Journal of Gerontological Nursing

Research Brief 

Assessing Health Literacy Knowledge and Practice for a PACE Program

Denise Isibel, DNP, RN, CNE

Abstract

The complexity of health care systems requires coordination among multiple health care providers to adopt strategies that are congruent with patients' levels of health literacy. In the current study, 12 interdisciplinary members of a Program of All-Inclusive Care of the Elderly (PACE) completed the Assessment Questionnaire from the Agency for Healthcare Research and Quality (AHRQ) Health Literacy Universal Precautions Toolkit. Once the questionnaire was complete, organizational priorities were identified and the AHRQ Toolkit was used to develop next steps. Of the five subsets included in the Toolkit, the organization identified three as priorities: (a) development of a health literacy team; (b) improving spoken communication with patients and caregivers; and (c) improving written information given via letters and home instructions. Organizations, nurses, and quality care leaders may find these results useful as they seek to assess organizational literacy and develop improvement plans. [Journal of Gerontological Nursing, 46(6), 12–18.]

Abstract

The complexity of health care systems requires coordination among multiple health care providers to adopt strategies that are congruent with patients' levels of health literacy. In the current study, 12 interdisciplinary members of a Program of All-Inclusive Care of the Elderly (PACE) completed the Assessment Questionnaire from the Agency for Healthcare Research and Quality (AHRQ) Health Literacy Universal Precautions Toolkit. Once the questionnaire was complete, organizational priorities were identified and the AHRQ Toolkit was used to develop next steps. Of the five subsets included in the Toolkit, the organization identified three as priorities: (a) development of a health literacy team; (b) improving spoken communication with patients and caregivers; and (c) improving written information given via letters and home instructions. Organizations, nurses, and quality care leaders may find these results useful as they seek to assess organizational literacy and develop improvement plans. [Journal of Gerontological Nursing, 46(6), 12–18.]

As health care increases in complexity and patient participation becomes an imperative, attention to health literacy becomes key. Health literacy can be defined 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” (Nielson-Bohlman et al., 2004, p. 31). Assessing an organization's competence to provide appropriate care at all levels of health literacy and then taking steps to address any issues that are identified may decrease liability and enhance the delivery of safe, equitable care. Health literacy cannot always be seen. As patient-centered care and interdisciplinary teams become the norm, all health care providers need to have a working knowledge of health literacy, allowing them to assess and implement strategies to address varying levels of health literacy.

Health literate organizations create an environment where there is an increased understanding of patient care needs, heightened communication, increased teamwork, and more efficient use of resources (Brach et al., 2012). In 2010, the National Action Plan to Improve Health Literacy and Health Literacy Implications of the Affordable Care Act was published; at the same time, the National Academies of Science Health and Medicine Division was building a case for health literate organizations (Somers & Mahadevan, 2010; U.S. Department of Health and Human Services [USDHHS], 2010). The consensus from these national sources was that initiatives to address health literacy need to be launched at the organizational level in a comprehensive, organized manner. All individuals will benefit when all levels of an organization use health literacy strategies in communication techniques, plain language, and technology that are culturally appropriate (Brach et al., 2012; Institute of Medicine, 2012; Koh et al., 2013; Rudd, 2010; USDHHS, 2010). Organizational changes that accommodate various levels of health literacy are associated with increased patient engagement, decreased hospital readmissions, and improved communications (Cawthon et al., 2014; Mitchell et al., 2012; Ryan et al., 2014).

The idea of health literate organizations is relatively new. Use of the principles of health literate organizations is limited in the literature but gaining ground. In 2011, Schillinger and Keller described 10 attributes of a health literate organization that include organizational commitment, accessible education technology, embedded policies and practices, and effective communication between patients and providers. These attributes state that a health literate organization:

  • Has leadership that makes health literacy integral to its mission, structure, and operations.

  • Integrates health literacy into planning, evaluation measures, patient safety, and quality improvement.

  • Prepares the workforce to be health literate and monitors progress.

  • Includes populations served in the design, implementation, and evaluation of health information and services.

  • Meets the needs of populations with a range of health literacy skills while avoiding stigmatization.

