Queen Essays

2020 vol. 44 no. 5 Australian and New Zealand Journal of Public Health 331 © 2020 The Authors

This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.

Despite the benefits of conducting evidence-based practice, many public health initiatives remain

unsupported by evidence1 and public health policies and practices that have been shown to improve health outcomes are not routinely implemented.2,3 Maximising the impact of public health interventions requires policy-makers and practitioners to use robust evidence to consider both ‘what’ interventions are effective in addressing public health issues and ‘how’ such interventions can best be implemented into practice. However, organisations that deliver public health initiatives face a range of barriers including a lack of skills and capacity when using and generating evidence to aid such decision-making.4,5 The development of decision support tools has been suggested as a useful strategy to help overcome such barriers.6

Decision trees are frequently used tools in health care to assist clinicians to make evidence-based diagnostic and therapeutic decisions.7 Such tools may also be useful for public health policy and service delivery organisations to aid their selection of evidence-based interventions and implementation strategies, and also to identify where further evidence needs to be generated. While a number of process models and decision trees for the medical and nursing field have been published,3,8 few of these address consideration of evidence- informed implementation strategies or evidence generation needs.

In this editorial, we describe a decision tree (Figure 1) developed and utilised in a large public health organisation in NSW, Australia.9

The decision tree tool aims to assist in the application of research evidence to maximise the impact of public health programs and services. The tool helps identify when there is sufficient evidence to support the delivery of particular services, and when there is not. The latter outcome provides an indication of where further research may be needed, identifying opportunities to undertake policy and practice relevant research. At each step in the decision tree, users are posed a question, and based on their response, a service and/or research action is suggested. Health services may have the capacity and expertise to conduct research actions or they may need to commission, partner or collaborate with researchers to do so. This tool should be used with other resources such as the Intervention Scalability and Assessment tool to determine intervention suitability for scaling up.10 Such assessments need to consider end-user values, resource, capability and context.

Step 1. Assessment of intervention options to address health problem

The Public Health Research and Practice Decision Tree starts at the point where the public health service organisation requires information regarding effective interventions to address an identified health problem. Systematic reviews are a recommended source of such evidence.11 Health services could employ or train staff, or engage a research organisation to critically appraise the findings of such reviews where they exist, or undertake a review where a contemporary review does not meet their needs. If a review identifies that effective interventions exist, the decision-maker moves to Step 2 of the tree. If the review identifies either: i) an absence of evidence regarding the impact (adverse or beneficial) of interventions on the health issue; ii) insufficient evidence; or iii) effective interventions that are not suitable for implementation in the local context, (e.g. cannot feasibly be delivered at scale), the conduct of further research is desirable to support intervention selection. Other frameworks have described factors that need to be considered when determining the suitability of an intervention for scaling up, including the severity of the problem it is seeking to address, the strategic/ political context, the intervention costs and benefits to the organisation, fidelity and adaptation to the original program, reach and acceptability, delivery setting and workforce, implementation infrastructure and sustainability.12 To meet this evidence need, public health service organisations

doi: 10.1111/1753-6405.13023

Improving the impact of public health service delivery and research: a decision tree to aid evidence-based public health practice and research Luke Wolfenden,1,2 Christopher M. Williams,1,2 Melanie Kingsland,1,2 Sze Lin Yoong,1,2 Nicole Nathan,1,2 Rachel Sutherland,1,2 John Wiggers1,2

1. School of Medicine and Public Health, The University of Newcastle, New South Wales

2. Hunter New England Population Health, New South Wales

Figure 1: Public Health Practice and Research Decision Tree.

Editorial

332 Australian and New Zealand Journal of Public Health 2020 vol. 44 no. 5 © 2020 The Authors

Editorial

could undertake research, partner with a research organisation, or commission such a trial to test the impact of a new or adapted intervention that aligns with the health service values, capability, infrastructure and context.

Step 2: Assessment of evidence- practice gaps

Once an effective intervention option has been identified or developed, an assessment of the extent to which it is currently being implemented in practice is required (evidence-practice gap assessment).13 Such assessments identify service delivery gaps that may benefit from investment in strategies to improve intervention implementation. Given the importance of equity for many service organisations, this assessment should address gaps in implementation across population sub-groups. Evidence-practice gap assessments can be conducted by service delivery staff or in partnership with researchers through an analysis of routinely collected administrative or service data, or by purpose-specific data collection activities including surveys, stakeholder engagement processes, or service delivery observations. If an evidence-gap assessment reveals effective interventions are being routinely implemented, and according to a sufficient standard across population sub- groups, no further investment in enhancing implementation is required. Nonetheless, a monitoring strategy is recommended to ensure implementation is maintained. Existing public health surveillance systems could be used for this purpose,14 or local monitoring or data collection systems could be developed.

Step 3: Assessment of implementation options

When an evidence-practice gap for a suitable and effective intervention is identified, the service organisation needs to identify effective strategies to ensure adequate implementation of the intervention. Again, systematic reviews can be used or undertaken to assess the effectiveness of implementation strategies. However, the effects of implementation strategies are likely to be contextually dependent, and so the selection of appropriate strategies should also be guided by local data on implementation barriers. Together with systematic review evidence, the use of theoretical frameworks

can help to select potentially effective strategies to overcome implementation barriers that have been identified locally.15 Effective and contextually relevant strategies that can be feasibly delivered within the resources and infrastructure available should be preferenced and employed to implement the intervention. Ongoing monitoring is also recommended to: i) ensure the implementation occurs as planned; ii) afford early identification and response to implementation or sustainability challenges; and iii) provide a mechanism for performance accountability.

If no effective and contextually appropriate implementation strategies are identified through this process, public health services may undertake, partner or commission an implementation trial to test the impact of an appropriate implementation strategy.

