The Value of Community Health Literacy Assessments: Health Literacy in Maryland

Abstract

Objective

Community health assessments have typically not measured health literacy at the community level. We developed the Community Health Literacy Assessment (CHLA) framework to describe county and regional health literacy activities, assets, gaps, and opportunities in Maryland.

Methods

We implemented the CHLA framework in Maryland from January to August 2018. We conducted an environmental scan of Maryland’s 24 counties to identify community resources, health indicators, and organizations. We targeted local health improvement coalitions and health departments for interviews in each county. We conducted qualitative interviews to understand what key community organizations throughout Maryland are doing to implement health literacy best practices and policies. We used summative content analysis to review, quantify, and interpret interview data.

Results

We conducted 57 interviews with participants from 56 organizations representing all 24 counties in Maryland. We captured data on multiple dimensions of health literacy and identified 3 main themes: health literacy assets and activities, health literacy gaps, and health literacy opportunities. The most cited asset was collecting data to inform health literacy practices, the most cited gap was using jargon with community members, and the most cited opportunity was increasing public awareness of existing health programs through improved outreach and teaching health information–seeking behaviors.

Conclusion

A systematic community health literacy assessment is a feasible way to collect a large amount of health literacy data, which can inform strategic planning, determine community interventions, and ultimately lead us toward a health-literate society. We recommend that others replicate the CHLA framework to operationalize health literacy as a health indicator and include it as a community health assessment measure.

The Healthy People 2030 Secretary Advisory Committee states that health literacy occurs when a society provides accurate health information and services that people can easily find, understand, and use to inform their decisions and actions. ¹ This description shifts the focus of health literacy work from measuring and intervening to change people’s health literacy skills to measuring and changing professional, organization, and community-level practices and policies to address health literacy problems and barriers. The 2030 description aligns with recommendations in the National Action Plan to Improve Health Literacy, which outlines ways to improve the nation’s health literacy and create a health-literate society by having public and private sector organizations, community-based organizations, health care and education professionals, and policy makers work together to develop and use health literacy best practices. ² A focus at the professional, organization, and community level suggests the need for assessment tools and data that identify activities and gaps in these contexts and indicate opportunities for improvement. Although some state-level health literacy data on people’s health literacy skills are available in the 2003 State Assessment of Adult Literacy ³ and, more recently, the 2016 Behavioral Risk Factor Surveillance System survey, ⁴ these population-level data do not characterize what professionals, organizations, and communities are doing to address health literacy in their own geopolitical areas. ⁵

Organizations can choose from several tools to assess their internal health literacy practices and policies, such as the Agency for Healthcare Research and Quality Health Literacy Universal Precautions Toolkit, ⁶ the Ten Attributes of Health Literate Health Care Organizations, ⁷ the HLE2 Assessment Tool, ⁸ and the Health Literacy Champions Toolkit. ⁹ However, the health literacy field lacks frameworks and assessment tools that extend beyond single organizations to facilitate descriptions, data collection, and analysis of multiple organizations, communities, or even geopolitical areas (ie, county) that often share public health responsibilities and resources that could affect health literacy. ¹⁰ To address this gap, a team from the University of Maryland Horowitz Center for Health Literacy, which included the authors (H.P., K.K., C.B.), adapted the standard community health assessment process to create a Community Health Literacy Assessment (CHLA) framework. Maryland was an ideal state in which to test the framework because some organizations in the state have made health literacy a priority. Maryland has state laws encouraging health literacy education and training for students and practicing health professionals, and the Center for Health Literacy leads a statewide coalition. The CHLA framework, which is described elsewhere, ¹¹ allowed our team to capture data on multiple dimensions of health literacy at the county and local coalition levels and across jurisdictions.

Previously, our team ¹¹ proposed that the community health assessment model used by public health departments and hospitals to gather important community health data in a geographically defined area could be adapted for health literacy work. ¹² The framework has 7 steps that organizations can follow to collect health literacy information at the community, county, region, or state level (Figure). We found that the adapted framework gives local and county organizations the opportunity to characterize health literacy both internally and across organizations, and we described participant descriptions of health literacy and organizational rankings on the use of health literacy best practices. ¹¹ This study reports the results of qualitative analyses of our Maryland assessment in more detail using the adapted framework.