  • Uses health literacy strategies in interpersonal communications and confirms understanding at all points of contact.

  • Provides easy access to health information and services and navigation assistance.

  • Designs and distributes print, audiovisual, and social media content that is easy to understand and act on.

  • Addresses health literacy in high-risk situations, including care transitions and communications about medicines.

  • Communicates clearly what health plans cover and what services individuals will have to pay for (Schillinger & Keller, 2011).

Somers and Mahadevan (2010) believed that attention needed to be devoted to workforce education in health literacy and preparation at all levels of health care with low health literacy in mind. Using assessments of health literacy understanding and tools will make health care organizations more productive and responsible, and will help meet the health literacy needs of the people they serve. These approaches support the use of health literacy principles, such as clear communication, useful written communication, and easy-to-use forms and instructions, for all patients. Using the National Action Plan to Improve Health Literacy (USDHHS, 2010) and the 10 attributes of a health literate organization, the Agency for Healthcare Research and Quality (AHRQ) created a toolkit to assist primary health care practices to increase patient understanding of health care services and information, no matter the health literacy level of the patient (Brega, Barnard, et al., 2015).

Organizations must create an environment that prepares a workforce with a heightened sensitivity for health literacy. Organizations that value health literacy integrate health literacy awareness into all aspects of their work with emphasis on patient care (Brach et al., 2012; Koh et al., 2013). The complexity of health care systems requires not only coordination of multiple health care providers, but also the ability of these providers to understand the principles of health literacy and use interventions that are congruent with patients' health literacy levels. An awareness of health literacy is necessary for positive patient outcomes; however, health care providers across disciplines have gaps in awareness, knowledge, and clinical recognition of health literacy, as well as skills to address low health literacy (Coleman, 2011; USDHHS, 2010).

The Program for All-Inclusive Care for the Elderly (PACE) is a national program providing comprehensive medical and support services for older adults who may otherwise be placed in long-term care institutions. The program uses an interdisciplinary team to coordinate and manage care. At one local PACE program, administrators were concerned that health literacy was not being actively managed from a professional approach that benefits all patients. These administrators also recognized that the current staff would benefit from a deeper understanding of health literacy related to the dissemination of health care information (K. Menefee, personal communication, January 2015). Because there was uncertainty about how to begin the process, a needs assessment was necessary.

Purpose

The purpose of the current project was to conduct a needs assessment to: (a) assess the health literacy knowledge of the interdisciplinary team; and (b) develop a health literacy quality improvement plan using the AHRQ Health Literacy Universal Precautions Toolkit (Brega, Barnard, et al., 2015).

Intervention

PACE administrators could identify isolated efforts to address health literacy, but did not have a plan to enculturate necessary changes. The use of the AHRQ Health Literacy Universal Precautions Toolkit provided the team an organized assessment and tools for any interventions. The Health Literacy Assessment Questionnaire enabled analysis of the strengths, weaknesses, and needs of the interdisciplinary team and identified necessary changes. Strategies in the AHRQ Health Literacy Universal Precautions Toolkit include instruments for improving oral communication, written materials, guidelines to connect patients with needed resources, and processes for patient feedback. Results of the assessment were used to develop a quality improvement plan using these strategies to increase the level of health literacy of all members at the program site.

Sample

Participants included 15 members of an interdisciplinary team at a specific PACE site. The team included one business director, one medical director, one clinic manager, three RN case managers, one universal care partner manager, one social worker, one occupational therapist, one physical therapist, one transportation coordinator, one recreation therapist, one chaplain, one dietician, and one financial specialist. Twelve of the 15 members completed the Health Literacy Assessment Questionnaire for a response rate of 80%.

Measurement

The AHRQ Health Literacy Universal Precautions Toolkit Assessment Questionnaire is designed to assess baseline understanding of the current practices within an organization. The questionnaire contains 51 questions that address five domains: (a) practice changes; (b) spoken communication; (c) written communication; (d) self-management and empowerment; and (e) support systems. Each domain contains seven to 15 questions. The four potential responses to each question are doing well, needs improvement, not doing, and unsure. Questions related to practice changes focus on the organization examining current health literacy practices. Questions related to spoken communication focus on specific communication techniques that support patients' understanding of health information. Written communication questions inquire about site-specific health education materials, letters sent to patients, building signage, bulletin boards, and language services. The section on self-management and empowerment is related to helping patients make informed decisions and understand medication information. The final domain of support systems focuses on medication, referral and appointments, and resource assistance. The AHRQ process begins with this detailed assessment of the team, then guides them toward improvement with specific implementation strategies.