Conclusion

The decision tree is a simple resource intended to assist health service practice and to foster the conduct of practice relevant research. The tree has the potential to improve the impact of public health research by identifying opportunities where the enhanced alignment of research with the evidence needs of end-users is needed.

References 1. Indig D, Lee K, Grunseit A, et al. Pathways for scaling

up public health interventions. BMC Public Health. 2018;18:68.

2. Wolfenden L, Nathan N, Janssen LM, et al. Multi- strategic intervention to enhance implementation of healthy canteen policy: A randomised controlled trial. Implement Sci. 2017;12:6.

3. Hills A, Nathan N, Robinson K, et al. Improvement in primary school adherence to the NSW Healthy School Canteen Strategy in 2007 and 2010. Health Promot J Austr. 2015;26:89-92.

4. Oliver K, Innvar S, Lorenc T, et al. A systematic review of barriers to and facilitators of the use of evidence by policymakers. BMC Health Serv Res. 2014;14:2.

5. Tabak RG, Padek MM, Kerner JF, et al. Dissemination and implementation science training needs: Insights from practitioners and researchers. Am J Prev Med. 2017;52:S322-S9.

6. Yost J, Dobbins M, Traynor R, et al. Tools to support evidence-informed public health decision making. BMC Public Health. 2014;14:728.

7. Podgorelec V, Kokol P, Stiglic B, et al. Decision trees: An overview and their use in medicine. J Med Syst. 2002;26:445-63.

8. Titler MG, Kleiber C, Steelman VJ, et al. The Iowa model of evidence-based practice to promote quality care. Crit Care Nurs Clin North Am. 2001;13:497-509.

9. Wolfenden L, Yoong SL, Williams CM, et al. Embedding researchers in health service organizations improves research translation and health service performance: The Australian Hunter New England Population Health example. J Clin Epidemiol. 2017;85:3-11.

10. Milat A, Lee K, Conte K, Grunseit A, Wolfenden L, van Nassau F, et al. Intervention Scalability Assessment Tool: A decision support tool for health policy makers and implementers. Health Res Policy Syst. 2020;18(1):1.

11. Chambers D, Wilson PM, Thompson CA, et al. Maximizing the impact of systematic reviews in health care decision making: A systematic scoping review of knowledge-translation resources. Milbank Q. 2011;89:131-56.

12. Milat AJ, Bauman A, Redman S. Narrative review of models and success factors for scaling up public health interventions. Implement Sci. 2015;10(1):113.

13. Kitson A, Straus SE. The knowledge-to-action cycle: Identifying the gaps. Can Med Assoc J. 2010;182:e73.

14. Conte KP, Groen S, Loblay V, et al. Dynamics behind the scale up of evidence-based obesity prevention: Protocol for a multi-site case study of an electronic implementation monitoring system in health promotion practice. Implement Sci. 2017;12:146.

15. French SD, Green SE, O’Connor DA, et al. Developing theory-informed behaviour change interventions to implement evidence into practice: A systematic approach using the Theoretical Domains Framework. Implement Sci. 2012;7:38.

Correspondence to: A/Prof Luke Wolfenden, Hunter New England Population Health, Locked Bag 10, Wallsend, 2287 NSW; e-mail: [email protected]

© 2020. This work is published under http://creativecommons.org/licenses/by-nc-nd/4.0/(the “License”).

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Research

1 Cancer Prevention Fellowship Program, Division of Cancer Prevention, National Cancer Institute, Rockville, MD, USA

2 Herschel S. Horowitz Center for Health Literacy, School of Public Health, University of Maryland, College Park, MD, USA

Corresponding Author: Heather Platter, PhD, MS, National Cancer Institute, Division of Cancer Prevention, Cancer Prevention Fellowship Program, 9609 Medical Center Drive, Rockville, MD 20850, USA. Email: heather. platter@ nih. gov

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

Heather Platter, PhD, MS1,2 ; Katya Kaplow, BS2 ; and Cynthia Baur, PhD2

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 im- provement 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 cap- tured 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.

Keywords

health literacy, community health assessment, community health literacy assessment, systematic framework, public health

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 measur- ing and intervening to change people’s health literacy skills to measuring and changing professional, organization, and community- level practices and policies to address health liter- acy problems and barriers. The 2030 description aligns with rec- ommendations in the National Action Plan to Improve Health Literacy, which outlines ways to improve the nation’s health lit- eracy 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

472 Public Health Reports 137(3)Public Health Reports 00(0)2

Assessment of Adult Literacy3 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 liter- acy 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 col- lection, 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 stu- dents and practicing health professionals, and the Center for Health Literacy leads a statewide coalition. The CHLA frame- work, which is described elsewhere,11 allowed our team to cap- ture data on multiple dimensions of health literacy at the county and local coalition levels and across jurisdictions.

Previously, our team11 proposed that the community health assessment model used by public health departments and hospi- tals to gather important community health data in a geographi- cally defined area could be adapted for health literacy work.12

The framework has 7 steps that organizations can follow to col- lect 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 charac- terize 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 prac- tices.11 This study reports the results of qualitative analyses of our Maryland assessment in more detail using the adapted 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, popu- lation 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 updat- ing the interview guide, the team conducted semi- structured

Figure. Community Health Literacy Assessment framework.

Platter et al 473Platter et al 3

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 organi- zations, 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 partic- ipants 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 communi- ties. 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 organiza- tions, and nonprofit organizations, although not in any particular order. We used snowball sampling methods to identify addi- tional 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 tran- scribe 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 tran- script, 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 com- pared 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 inde- pendent coders (H.P., K.K.) coded 6 of the same interviews and compared codes, which were consistent. To further enhance reli- ability, 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 inter- preted results.

Results

We completed 57 interviews with participants from 56 organiza- tions 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 inter- views 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 com- bined activities and assets into 1 theme because we considered health literacy activities to be assets.