Figure.

Community Health Literacy Assessment framework.

Methods

We conducted an environmental scan to gather background data on Maryland’s 24 counties. The study team created a template for each county in Maryland to methodically record important information found through internet and database searches. The environmental scan included a review of publicly available community health assessment reports, county indicators, population demographic data, and local health organizations. The team examined available community health assessments to understand county health priorities and determine whether counties were implementing health literacy activities. After the environmental scan, the team developed an interview protocol, which included an email template for scheduling interviews and for talking with local health improvement coalition (LHIC) staff members to gain access to their membership list to schedule additional interviews with community leaders, and a semi-structured interview guide. We pilot-tested the semi-structured interview guide with 2 health department staff members to assess question flow, clarity, and understandability. After updating the interview guide, the team conducted semi-structured interviews with community partners and leaders from community-based organizations, health departments, health care facilities, and LHICs throughout Maryland. We used a qualitative approach to understand what key community organizations, health care facilities, and health departments throughout Maryland are doing to implement health literacy best practices and policies to improve individual, community, and population health literacy.

Sample

Our team used purposive sampling to identify and select participants who were able to provide information about the health literacy activities, assets, gaps, and opportunities within their organization, county, or region. We used information from the environmental scan of Maryland’s 24 counties (Baltimore City counted as a 24th county per state guidelines) to create a priority list for recruiting potential participants. We targeted LHICs first, because they include local leaders and community partners who determine and address public health priorities in their communities. It was also valuable to connect with participants from local health departments because they often lead community health assessments in their county. We also contacted hospitals, public libraries, federally qualified health centers, faith-based organizations, and nonprofit organizations, although not in any particular order. We used snowball sampling methods to identify additional potential participants.

The University of Maryland Institutional Review Board determined this project to be exempt before data collection. We contacted participants and asked them to participate in a semi-structured in-person or telephone interview. Participants gave verbal consent to participate and allow the research team to transcribe detailed notes during the meeting. Interviews ranged in length from 30 to 60 minutes, and no compensation was offered. We used the tested interview guide to facilitate each interview. Trained team members who conducted the interviews updated and cleaned the interview notes, which were similar to a transcript, and then uploaded and stored them in password-protected files. Additional details about the methods can be found elsewhere. ¹¹

Data Analysis

We used summative content analysis to review, quantify, and interpret interview data. ¹³ We individually reviewed and compared interviews to create codes for health literacy activities, assets, gaps, and opportunities. A code is a label that represents a group of similar interview statements or phrases. For example, we coded a discussion about gaining community input for health material development through the use of evaluation surveys as “asset of community input.” We quantified codes by the number of participants who mentioned a phrase in an interview that matched the code. We counted interviews with organizations that serve multiple counties, such as a tri-county LHIC, for each county served by the organization. The unit of analysis for this study was the county, providing a denominator of 24. Codes were open to revision and updated after every few interviews because the coding process took place while interviews were still occurring. Interviews concluded when saturation was reached for each county or no other participants for the county were available for interviews.

To assess reliability, the first author (H.P.) met biweekly with the second author (K.K.) to create and review codes. After the codebook was created and interviews were completed, 2 independent coders (H.P., K.K.) coded 6 of the same interviews and compared codes, which were consistent. To further enhance reliability, member checking was performed with participants (n = 10) and other community members who attended a community results forum (n = 30), to determine their agreement with interpreted results.

Results

We completed 57 interviews with participants from 56 organizations representing all 24 counties in Maryland during a period of 7 months. Eighteen counties were represented by interviews with a leader from their county LHIC, and a minimum of 2 interviews were completed with organizations per county or LHIC, ensuring that all 24 counties in Maryland are represented in the sample and results. Multiple types of organizations were included in the study (Table 1). Three themes arose during our analysis of the interviews: health literacy assets and activities, health literacy gaps, and health literacy opportunities. We combined activities and assets into 1 theme because we considered health literacy activities to be assets.