Data Collection

The Riverside Health System Institutional Review Board (IRB) and Vanderbilt University IRB granted the current project exempt status. A letter was sent to the interdisciplinary team describing the project and requesting that staff complete the 51-question Health Literacy Assessment Questionnaire. The letter included a short description of the importance of health literate organizations and informed the team that results of the survey would be used to develop a quality improvement plan for the team. The Health Literacy Assessment Questionnaire was distributed in hard-copy format 1 week after the letter was sent to all team members. Hard-copy distribution was selected to enable quick completion of the questionnaire by the entire team at one time. The questionnaire was distributed at the end of the daily meeting by the site director and completed by the members of the interdisciplinary team. Total completion time was 25 minutes. The project manager picked up the completed questionnaires the following day. Descriptive statistics were computed using Microsoft® Excel.

Results

Health Literacy Assessment Questionnaire

Of the five domains assessed, practice changes, spoken communication, and written communication were the areas that needed the most improvement. The PACE team reported that the categories of support systems (50%) and self-management (60%) were doing well (Figure 1). The following are the key findings that were used to develop the quality improvement plan for the PACE interdisciplinary team.

Responses to the Health Literacy Assessment Questionnaire.

Figure 1.

Responses to the Health Literacy Assessment Questionnaire.

In the domain of practice changes, it became clear that a health literacy team did not exist. Ninety-one percent of the team responded that they were unsure whether a plan existed or whether staff members had received health literacy education. A significant concern was identified in that 84% (n = 12) did not believe that all levels of the organization would support changes to make it easier for patients to navigate services or information. Having a designated team increases the ability of an organization to improve its health literacy (Brega, Freedman, et al., 2015).

In the domain of spoken communication, the team responded to 11 of 17 questions as needs improvement, not doing, or not sure. Participant responses included staff using too many talking points, using audio/video materials to assist with education, not providing instruction on equipment, using the teach-back method, understanding internet resources, routine review of medications and supplements, and teach-back on medication administration. All team members responded that their practice did not routinely update medication lists or provide easy-to-understand language on taking medications.

Eight team members were not sure whether the telephone system had an option for patients to connect directly with a person. Because PACE participants are older adults, need caregiver support, are low income, and enrolled in the program as an alternative to nursing home care, having a person answer the telephone rather than an automated system can decrease the number of telephone calls a patient must make, rectify incorrect information about instructions, and prevent patients from giving up because they are unable to navigate the multiple prompts.

For seven of the 11 questions in the domain of written communication, the majority of respondents answered needs improvement or not doing. Although there was agreement that signs in the building were clear and understandable, more than two thirds of responders were concerned that information given to patients was not organized or written in concise, plain language. These concerns extended to laboratory test results letters mailed directly from provider to patient. Reponses also indicated lack of patient feedback on written materials.

Finally, seven responders believed that clinicians needed to do more to help patients set goals, achieve those goals, and then solicit patient feedback. Seventy percent of respondents were not sure whether a patient's ability to pay for medication was assessed or whether staff connected patients with medication assistance programs. Results in the domains of self-management and support systems showed that although PACE was considered patient-centric, specific interventions were needed to increase patient feedback and engagement.

Quality Improvement Plan

Results of the AHRQ questionnaire identified priorities for a quality improvement plan that aligned with specific interventions in the toolkit. The areas requiring immediate attention included the need to create a health literacy team, improving telephone communications, reviewing written materials, and providing consistent medication review and adherence. Five AHRQ tools were identified for implementation: (a) improve telephone access; (b) design easy-to-read materials; (c) use health education materials effectively; (d) improve medication adherence and accuracy; and (e) direct patients to medication resources. In addition, a second set of five tools was identified for questions that had six or more needs improvement responses; these included: (a) teach-back method; (b) brown bag medication review; (c) address language differences; (d) welcome patients with helpful attitudes and signs; and (e) get patient feedback (Table 1). Such a systematic approach in selecting tools allowed for the optimal use of AHRQ resources (Table 2). The implementation of the tools identified as part of the quality improvement plan was left with the Executive Director and is currently ongoing. Next steps for PACE are to implement the tools according to the quality improvement plan and collect additional data to determine successful changes.