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

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

474 Public Health Reports 137(3)Public Health Reports 00(0)4

community outreach and educational materials, such as sharing health education print or digital materials to improve patients’ ability to manage their own health.

Another common activity and asset mentioned by partici- pants 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 par- ticipants did not specify a tool or technique for evaluation. Only 1 participant mentioned using the CDC Clear Communication Index14 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 repre- senting several counties said that “[e]veryone is using acronyms, [which is] so confusing.”

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 mate- rials in relation to health literacy. Participants from 8 counties mentioned a lack of advocacy for the importance of health liter- acy and the improvement of programs through implementing health literacy techniques and best practices.

Health Literacy Opportunities Participants identified 5 opportunities to improve health lit- eracy within their organization, community, or county (Table 4). Participants representing 21 counties discussed the need to increase public awareness of existing health pro- grams and services through improved outreach and by teach- ing better health information–seeking behaviors. Participants from organizations in 19 counties mentioned the need to bring health literacy into discussions at organizational meet- ings to raise awareness of the importance of health literacy in all aspects of the health care system. Participants

Table 2. Health literacy assets and activities reported by interviewees (N = 56), Maryland, 2018a

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.

Platter et al 475Platter et al 5

representing 19 counties also noted that increasing or improving current collaborations and partnerships to address health literacy was an opportunity to improve health literacy.

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

Table 3. Health literacy gaps reported by interviewees (N = 56), Maryland, 2018a

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.

Table 4. Health literacy opportunities reported by interviewees (N = 56), Maryland, 2018a

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.

476 Public Health Reports 137(3)Public Health Reports 00(0)6

staff to think twice, slow down, and use teach- back methods. We need the providers to improve their health literacy tech- niques.” 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 sys- tematically on community health literacy in a heterogeneous state that includes urban, suburban, and rural areas. The CHLA framework that the team created allows organiza- tions, 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 character- ize 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 impor- tance 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 evaluat- ing materials for health literacy, although only 1 participant mentioned using the CDC Clear Communication Index14 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 language15 and teach- back training16 for health care, public health, and other organizations that work with the public. Limited funds and no dedicated staff members available to conduct health lit- eracy–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 aware- ness of existing health programs. Participants indicated that they recognize the importance of internal work to edu- cate and train staff members and external partnerships to share resources and best practices and engage in advocacy.

Respondents in 19 counties discussed raising health liter- acy awareness at organizational meetings, which was also related to a gap noted in 8 counties about the lack of advo- cacy 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 mem- bers, 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 organi- zations 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 coun- ties 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 partici- pants from organizations responsible for strategic planning in the counties, even when the participant was not represent- ing 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 tech- niques, 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

Platter et al 477Platter et al 7

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 contribu- tions. This limitation, however, is the same for organiza- tional 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 pre- viously 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 practi- tioners, 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 depart- ments, 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 assess- ment measures because results can inform broader commu- nity 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 documenta- tion of health literacy efforts.

The Horowitz Center for Health Literacy intends to repli- cate this project to refine the data collection process, track changes in improvement efforts, and deepen our understand- ing of how community health literacy functions. We recom- mend that other teams replicate the CHLA framework to identify similar geopolitical health literacy assets and activi- ties, gaps, and opportunities. These assessments need to be repeated periodically before health literacy can be operation- alized 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.

Authors’ Note

The opinions expressed by the authors are their own, and this material should not be interpreted as representing the official viewpoint of the US Department of Health and Human Services, the National Institutes of Health, or the National Cancer Institute.

Acknowledgments

The authors acknowledge Neha Trivedi, PhD, MPH; Bridget Higginbotham, MPH; and Lauren Levy, BS, all former students from the University of Maryland, College Park, School of Public Health, for their contributions to instrument creation, data collection, and data analysis; and the participants who completed interviews.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

References

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2. US Department of Health and Human Services, Office of Disease Prevention and Health Promotion. National Action Plan to Improve Health Literacy. 2010. Accessed September 20, 2019. https:// health. gov/ our- work/ health- literacy/ national- action- plan- improve- health- literacy

3. Baer JD, Hsu Y. Highlights from the 2003 Maryland State Assessment of Adult Literacy. 2004. Accessed January 11, 2021. https://www. air. org/ sites/ default/ files/ SAAL_ MD_ web_ 0. pdf

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5. Centers for Disease Control and Prevention. Behavioral Risk Factor Surveillance System 2016 modules by state. 2017. Accessed September 20, 2019. https://www. cdc. gov/ brfss/ questionnaires/ modules/ state2016. htm

6. Agency for Healthcare Research and Quality. AHRQ health literacy universal precautions toolkit. 2019. Accessed February 23, 2019. https://www. ahrq. gov/ health- literacy/ quality- resources/ tools/ literacy- toolkit/ index. html

7. Brach C, Keller D, Hernandez LM, et al. Ten attributes of health literate health care organizations. National Academy of Medicine. 2012. Accessed October 14, 2020. https:// nam. edu/ perspectives- 2012- ten- attributes- of- health- literate- health- care- organizations/? gclid= CjwK CAjw w5r8 BRB6 EiwA rcck C0yGE_ IrKOU- Pdb- 0XmkBYpf9Rn5mzlw- XyVT cZpL iltk RMmi G7KsBoC- 1cQAvD_ BwE

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11. Platter H, Kaplow K, Baur C. Community health literacy assessment: a systematic framework to assess activities, gaps, assets, and opportunities for health literacy improvement. Health Lit Res Pract. 2019;3(4):e216-e226. doi: 10. 3928/ 24748307-

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12. Centers for Disease Control and Prevention. What is a community health assessment? What is a community health improvement plan? 2015. Accessed September 20, 2019. https://www. cdc. gov/ stltpublichealth/ cha/ plan. html