Table 1.

Types of organizations participating in interviews about health literacy best practices and policies, Maryland, 2018

Organization type	No. of counties (N = 24)	No. of participants (N = 57)
Local health improvement coalition	18	21
Health department	7	12
Hospital	6	7
Community health center	5	6
Literacy council, public school, and public library	5	5
Nonprofit organization	3	3
Faith-based organization	2	2
Cooperative extension	1	1

Health Literacy Assets and Activities

Participants mentioned 5 key health literacy–oriented activities or assets currently implemented in their communities (Table 2). Participants representing all 24 counties in Maryland mentioned collecting data to inform health literacy practices and discussed community outreach and educational materials, such as sharing health education print or digital materials to improve patients’ ability to manage their own health.

Table 2.

Health literacy assets and activities reported by interviewees (N = 56), Maryland, 2018 ^a

Assets/activities	No. of counties (N = 24)	Quotes
Data collection to inform health literacy practices	24	Through the needs assessment, we know education and literacy levels are lower than the state average. We did do a survey of clinics and health departments 5 years ago to ask about health literacy and found that patients don’t get help filling out forms or understand[ing] prescriptions. —Local health improvement coalition
Community outreach and education materials	24	[The] county gave [the] workgroup money to print pamphlets that give patients resources, hotlines, and community services, in Spanish on the back. They printed another card that talks about how the language used by family and support members can cause stigma and how stigma can prevent people from seeking help. —Local health improvement coalition
In-person community outreach and education	23	A lot of the people we serve are in their homes; community health workers go over discharge papers with clients. Community health workers will also rewrite meal plans with clients and teach them about medication safety. —Community health center
Navigation services	21	During health literacy classes at the hospital, one of our tutors works with groups to discuss health and why it’s important. She gave them a tour of the hospital and taught them how to navigate the hospital over a few weeks. —Literacy program
Health literacy material evaluation	21	We have the public relations department and patient advisory council review things like opioid use education flyers. We also use our education advisory and quality management group. —Hospital

^aInterviewees were from local health improvement coalitions, health departments, hospitals, community health centers, literacy councils, public schools, public libraries, nonprofit organizations, faith-based organizations, and a cooperative extension.

Another common activity and asset mentioned by participants representing 23 counties was community outreach and education materials, where organizations provide in-person health education to community members in a way that they understand. Navigation services was another asset described by participants representing 21 counties and defined as an activity to improve a person’s ability and efficacy to take control of their own health. Participants representing 21 counties mentioned evaluating their materials for health literacy, although most participants did not specify a tool or technique for evaluation. Only 1 participant mentioned using the CDC Clear Communication Index ¹⁴ to evaluate materials.

Health Literacy Gaps

Participants identified 5 health literacy gaps (Table 3). Jargon was a prevalent gap mentioned by participants representing 19 counties. Participants defined jargon as words used by medical providers, programs, or health care workers that may be difficult to understand, and no explanation of these words is provided in plain language to community members. One participant representing several counties said that “[e]veryone is using acronyms, [which is] so confusing.”

Table 3.

Health literacy gaps reported by interviewees (N = 56), Maryland, 2018 ^a

Gap	No. of counties (N = 24)	Quotes
Jargon	19	Vocabulary level on the provider end is not the same as anyone else; even educated people have trouble understanding providers or dentists. —Community health center
Limited health literacy funding	17	We need more funding toward initiatives to address health literacy specifically. —Health department
No dedicated health literacy staff members	17	It is difficult to keep up with the health literacy information in the county because there are only 5 community health workers in the entire county to collect data on health literacy. —Health department
No health literacy evaluation	13	In our Health Wellness Division, [we have] family services and literacy efforts around those programs. But that doesn’t tell you about the impact we are having because we are not measuring. No ways to measure health literacy … gaps [and the] stratification of our population. —Health department
Lack of health literacy advocacy	8	[There is] no statewide health literacy program or overall initiative so all of Maryland could align themselves around the goal to improve health literacy. —Health department

^aInterviewees were from local health improvement coalitions, health departments, hospitals, community health centers, literacy councils, public schools, public libraries, nonprofit organizations, faith-based organizations, and a cooperative extension.