Descriptions of Selected Tools from the Agency for Healthcare Research and Quality Health Literate Universal Precautions Toolkit

Table 1:

Descriptions of Selected Tools from the Agency for Healthcare Research and Quality Health Literate Universal Precautions Toolkit

Identified Areas From the Assessment Questionnaire and Corresponding Tools From the Agency for Healthcare Research and Quality (AHRQ) Health Literate Universal Precautions ToolkitaIdentified Areas From the Assessment Questionnaire and Corresponding Tools From the Agency for Healthcare Research and Quality (AHRQ) Health Literate Universal Precautions Toolkita

Table 2:

Identified Areas From the Assessment Questionnaire and Corresponding Tools From the Agency for Healthcare Research and Quality (AHRQ) Health Literate Universal Precautions Toolkit

Discussion

Lack of attention to health literacy costs $180 to $216 billion annually (Eichler et al., 2009). According to an AHRQ study, 1.8 million read-missions costs the Medicare program $24 billion annually, and privately insured readmissions totaled $8.1 billion annually (Brega, Freedman, et al., 2015). Without attention to or an emphasis on health literacy, initiatives to improve quality of care and health outcomes may fail. The current quality improvement project demonstrated how the AHRQ Health Literacy Universal Precautions Toolkit can be used as a first step in building a health literate organization. The ability to assess the health literacy of any team is an important first step to developing an organized plan to improve care. Recognizing the health literacy limitations of a patient is not always easy. Health care information and instructions can include medical terms that even highly educated people may have trouble deciphering. One way to solve this issue and avoid discrimination is to assume that everyone has some difficulty understanding health care information. The AHRQ Health Literacy Universal Precautions Toolkit provides health care teams with a way to build a practice that treats all patients the same and ensures, from entrance to exit, that the health literacy needs of patients are met. The Toolkit is a way for a health care organization to establish health literacy as a core value of its organization.

When building a health literate practice, just as in providing hands-on care, a careful assessment is an important first step. Others have found that developing a task force, cultivating a supportive environment, creating a vision for change, and adopting simple strategies were critical to their success (Briglia et al., 2015; Koh et al., 2013). Having a standardized process to consistently apply health literacy strategies will increase patient safety and provide instructions that are clear to all patients.

Conclusion

As health care professionals continue to struggle to overcome health literacy issues, the combined effects of an aging population and health care reform make it imperative for organizations to address health literacy at the system level. It is important that health care professionals recognize the organizational risks when their work-force's health literacy is questionable. The AHRQ Health Literacy Universal Precautions Toolkit provides organizations with a comprehensive, structured quality improvement plan to efficiently and effectively implement changes that will improve its health literacy.