13. Hsieh H- F, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277-1288. doi: 10. 1177/ 1049 7323 05276687

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8. Rudd RE, Oelschlegel S, Grabeel KL, Tester E, Heidel E. HLE2: The Health Literacy Environment of Hospitals and Health Centers. Harvard T.H. Chan School of Public Health; 2019. Accessed October 14, 2020. https:// files. eric. ed. gov/ fulltext/ ED606503. pdf

ORIGINAL RESEARCH published: 19 February 2021

doi: 10.3389/fpubh.2021.595786

Frontiers in Public Health | www.frontiersin.org 1 February 2021 | Volume 9 | Article 595786

Edited by:

Hajo Zeeb,

Leibniz Institute for Prevention

Research and Epidemiology

(LG), Germany

Reviewed by:

Lira Pi,

BioStat Solutions, Inc. (BSSI),

United States

Lauren Houghton,

Columbia University, United States

Hande Gencer,

Leibniz Institute for Prevention

Research and Epidemiology

(LG), Germany

*Correspondence:

Carmen E. Guerra

[email protected]

Specialty section:

This article was submitted to

Life-Course Epidemiology and Social

Inequalities in Health,

a section of the journal

Frontiers in Public Health

Received: 17 August 2020

Accepted: 26 January 2021

Published: 19 February 2021

Citation:

Guerra CE, Verderame E,

Nicholson A, Wan L and Brooks AD

(2021) A Plan-Do-Study-Act

Approach to the Development,

Implementation and Evaluation of a

Patient Navigation Program to Reduce

Breast Cancer Screening Disparities in

Un- and Under-Insured, Racially and

Ethnically Diverse Urban Women.

Front. Public Health 9:595786.

doi: 10.3389/fpubh.2021.595786

A Plan-Do-Study-Act Approach to the Development, Implementation and Evaluation of a Patient Navigation Program to Reduce Breast Cancer Screening Disparities in Un- and Under-Insured, Racially and Ethnically Diverse Urban Women Carmen E. Guerra 1,2,3*, Emily Verderame 2, Andrea Nicholson 4, LiYea Wan 2 and

Ari D. Brooks 2,5

1Department of Medicine, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, United States, 2 Abramson Cancer Center, University of Pennsylvania, Philadelphia, PA, United States, 3 Leonard Davis Institute for Health

Economics, University of Pennsylvania, Philadelphia, PA, United States, 4MD Anderson Cancer Center at Cooper, Cooper

University Hospital, Camden, NJ, United States, 5Department of Surgery, Perelman School of Medicine, University of

Pennsylvania, Philadelphia, PA, United States

Introduction: For the over 28 million Americans without health insurance, there is a great

need to develop programs that help meet the health needs of the uninsured population.

Materials and Methods: We applied the Plan-Do-Study-Act (PDSA) quality

improvement framework to the development, implementation, and evaluation of a breast

cancer screening navigation program for un- and under-insured women.

Results: Six critical steps emerged: (1) obtain program funding; (2) navigator training;

(3) establish a referral base network of community partners that serve the un- and

under-insured women; (4) implement a process to address the barriers to accessing

mammography; (5) develop a language- and culturally-tailored messaging and media

campaign; and (6) develop measures and process evaluation to optimize and expand

the program’s reach.

Discussion: A Plan-Do-Study-Act approach allowed identification of the key

elements for successful development, implementation and optimization of a breast

cancer screening navigation program aimed at reaching and screening un- and

underinsured women.

Keywords: breast cancer screening, neoplasm, patient navigation, Plan-Do-Study-Act, uninsured, low SES

INTRODUCTION

Breast cancer is the most common cancer and second leading cause of cancer death among women in the United States (U.S.). Despite a reduction in breast cancer mortality by 40% from 1989 to 2016, breast cancer continues to pose a significant public health burden (1). It is estimated that in 2020, there will be approximately 276,480 cases diagnosed in women and about 42,170 deaths

Guerra et al. Breast Cancer Screening Navigation Program

due to breast cancer in the U.S. (1). Furthermore, the rate of decline in death rates has not been equitable. Breast cancer death rates are approximately 40% higher in Black women compared to white women, despite similar incidence rates (2). Racial and ethnic minority groups in the U.S are more likely to be medically underserved and live in poverty compared to their White counterparts (2). Racial disparities in breast outcomes exist due to social, economic, and cultural factors such as socioeconomic status, employment status; and limited access to healthcare, safe housing and affordable nutritious food (2). Although breast cancer screening reduces breast cancer mortality and thereby remains the cornerstone of breast cancer control (3), screening remains underutilized in the U.S. (4). In 2018, 73% of women aged 50–74 years reported having had a mammogram within the past 2 years (5). However, according to the Center for Disease Control (CDC), several subpopulations of patients have lower screening rates (6). In particular, only 30% of uninsured women over age 40 had undergone a screening mammography within the past 2 years compared to 69.7% of insured women (6). Uninsured women are also 2.6 times more likely to be diagnosed at a later stage of disease and 60% more likely to die from breast cancer compared to women with health insurance (7). While there have been recent improvements in access to insurance in the U.S., 28.5 million individuals living in the U.S., or 8.5% of the population, did not have health insurance at any point during 2018 (8). Regardless of race/ethncity, for Americans without health insurance, there is a great need to develop programs that help meet the health needs of the uninsured population.

Patient navigation programs have been reported to reduce barriers to care and improve access to services. Navigation programs have also been shown to improve the quality measures including increasing the receipt of timely screening and diagnostic services and treatment after a suspicious finding, adherence to treatment, and patient satisfaction (9). Furthermore, such programs are cost-effective (9). In order to encourage others to design and implement navigation programs in diverse, un- and under-insured communities that meet the needs of their communities, we describe the use of the Plan-Do-Study-Act (PDSA) Framework, first proposed by W. Edwards Deming and popularized by the Institute for Health Care Improvement (10), to the process of developing a breast cancer screening navigation program for un and under-insured women, its key successes, as well as the challenges and how these challenges were overcome. This project and all procedures performed in studies involving human participants were in accordance with the ethical standards and approved by the University of Pennsylvania’s Institutional Review Board (IRB).

