospital or ambulatory

clinic), but also organizations in the health insurance industry, whose processes forenrollment, billing, prior authorization and claims are notoriously difficult tonavigate, often redundant, and generally confusing.

14. Recognize Social Needs as Medical Concerns and Connect People toCommunity Resources

Individuals with limited health literacy are often subject to other social

vulnerabilities. These social needs, included housing instabilit¡ food insecurity, lack

of transportation, unemployment, social isolation,legal concerns, and interpersonal

violence often have direct medical consequences and affect patients' ability toeffectively engage in self-management. However, members of the health team often

miss the opportunity to assess patients for these conditions [Fleegler et al.2007)'Even when providers do identify social needs, health systems may not have the

infrastructure and manpower to connect patients to needed social services.

T7

There are some examples of healthcare organizations implementing efforts topartner with community resources, The Health Leads program[Health Leads;

Robert Wood f ohnson Foundation), a volunteer driven program based in outpatientclinics, allows medical providers to'prescribe' social service needs such as food,

housing, and job training. The prescription is then'filled'by one of the college

volunteers who work with patients to connect with needed social services and can

continue to follow up in the event that there is additional need. The Robert Wood

Johnson Foundation and AHRQ's collaborative Prescription for Health initiativefunded community based projects to explore how primary care practices can makelinkages with community resources to promote healthy behavior. While many ofthese projects were successful, overall analysis of these programs suggests thatsustaining linkages required continued communications between the health care

system and the community resources and argues for a system in which clinicalservices and community services are integrated (Etz et al. 2008; Woolf et al. 2005J.At a minimum health systems can develop a clearinghouse of local resources,identify members of the health care team to become champions in connecting withresources, and partner with case managers or social workers to assist with linkingpatients to resources,

Ultimately, unaddressed 'non-health' social needs of patients will prevent patientsfrom fully benefitting from the healthcare system and partnering in care. A healthliterate organization views linking patients with social resources as a fundamentalpart of providing medical care and ensures that there are systems in place to ensurethat these connections are made.

15. Create a Climate in Which Question-Asking is Encouraged and Expected

Patients with limited health literacy have been found to be less likely to askquestions of their provider or have interactive communication in a visit. They maynot disclose their challenges with reading and comprehension due to shame (Parikhet al.1,996J. Interventions to 'activate' patients to be more involved and to advocatefor themselves hold promise as a means to increase question-asking andinteractivity. Health Iiterate health care organizations encourage and expectpatients to be asking questions of their health care teams. The National SafetyFoundation,4sk Me 3 campaign attempts to facilitate communication betweenpatients and providers by encouraging patients to ask the following questions: [AskMe 3)L. What is my main problem?2. What do I need to do?3. Why is it important for me to do this?0rienting providers to these questions, displaying posters and distributingbrochures encouraging the use of the Ask Me 3 questions may be an effective step inempowering patients to ask more questions, especially when it is Iinked withclinician training in health literacy, including the importance of minimizing patientshame [Mika etal.2007), Additional resources, such as the Agency for Healthcare

1B

Research and Quality IAHRQ) "Questions are the Answers" (Agency for HealthcareResearch) website can help patients formulate a list of questions to remember toask their providers during their medical visit. Both of these initiatives can bestrengthened by having allied members of the healthcare team encourage andremind patients to think of questions while preparing for their visits and focuslearning around these questions between visits.

16. Develop and Implement Curricula to Develop Mastery of a Threshold-LevelSet of Knowledge and Skills

In order to improve skill-building and help patients reach behavioral goals, as wellas to track patient progress over time and across settings, health literate healthcareorganizations develop curricular programs that acknowledge and are designedaround the learning constraints related to patients'working memory (generally afixed capacity) and cognitive load fthe learning demands, based on the complexitiesand quantity of the material). Baker et al. [Baker et al. 201tb) describe 6 principlesin helping patients achieve their learning goals:

L. Define a limited set of critical learning goals and eliminate all otherinformation that does not directly support the learning goals

2. Present information in discrete, pre-determined 'chunks'3. Determine the optimal order for teaching the topics4. Develop plain language text to explain essential concepts for each goal and

employ appropriate graphics to increase comprehension and recall5. Confirm understanding after each unit perform tailored instruction until

mastery is attained, and review previously Iearned concepts until stablemastery is achieved