References

  • Brach, C., Keller, D., Hernandez, L. M., Baur, C., Parker, R., Dreyer, B. & Schillinger, D. (2012). Ten attributes of health literate health care organizations. The National Academies Press.
  • Brega, A. G., Barnard, J., Mabachi, N. M., Weiss, B. D., DeWalt, D. A., Brach, C., Cifuentes, M., Albright, K. & West, D. R. (2015). AHRQ health literacy universal precautions toolkit (2nd ed.). https://www.ahrq.gov/sites/default/files/publications/files/healthlittoolkit2_4.pdf
  • Brega, A. G., Freedman, M. A., LeBlanc, W. G., Barnard, J., Mabachi, N. M., Cifuentes, M., Albright, K., Weiss, B. D., Brach, C. & West, D. R. (2015). Using the health literacy universal precautions toolkit to improve the quality of patient materials. Journal of Health Communication, 20(Suppl. 2), 69–76 doi:10.1080/10810730.2015.1081997 [CrossRef]
  • Briglia, E., Perlman, M. & Weissman, M. A. (2015). Integrating health literacy into organizational structure. Physician Leadership Journal, 2(2), 66–69 PMID:26211214
  • Cawthon, C., Mion, L. C., Willens, D. E., Roumie, C. L. & Kripalani, S. (2014). Implementing routine health literacy assessment in hospital and primary care patients. Joint Commission Journal on Quality and Patient Safety, 40(2), 68–76 doi:10.1016/S1553-7250(14)40008-4 [CrossRef] PMID:24716329
  • Coleman, C. (2011). Teaching health care professionals about health literacy: A review of the literature. Nursing Outlook, 59(2), 70–78 doi:10.1016/j.outlook.2010.12.004 [CrossRef]
  • Eichler, K., Wieser, S. & Brügger, U. (2009). The costs of limited health literacy: A systematic review. International Journal of Public Health, 54(5), 313–324 doi:10.1007/s00038-009-0058-2 [CrossRef] PMID:19644651
  • Institute of Medicine. (2012). How can health care organizations become more health literate? Workshop summary. The National Academies Press.
  • Koh, H. K., Brach, C., Harris, L. M. & Parchman, M. L. (2013). A proposed ‘health literate care model’ would constitute a systems approach to improving patients' engagement in care. Health Affairs, 32(2), 357–367 doi:10.1377/hlthaff.2012.1205 [CrossRef] PMID:23381529
  • Mitchell, S. E., Sadikova, E., Jack, B. W. & Paasche-Orlow, M. K. (2012). Health literacy and 30-day post discharge hospital utilization. Journal of Health Communication, 17(Suppl. 3), 325–338 doi:10.1080/10810730.2012.715233 [CrossRef]
  • Nielson-Bohlman, L., Panzer, A. M. & Kindig, D. A. (Eds.). (2004). Health literacy: A prescription to end the confusion. The National Academies Press.
  • Rudd, R. E. (2010). Improving Americans' health literacy. The New England Journal of Medicine, 363(24), 2283–2285 doi:10.1056/NEJMp1008755 [CrossRef] PMID:21142532
  • Ryan, L., Logsdon, M. C., McGill, S., Stikes, R., Senior, B., Helinger, B., Small, B. & Davis, D. W. (2014). Evaluation of printed health education materials for use by low-education families. Journal of Nursing Scholarship, 46(4), 218–228 doi:10.1111/jnu.12076 [CrossRef] PMID:24597957
  • Schillinger, D. & Keller, D. (2011). The other side of the coin: Attributes of a health literate health care organization. The National Academies Press.
  • Somers, S. & Mahadevan, R. (2010). Health literacy implications of the Affordable Care Act. Centers for Health Care Strategies.
  • U.S. Department of Health and Human Services. (2010). National action plan to improve health literacy. http://www.health.gov/communication/HLActionPlan/pdf/Health_Literacy_Action_Plan.pdf

Descriptions of Selected Tools from the Agency for Healthcare Research and Quality Health Literate Universal Precautions Toolkit

ToolDescription
Tool 5: Teach-back methodDescribes the teach-back method for patient instruction and use of plain language
Tool 7: Telephone considerationsSuggestions for using the phone system as a patient Keep automated systems simple with no more than five choices Develop written scripts for practitioners Create a brochure that explains the phone system and prompts
Tool 8: Brown bag medication reviewHave patients bring in all medications for review on a regular schedule Have patients tell the practitioner how they take each medicine and review with the practitioner correct dosage and timing
Tool 9: How to address language differencesIdentify language preferences Use acceptable language services Plan for interpreters in advance Provide written materials in preferred language
Tool 11: Design easy-to-read materialsUse readability formulas and assessments Ask patients to evaluate forms and written materials Use online guides to develop materials that are easy to understand
Tool 12: Use health education material effectivelyReview handouts with patient Underline sections for emphasis Use teach-back method Add audio for support
Tool 13: Welcome patients with helpful attitudes and signsShadow a patient as they enter the facility for clues/ideas for improvement Review signs for understanding Train staff on first impressions Offer all patients help with forms
Tool 16: Improve medication adherence and accuracyAsk patients how they remember to take their medicine Provide patients with a chart of their medicine and reminder form Provide pill boxes Enlist help from family members Synchronize refills
Tool 17: Get patient feedbackSurvey patients Suggestion boxes
Tool 19: Medication resourcesAsk patients about their ability to pay for medicines Review insurance coverage Connect patients with medicine assistance programs