MATERIALS AND METHODS

Below we describe the development of the Penn Medicine Breast Health Initiative (PBHI), a breast cancer screening navigation

Abbreviations: ACC, Abramson Cancer Center; FQHC, Federally Qualified

Health Center; HPC, Health Promotion Council; DOH, Department of Health;

LCWH, Ludmir Center for Women’s Health; MPH, Master of Public Health;

NBCCEDP, National Breast and Cervical Cancer Early Detection Program; PBHI,

Penn Breast Health Initiative; PDSA, Plan, Do, Study, Act.

program, created to increase access to free, high-quality mammography for un- and underinsured women and reduce breast cancer mortality among this underserved group, using the PDSA framework. The Initiative is based at the Abramson Cancer Center (ACC) of the University of Pennsylvania, a National Cancer Institute Comprehensive Cancer Center, located in Philadelphia. The ACC is also home to the Rena Rowan Breast Center and the Pennsylvania Hospital Integrated Breast Center which are accredited by the American College of Surgeons National Accreditation Program for Breast Centers. We first describe the needs assessment that led to the program’s creation, then apply the PDSA model to establishing, evaluating and optimizing the program.

Needs Health Assessment Understanding the health need from the perspective of the community is the critical step to designing a successful navigation program. It informs the purpose and goals of the navigation program. Similar to national data (6), data from the Public Health Management Corporation’s Southeastern Pennsylvania Household Survey indicated that, in 2015, nearly four in ten (38%) uninsured women in Philadelphia between the ages of 50–74 reported not having a mammogram in the past year; this figure represents an estimated 462,200 women (11). The lower screening rates among uninsured women contribute to Philadelphia’s breast cancer mortality rate of 28.2/100,000 which is significantly higher than the state and national rates of 22.8/100,000 and 21.5/100,000, respectively (12). The un- and under-insured population in Philadelphia, thus, represented one of the populations with the greatest need for interventions to increase access to screening mammography.

Plan-Do-Study-Act Framework There are multiple steps to developing a successful patient navigation program (13). Using the Plan-Do-Study-Act (PDSA) Framework (10), we discuss several critical components to the development of a breast cancer screening patient navigation program for diverse, un- and under-insured populations. In the “Plan” stage, the critical elements are: (1) securing the funding to establish a cost-free screening mammography program; (2) selection, training and defining the functions of the breast cancer screening navigator; and (3) establishment of a network of community partners that serve the un and under-insured and provide a referral base. The “Do” stage is focused on the implementation of a navigation process to address the barriers to accessing mammography including using language and culturally-tailored messaging and media campaign. The “Study” stage is defined by tracking enrolled patients and evaluating program measures that include completion of screening and diagnostic services and, then, in the “Act” stage, optimizing the program to expand the reach of the program to serve greater proportion of un- and under-insured women.

Development of a Breast Cancer Screening Navigation Program In the “Plan” stage, the critical elements are: (1) securing the funding to establish a cost-free screening mammography program; (2) selection, training and defining the functions of

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Guerra et al. Breast Cancer Screening Navigation Program

the breast cancer screening navigator; and (3) establishment of a referral network of community partners that serve the health needs of un and under-insured women.

Securing the Funding to Establish a Cost-Free Screening Mammography Program The PBHI program costs include: (1) patient care costs for screening and diagnostic mammography, breast ultrasounds, office visits and biopsies which result from both professional and facility fees; (2) patient navigator salary, benefits and training costs; (3) program costs include routine administrative costs such telephone services, mail and postage, program promotional and educational materials, as well as the costs to overcome patient barriers including transportation and interpreters. A combination of contractual, grant and institutional funding covered the total costs of the program as described below.

In 2014, the ACC became a designated Pennsylvania Department of Health (DOH) Healthy Woman Program site. The Pennsylvania DOH Healthy Woman Program is funded by the CDC National Breast and Cervical Cancer Early Detection Program (NBCCEDP), a nationwide, comprehensive public health program with the mission of increasing access to breast and cervical cancer screening for women who are medically underserved. Established in 1990, one of the objectives of the program is to target the racial/ethnic disparities in screening, diagnosis, and treatment of breast and cervical cancers. The program provides funding in all 50 states, the District of Columbia, 6 US territories, and 13 American Indian/Alaska Native tribes or tribal organizations. Program sites are allocated slots based on the demonstrated need in their communities. Many large metropolitan cities have dozens of BCCEDPs to meet the needs of their large un- and underinsured populations. Of the 1,309,350 women undergoing breast screening or diagnostic services through NBCCEDP between July 2013 and 2018 across the U.S., almost 70% were from racial/ethnic minority groups (14). The NBCCEDP strategies to increase screening and breast cancer treatment among racial/ethnic minorities include reminders for patients, culturally-tailored programs that address specific beliefs or knowledge gaps, and programs addressing financial or logistical barriers to screening (15). An analysis of the NBCCEDP estimated that the number of life-years saved between 1991 and 2006 was 100,800 compared with no program and 369,000 life-years compared with no screening (16).

Through a combination of this contract and a portfolio of grants including from the Susan G. Komen Foundation and other foundations as well as institutional funding from the ACC, the program has been able to provide an increasing number of free breast screening services to eligible women. The ACC and the Rena Rowan Breast Center provided additional funding for personnel costs and Penn Medicine has provided support through office space and translation services.

By contract with the Pennsylvania DOH, Medicaid rates (and currently Medicare rates) were the maximum reimbursable rates. The PBHI established a billing contract with Penn Medicine

that allowed the program to charge the Medicaid and Medicare- adjusted rates for all breast services provided by the PBHI (rather than commercial rates) which allowed the program an even greater capacity to support and serve the greatest number of women possible.