6. Link all instruction to a specific attitude, skill, or behavioral goal

These principles can be integrated into health education initiatives in multiplehealthcare settings being executed by a variety of providers, including physicians,nutritionists, pharmacists, health at home providers, and health educators, Havingagreement on a shared curriculum can facilitate continued, consistent, andcomplementary education in different settings and across time to reinforce andbuild skills to approach mastery,

17. Continually Assess and Track Patient Comprehension, Skills, and Ability toProblem-Solve Around Health Conditions

While health literate healthcare organizations create 'shame-free' environmentswhere question-asking by patients is encouraged and expected, these organizationsalso build in procedures and systems to periodically assess and document patientcomprehension, and basic problem-solving skills across a range of commonconditions that rely on self-management. Exemplar conditions include congestiveheart failure, diabetes, asthma/chronic obstructive pulmonary disease, andanticoagulant care. Examples in heart failure include knowing one's target weight,

t9

knowing what is involved in a daily self-check (leg swelling, weight change, changes

in patterns of shortness of breath, lightheadedness or dizzinessJ and knowing how

to ielf-titrate one's diuretic pill and when to call the medical home to prevent

deterioration (DeWalt et al. 2009; Baker et al. 20L1bJ. Examples in anticoagulant

care for stroke prevention include knowing the signs and symptoms of stroke,

knowing the recommended frequencies of blood testing and their meanings,

accurately reporting one's anticoagulant regimen, being aware that they are on a

medication that interacts with many others medications and therefore requires

vigilance, and recognizing the clinical relevance of bleeding. [Fang et al. 2006J. Such

assessments can identify individuals at risk for poor comprehension, target

immediate educational efforts, and provide an indication for additional educational

supports such that improvements or even mastery can be achieved over time. These

"riérr..nts can also serve as valuable and dynamic information to share with the

broader healthcare team working to improve a patient's health literacy such that

educational efforts reinforce, rather than compete with each other, and so progress

can be tracked. These efforts may also identify individuals with heretofore

unrecognized and common Iearning barriers beyond limited literacy skills, such as

cognitive impairment, learning disabilities, hearing or visual impairment.

18. Recognize and Accommodate Additional Barriers to Communication

Limited health literacy is one of a number of common communication challenges

patients face. Limited English proficiency, cognitive decline, hearing and visual

impairment,learning disabilities, and mental health problems all contribute to clear

communication. Many of these communication barriers travel together. When these

challenges overlap, such barriers tend to compound or even overwhelm literacy-

related obstacles [Sudore et al. 2009). A health literate health care organizationprioritizes providing culturally and Iinguistically competent care and seeks to

implement CLAS guidelines and recommendations (US Department of Health &

Human Services March 2001). Health literate organizations recruit and cultivate a

culturally and linguistically diverse staff and provide training in best practices

working with medical interpreter for all members of the healthcare team. These

organizations also have resources and procedures in place to identify and remediate

heãring loss and visual impairment, as well as identify cognitive impairment that

would require case management andf or engagement of surrogates and familycaregivers.

CONCLUSION

Despite a growing understanding that health literacy challenges represent a

mismatch between patients' health literacy skills and the literacy demands of the

greater healthcare system, until recently, the majority of health literacy efforts have

focused on interventions directed to the patient. The opportunities for systems

redesign surrounding the implementation of the Patient Protection and Affordable

20

Care Act, including health insurance exchanges and Medicaid expansion, the

advanced medical home, accountable care organizations, and health IT expansion,

provide momentum for organizations to integrate principles of health literacy into

organizational objectives, infrastructure, policies and practices, workforcedevelopment, and communication strategies, In this paper, we introduce a set of

attributes, aspirational goals, and foci for institutional investment that health

litèrate healthcare organizations can embrace to begin to address the system-level

factors that can prevent patients and families from fully benefiting from the

healthcare system. This list of attributes and aspirational goals, which is by no

means exhaustive, provides a roadmap for organizational change, and relates most

clearly to organizations that provide direct care to patients. However, a majority of

the goals and attributes are also relevant to the broader range of organizations,

stakeholders and institutions that comprise the modern health care system, We see

this paper less as the definitive response to the challenge of defining a "health

literate health care organization", and more as an attempt to advance an optimistic

vision of how organizations should evolve to be more responsive to the needs of

populations with Iimited health literacy in tangible ways, thereby improving care for

all.

21

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