Another gap, mentioned by participants from 17 counties, was limited funds dedicated to health literacy activities. One participant from a rural county shared that there are “no separate funds related to health literacy incorporated into the budget.” Seventeen participants also noted that no staff members were dedicated to conducting health literacy–related work in the community.

Participants from 13 counties stated that they had no process in place to evaluate the effectiveness of their programs or materials in relation to health literacy. Participants from 8 counties mentioned a lack of advocacy for the importance of health literacy and the improvement of programs through implementing health literacy techniques and best practices.

Health Literacy Opportunities

Participants identified 5 opportunities to improve health literacy within their organization, community, or county (Table 4). Participants representing 21 counties discussed the need to increase public awareness of existing health programs and services through improved outreach and by teaching better health information–seeking behaviors. Participants from organizations in 19 counties mentioned the need to bring health literacy into discussions at organizational meetings to raise awareness of the importance of health literacy in all aspects of the health care system. Participants representing 19 counties also noted that increasing or improving current collaborations and partnerships to address health literacy was an opportunity to improve health literacy.

Table 4.

Health literacy opportunities reported by interviewees (N = 56), Maryland, 2018 ^a

Opportunities	No. of counties (N = 24)	Quotes
Increase public awareness of existing health programs	21	It’s because people don’t understand what each organization does and how it can help them. People don’t know the services that are provided through these resources. —Local health improvement coalition
Raise health literacy awareness	19	The first part is to establish very specific goals. What do we mean by health literacy and how do we know if we’ve achieved it? Break down into actionable steps. Work groups that cross many categories of populations and get stakeholder input. —Health department
Enhance partnerships to address health literacy	19	Hospital outreach liaison should build relationships with providers so they will be willing to help [improve the health literacy of their communication]. —Health department
Increase health literacy training	17	Health literacy training for community partners, especially for rural and low-income audiences. —Local health improvement coalition
Require health literacy in funding, programs, curricula, and trainings	16	Include health literacy in our strategic plan . . . so we can really monitor how people are applying it in their activities. —Local health improvement coalition

^aInterviewees were from local health improvement coalitions, health departments, hospitals, community health centers, literacy councils, public schools, public libraries, nonprofit organizations, faith-based organizations, and a cooperative extension.

Participants from 17 counties suggested offering health literacy training to all staff members. A participant from a rural county said, “[m]y greater hope is not so much for the populations, but for the awareness of clinicians, nurses, and staff to think twice, slow down, and use teach-back methods. We need the providers to improve their health literacy techniques.” Finally, participants from 16 counties discussed the need to standardize and require the implementation of health literacy principles as part of funding requirements, program assessments, education curriculums, and required training.

Discussion

To our knowledge, this study is the first to gather data systematically on community health literacy in a heterogeneous state that includes urban, suburban, and rural areas. The CHLA framework that the team created allows organizations, communities, regions, and states to enrich their current community health assessments with new information by documenting and examining health literacy activities and assets, opportunities, and gaps, which can be prioritized in comprehensive health improvement plans. The project team used the CHLA framework to standardize data collection, identify and analyze themes in the responses, and characterize health literacy at the local and state level. We tested the framework by collecting preliminary data on health literacy assets and activities, gaps, and opportunities in Maryland. ¹¹

Fifty-seven participants representing 56 organizations in Maryland identified 15 health literacy assets and activities, gaps, and opportunities, demonstrating how counties in 1 state address health literacy. This study revealed the importance of asking how organizations address health literacy in their communities. The team learned that almost all Maryland counties used many positive steps to address health literacy. Respondents for all 24 counties reported that they use data to inform health literacy practices and that community outreach and education occur in all counties. Respondents from almost all counties noted providing navigation services and evaluating materials for health literacy, although only 1 participant mentioned using the CDC Clear Communication Index ¹⁴ as an evaluation tool.