Patient Navigator Selection, Training, and Functions The PBHI navigator is a Masters of Public Health (MPH)-trained individual who acts as bridge between the community and the health care system. The PBHI navigator had to be proficient at creating community partnerships that permit the identification of un- and under-insured women in communities, lead and participate in community educational and outreach events and navigate patients through a complex health care system. The navigator received further training at the Harold P. Freeman Patient Navigation Institute in New York, New York, which focuses on teaching skills to maximize retention, diagnostic and treatment resolution rates, cancer navigation best practices and the conduct of navigation research (17).

The primary function of the navigator is to create a referral base from community partners and navigators and facilitate access to screening, diagnostic or treatment care by addressing language, literacy and cultural barriers, provide emotional support to patients to reduce fear and improve patient–provider communication. To overcome communication challenges posed by differences in language, culture and limited interactions with health care, communication via the referring community navigators and partners was determined to be most effective to establish contact with patients.

The navigator also coordinates the administration, financial and reporting responsibilities of the program. The navigator collaborates with radiology departments to implement the program’s enrollment protocols into the registration and check- in process. In addition, the navigator also works with the financial department to create corporate guarantor accounts and prevent the direct billing of services rendered to patients. It is imperative to avoid directly billing patients which can create a record of debt for patients and even jeopardize their credit records. Finally, the navigator is responsible for maintaining detailed records to allow for call backs for screening or diagnostic testing when medically necessary, for administrative reporting to grant sponsors and for internal quality improvement and program evaluation purposes.

Establishing a Referral Base From a Network of Community Partners That Serve the Health Needs of Un- and Under-Insured Women Since un- and under-insured patients are unlikely to seek a screening mammography due to its prohibitive costs and lack of access, it was critical for the navigator to develop a robust network of community partners which serve the un- and underinsured communities in the region. Since a portion of the target population is already accessing primary care through Federally Qualified Health Centers (FQHCs), the PBHI partners with multiple primary care clinics at FQHCs and

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TABLE 1 | Penn Medicine breast health initiative community partner network.

Organization Type of

organization

Organization description Location Primary population

served

Health Promotion Council Non-profit An affiliate of Public Health Management Corporation

(PHMC)

Center City West Hispanic/Latinx

Southeast Asian Mutual

Assistance Association

Coalition (SEAMAAC)

Non-profit One of the oldest and largest refugee founded agencies

in the region

South Philadelphia Asian

Congreso de Latinos Unidos Non-profit,

FQHC

FQHC in partnership with PHMC Fairhill Hispanic/Latinx

BEBASHI Non-profit Services for breast health, sexual health and hunger relief Kensington Black

Health Annex FQHC An affiliate of Family Practice & Counseling Network, a

program for Resources of Human Development

Southwest

Philadelphia

African, White, Black

National Black Leadership

Initiative on Cancer (NBLIC)

Non-profit Greater Philadelphia Chapter, launched as the first

minority outreach project of the National Cancer Institute

under the leadership of Louis W. Sullivan, M.D.,

Morehouse School of Medicine President Emeritus and

Former Secretary of the US Dept of Health and Human

Services

Poplar Black

African Family Health

Organization (AFAHO)

Non-profit

community

based

organization

A non-profit organization that connects African and

Caribbean immigrants and refugees to health care

Belmont African and Caribbean

immigrants and refugees

Puentes de Salud Non-Profit A non-profit focused on health, education and

community building

Center City Hispanic/Latinx

Greater Philadelphia Health

Action (GPHA)

Non-profit A non-profit to increase access to health care for un and

underinsured families

12 locations

throughout the

Greater Philadelphia

region

White, Black, Asian,

Hispanic/Latinx

Maria de los Santos Health

Center

Community

Health Center

Part of Delaware Valley Community Health, Inc., the

largest provider of primary health care services to Latinos

in Philadelphia

Fairhill Hispanic/Latinx

Norristown Regional Health

Center

FQHC Part of Delaware Valley Community Health, Inc.,

Montgomery County’s first FQHC providing health,

behavioral and dental services to communities

Norristown Hispanic/Latinx, African

American

Ludmir Center For Women’s

Health

Community

Health Clinic

Based at Penn Medicine’s Pennsylvania Hospital and a

Healthywoman program provider for obstetrics and

gynecology services

Washington

Square/Center City

East

Hispanic/Latinx

Rising Sun Health Center Non-profit Program of Philadelphia Health Management

Corporation

Olney Hispanic/Latinx

Cambodian Association of

Greater Philadelphia

Non-profit Philadelphia’s foundation of social, health and education

programs

Olney Cambodian

Horizon House Health Center Primary Care

Center

First behavioral health care center in Philadelphia to

integrate medical care and behavioral health

Fairmount White, Black, Asian,

Hispanic/Latinx

Philadelphia Corporation for

Aging (PCA)

Private,

non-profit

One of the largest non-profit organizations in the region Fairmount Seniors, people with

disabilities

non-profit community organizations to identify and refer the target population for breast cancer screening services (Table 1). During the time this program was planned, over 300,000 patients made visits to Philadelphia area FQHCs and other community health centers with 97% of patients reporting incomes <200% of the Federal Poverty level (18). Subsequently, the program has established and maintained over a dozen partnerships with FQHCs in the Philadelphia area which have been critical in the development of the program’s referral base and reaching the target population.