Identified Areas From the Assessment Questionnaire and Corresponding Tools From the Agency for Healthcare Research and Quality (AHRQ) Health Literate Universal Precautions Toolkita

Assessment QuestionAssociated AHRQ Tool
With Six or More Responses of Not Sure or Not Doing
  Question 7: Our Health Literacy Team understands how to implement and test changes designed to improve performance.Tool 2: Raise awareness Tool 3: Develop a Health Literacy Plan (deliverable from a Quality Improvement project)
Question 22: If there is an automated telephone system, one option is to speak with a person.Tool 7: Telephone considerations
Question 28: Our practice's patient education materials are concise, use plain language, and are organized and formatted to make them easy to read and understand.Tool 11: Design easy-to-read materials
Question 30: Our practice's forms are easy to understand and fill out, and collect only necessary information.Tool 11: Design easy-to-read materials Tool 12: Use health education material effectively
Question 31: Lab and test results letters are concise, use plain language, and are organized and formatted to make them easy to read and understand.Tool 11: Design easy-to-read materials Tool 12: Use health education material effectively
Question 43: Staff members assess patients' ability to pay for medicinesTool 16: Improve medication adherence and accuracy Tool 19: Medication resources
Question 44: Staff members connect patients with medicine assistance programs, including helping them fill out applications as neededTool 16: Improve medication adherence and accuracy Tool 19: Medication resources
With Six or More Responses of Needs Improvement
  Question 5: All levels of practice staff have agreed to support changes to make it easier for patients to navigate, understand, and use health information and services.Tool 2: Raise awareness
Question 9: All staff members listen carefully to patients without interrupting.Tool 5: Teach-back method
Question 10: All staff members limit themselves to three to five key points and repeat those points for reinforcement.Tool 5: Teach-back method
Question 12: Our practice ensures patients have the equipment and know-how to use recommended audio-visual materials and internet resources.Tool 12: Use health education material effectively
Question 13: All clinicians talk with patients about any educational materials they receive during the visit and emphasize the important information.Tool 5: Teach-back method Tool 12: Use health education material effectively
Question 14: All staff members ask patients to state key points in their own words (i.e., use the teach-back method) to assess patients' understanding of information.Tool 5: Teach-back method
Question 15: Clinicians routinely review with patients all the medicines they take, including over-the-counter medicines and supplements, and ask patients to demonstrate how to take them.Tool 5: Teach-back method Tool 8: Brown bag medication review
Question 16: Our practice routinely provides patients with updated medicine lists that describe in easy-to-understand language what medicines the patient is to take and how to take them.Tool 11: Design easy-to-read materials Tool 16: Improve medication adherence and accuracy
Question 29: If appropriate, our written materials are available in languages other than English.Tool 9: How to address language differences Tool 11: Design easy-to-read materials
Question 32: The name of the practice is clearly displayed on the outside of the building, and signs are posted throughout the office to direct patients to appropriate locations (e.g., practice entrance, restrooms, check-in, check-out, lab, etc.).Tool 13: Welcome patients with helpful attitudes and signs
Question 37: Clinicians help patients choose health improvement goals and develop action plans to take manageable steps toward goals.Tool 3: Raise awareness Tool 17: Get patient feedback
Authors

Dr. Isibel is Assistant Professor, University of North Carolina Wilmington, Wilmington, North Carolina.

The author has declared no potential conflicts of interest, financial or otherwise.

Address correspondence to Denise Isibel, DNP, RN, CNE, Assistant Professor, University of North Carolina Wilmington, 600 S. Collge Road, Wilmington, NC 28403; email: isibeld@uncw.edu.

Received: February 26, 2019
Accepted: January 03, 2020

10.3928/00989134-20200512-01

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