The gaps and opportunities listed by our respondents align with literature on the persistence of jargon in public information, the need for more accessible information, and the need for trained, dedicated staff members. Jargon as a routine part of health communication with the public was confirmed by participants from most Maryland counties, demonstrating the need for plain language ¹⁵ and teach-back training ¹⁶ for health care, public health, and other organizations that work with the public. Limited funds and no dedicated staff members available to conduct health literacy–related work were 2 widely shared gaps, despite the need to teach the public better health information–seeking behaviors and increase outreach to improve public awareness of existing health programs. Participants indicated that they recognize the importance of internal work to educate and train staff members and external partnerships to share resources and best practices and engage in advocacy. Respondents in 19 counties discussed raising health literacy awareness at organizational meetings, which was also related to a gap noted in 8 counties about the lack of advocacy for the importance of health literacy. Despite Maryland’s laws promoting health literacy education and free courses, toolkits, and readings to train staff members in the teach-back technique, ¹⁶ the Health Literacy Universal Precautions Toolkit, ⁶ the Ten Attributes of Health Literate Health Care Organizations, ⁷ and the CDC Clear Communication Index, ¹⁴ respondents still reported the need for more staff awareness and training. The last opportunity noted by 16 counties was to standardize the implementation of health literacy principles. Organizations can start a health literacy committee internally or as part of a coalition to provide training, establish a material review process, agree on principles, and address other gaps.

Limitations

The initial application of the CHLA had some limitations. First, it is a new method and required a new questionnaire not used in previous studies. Although the concepts used to generate questions for this first iteration came from the well-established community health assessment process, and the items were pilot-tested with 2 health department staff members, any new questionnaire requires additional testing, refinement, and validation. Repeated use of the questionnaire may identify additional factors or issues not covered by the questionnaire. The Center for Health Literacy team intends to use and refine the questionnaire and hopes that other teams will also test the questionnaire and report their results so that the field can confirm and build consensus on core validated questions.

A second limitation was the sampling method and unit of analysis. Although we spoke with participants from organizations of all 24 counties, we were not able to gather the same level of detail for each county. In addition, we were unable to speak to an LHIC representative from all 24 counties because some county LHICs were not very active and other (more rural) counties had collaborative LHICs that conducted strategic planning for an entire region. To address this limitation, the team focused on speaking with participants from organizations responsible for strategic planning in the counties, even when the participant was not representing an LHIC.

A third limitation was that interview data could have been missed when a single research team member was taking detailed notes while interviewing. However, two-thirds of interviews were completed by at least 2 team members (n = 37, 65%), team members were trained on interview techniques, and interviewers could finish taking notes before advancing to the next question.

A fourth limitation of this project was the inherent bias associated with self-reported measurements. All interview responses were self-reports of health literacy efforts in participants’ organizations and counties. Responses could have been biased by participants’ lack of knowledge on improvement efforts, over- or under-describing efforts, not being able to remember the health literacy tools used in efforts, or trying to present a positive view of their contributions. This limitation, however, is the same for organizational self-assessment tools, such as the Health Literacy Universal Precautions Toolkit, ⁶ and the team mitigated the bias with independent background research, a review of previously completed public community health assessments, and supplemental interviews with organizations and experts familiar with Maryland as a whole.

Conclusions

This project offers an initial example to public health practitioners, health care professionals, and researchers about how to assess community health literacy issues using a standard framework based on well-established community health assessment principles. We prioritized LHICs, health departments, and hospitals because these groups are typically the ones that decide what should be measured in a community health assessment. The project team recommends that health literacy become a part of regular community health assessment measures because results can inform broader community health assessments and allow teams to address community health literacy issues within comprehensive health improvement plans. Health literacy assessments can also provide data for health departments’ Public Health Accreditation Board applications, which require documentation of health literacy efforts.

The Horowitz Center for Health Literacy intends to replicate this project to refine the data collection process, track changes in improvement efforts, and deepen our understanding of how community health literacy functions. We recommend that other teams replicate the CHLA framework to identify similar geopolitical health literacy assets and activities, gaps, and opportunities. These assessments need to be repeated periodically before health literacy can be operationalized in the same way as other population health indicators, such as obesity or vaccination rates, and to provide a reliable account of health literacy at the state and local level.