On the other hand, many un-and underinsured women are not accessing care at all. To reach this portion of our target population, the PBHI partners with community-based, non- profit organizations that employ community lay navigators that can identify and refer patients to the program. One example of such a partner organization is the Health Promotion Council of Southeastern Pennsylvania (HPC), an affiliate of the Philadelphia Health Management Corporation, a non-profit corporation that conducts community-based outreach, education and advocacy for vulnerable populations. Through a subcontract funded by

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the Susan G. Komen National Foundation, HPC employed two community navigators that helped to identify women in need of breast cancer screening in the community and linked these women with the PBHI navigator. These agencies organize many different free community events which helps the HPC community navigators identify women overdue for breast cancer screening and connect them with the PBHI navigator. The navigator also attends and leads outreach and educational events, health fairs and breast symposiums regularly to engage women in need of breast health services. The navigator follows up with these women by phone to enroll patients in the program and schedule screenings.

The navigator also receives referrals from word of mouth, as a result of marketing and advertising efforts and through internal daily requests via other Penn Medicine health care providers and employees such as patient service associates, radiology managers, when patients are deemed un- and underinsured. Referrals are made through a HIPAA-compliant form containing patient’s contact information that is securely faxed to the navigator.

Establishing a Navigation Process to Address the Barriers to Accessing Mammography We developed a step-by step process for breast cancer screening navigation (Appendix 1) to outline the “Do” component of the PDSA cycle. The navigator must first confirm patient eligibility for enrollment in the PBHI. Patients must be of the guideline-recommended screening age and due for a screening mammogram or be experiencing a new breast problem, such as a breast lump, nipple discharge, breast mass or breast pain. To be enrolled in the Healthy Woman Program, patients must be a Pennsylvania resident, un-insured or under-insured (i.e., have a high co-pay or deductible they cannot afford) and meet household income guidelines (at or below 250% of the Federal Poverty Income level).

Un- and underinsured patients who are ineligible for the Healthy Woman Program and in need of breast services are enrolled in the PBHI and their services are covered using alternative grant or philanthropic funding. The additional funding also allows the program to serve New Jersey residents who are within the ACC’s catchment area, but do not qualify for the Pennsylvania-funded program and to males experiencing a breast problem.

Over half (58%) of the PBHI’s patient population speaks a language other than English (Table 2). To bridge language and communication barriers, the navigator has a dedicated phone line that patients can contact directly and uses a hospital- provided translational service when communicating with non- English speaking patients over the phone. In-person language interpreters and on-demand video interpretation via Martii devices are available to non-English speaking patients at their appointments. To further address language barriers, program promotional materials and breast health educational materials are available in a variety of languages including Spanish, Mandarin, and Vietnamese. Result and reminder letters are also translated for non-English speaking patients.

TABLE 2 | Demographics (n = 1,974).

Age, mean (s.d.) 48 (9.7)

Age distribution

<40 15%

40–49 45%

50–64 37%

65+ 3%

Race

White 44%

Black 27%

Other 17%

Unknown 12%

Ethnicity

Hispanic/Latino 53%

Non-Hispanic/Latino 36%

Unknown 11%

Language

English 42%

Non-English 58%

Spanish 78%

Mandarin 11%

Other 11%

Likewise, cultural barriers are prominent among the PBHI population and important to address. Differences in cultural beliefs between the provider and the patient affect how patients perceive medical information and the concept of health and illness in general. The PBHI navigator works closely with our diverse group of partner organizations to provide culturally-tailored messages and appropriate care. To improve cross–cultural communication, the navigator expresses any patient concerns to the point of contact from the patient’s referring organization and seeks guidance about how to more effectively communicate with patients in light of differences in cultural beliefs.

Language and cultural barriers are linked with low health literacy (19). In addition to having program and educational materials in various languages, the PBHI ensures that all information is written for individuals with lowest literacy levels (6–8th grade) in order to effectively reach our target population. The navigator also offers patients help with completion of any forms needed to access care.

Transportation was also reported as a barrier by PBHI patients. To address transportation barriers, the PBHI offers public transportation vouchers to help patients and their caregiver travel to and from appointments.

Patients frequently report fear of a cancer diagnosis as a barrier in accessing care, especially after receiving an abnormal mammogram result. The PBHI navigator responds to statements about fear with information, emotional support and encouragement to patients. The navigator also provides patients with her direct land and cell phone numbers which allows patients to reach the navigator at their convenience if they had any questions or concerns.

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In an effort to best accommodate patients, minimize travel and maximizing convenience, the program’s services are available to patients at a variety of Penn Medicine’s community radiology locations in the Greater Philadelphia region including Pennsylvania Hospital (Center City), The PerelmanCenter (West Philly), Radnor Hospital, Valley Forge, Bucks County,Woodbury Heights, NJ and Cherry Hill, NJ.

Furthermore, in addition to offering cost-free breast cancer screening services, the navigator offers referrals for free cervical cancer screenings at the Ludmir Center for Women’s Health (LCWH), a Penn Medicine, Pennsylvania’s DOH Breast and Cervical Cancer Early Detection Program/HealthyWoman program provider located at Pennsylvania Hospital, that offers gynecology and obstetrics services. This partnership involves close communication between the PBHI navigator and LCWH staff to ensure that new and existing un- and underinsured patients are receiving comprehensive women’s health services.

One of the most important functions of the navigator and a measure of success of a breast cancer screening navigation program is follow up of patients with abnormal results to assure that they receive the necessary follow up diagnostic testing. The navigator has a detailed protocol for following up patients with abnormal results, that begins by contacting the program co- director via the electronic record (EPIC) with the imaging result and schedules further radiologic workup or an office visit for each patient. The navigator also generates daily work queues from EPIC to identify patients enrolled in the program who have abnormal screening results. The radiology departments also have a dual process for following up abnormal findings that also applies to the patients of our program. This includes an attempt to call the patient, a mailed letter notifying the patient to return for additional imaging with a telephone number to schedule the appointment, a reminder letter after 15 days as well as a second reminder letter and a letter to the referring physician after 30 days. If still unsuccessful in reaching the patient after six attempts, the navigator reaches out to the referring clinic, provider or community partner to ensure that the patient is not lost to follow up. For example, the PBHI partners with community navigators at the HPC who are available to visit patients’ homes, if needed, to provide further education and explain the importance of follow-up studies to patients.

Patients who complete a diagnostic mammogram receive the results immediately after their test directly from the radiologist reading the studies, using translation services if necessary. Patients that require a biopsy are scheduled for appropriate follow-up studies immediately after receiving their results, and, if needed, arrangements are made so that they are accompanied by our partners’ community navigators. This removes any uncertainty regarding appropriate follow-up and contact.

If a woman is diagnosed with breast cancer, the PBHI also offers assistance with enrolling women in the state health insurance plan. Immediately preceding a patient’s office visit with a new diagnosis of breast cancer, the navigator initiates the first steps in obtaining coverage to minimize delays in receiving treatment. The navigator works with the Pennsylvania County Assistance Offices, chooses the office that is in closest proximity to the patient’s home and gathers all the necessary documents

that are needed to produce an effective application for obtaining coverage. Upon diagnosis, women are enrolled in the State Breast and Cervical Cancer Treatment Program and, if ineligible, for example if the woman is undocumented, then she is enrolled in Emergency Medical Assistance. The navigator also makes additional referrals to the ACC’s Financial Advocacy team that determines if the patient may be eligible to enroll in a health insurance plan through the marketplace. After securing health coverage, the navigator transitions the patient into treatment at the ACC where the Initiative’s co-director, and the ACC’s team of cancer specialists and nurse navigators continue to support the patient throughout their treatment.

Developing Culturally-Tailored Messaging and a Media Campaign Another important component of the “Do” stage in developing this program was the development of a multilingual messaging and media campaign tailored to the needs of the diverse patients served by the program. According to the Pew Charitable Trusts’ Philadelphia Research Initiative, in the last 10 years there has been significant growth in Hispanic communities in Philadelphia (20). Moreover, 319,310 of Philadelphia residents speak a language other than English with the most common foreign language being Spanish (20). Limited English proficiency is a major barrier in the delivery of medical care among the uninsured: women who speak Spanish are less likely to be screened for breast cancer (21). In an effort to develop culturally- tailored messaging to decrease breast screening disparities among the Latina population in our community, the PBHI partners with the American Cancer Society and Univision 65 to hold an annual, “Amate a ti Misma” or a “Love Yourself,” campaign to encourage women to undergo an annual screening mammography. The campaign messages, delivered in Spanish by Univision newscasters, focuses on an all-day screening event located at the Pennsylvania Hospital. The message addresses the prevalent cultural beliefs in Latin cultures rooted in Marianismo, specifically Familismo, that encourage women to care for other members of her family and dissuade Latinas from putting their needs first. The message asks Latinas to love themselves by undergoing a mammogram. The month leading up to the event, Univision airs public service announcements which include the PBHI navigator’s phone number. Patients interested in attending call the navigator to schedule an appointment. If women are unable to attend the event, they are scheduled for another more convenient day and time.

Program Evaluation and Optimization Patient navigation process measures are carefully captured by the patient navigator to allow us to “Study” the program and then “Act” to more effectively and efficiently accomplish the goals of the program. The program tracks the number of patients referred for services, appointments made and kept, type of service(s) rendered and their date, screening results, follow up recommendations, demographic information (race, ethnicity, age, zip code, city and state, insurance status), referral information (for breast cancer screening and treatment services and for cervical cancer screening), navigation services received,

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TABLE 3 | Mammography results by breast imaging reporting and data system (BI-RADS) category (n-1,974 unique patients).

BI-RADS Screening

mammogram

(n = 1,761)

Screening mammograms with

incomplete follow-up

(n = 11)

Diagnostic

mammogram

(n = 654)

Diagnostic mammograms with

incomplete follow-up

(n = 31)

Cat 0 – Incomplete Exam 167 7 16 5

Cat 1 – Negative 1,194 – 123 –

Cat 2 – Benign 363 – 287 –

Cat 3 – Probably Benign 15 4 118 22

Cat 4 – Suspicious 19 – 95 4

Cat 5 – Highly Suspicious 3 – 15 0

TABLE 4 | Stages of breast cancer diagnosed (n = 25).

Stage n

0 3

I 6

II 7

III 6

IV 3

and barriers addressed (including transportation and language support), among others (this data not shown). The Initiative also tracks patient outcomes including mammogram and biopsy results, time to diagnostic resolution, cancer diagnoses, stage of cancer at diagnosis and cancer treatment (some of this data is discussed below and shown in Tables 3, 4).

Finally, patients enrolled in the HealthyWoman program are required to complete the Pennsylvania DOH HealthyWoman Program enrollment forms before appointments. Patients complete the forms at check-in and the radiology check-in staff is required to fax the forms to the navigator and scan the form in the patient’s electronic medical record. The navigator later enters all forms into the DOH’s data management system, Med- IT, a requirement for reimbursement of services rendered. Med- It is a web-based health screening information database system that includes demographic information, automatic eligibility computation, billing and much more. The navigator is able to query the Med-IT database for clients by provider reports, billing reports and demographic reports, which allows the evaluation of the HealthyWoman program’s data separately.

The Initiative measured patient satisfaction in an initial subset of 90 patients that enrolled in the program using an adapted, previously published instrument (22). The adapted instrument which was made available via a translator in the patient’s native language, consists of 9 items with a 5-point Likert response scale with anchors very satisfied to very dissatisfied. The mean scores for each of the 9 items ranged from 4.68 to 4.95 out of amaximum of 5.00 indicating that patients were generally very satisfied with the services offered by the program (Table 5).

The ability to capture and analyze all of these measures allowed us to reflect and innovate (“Act”) to optimize the program and more effectively and efficiently reach its goals of

TABLE 5 | Patient satisfaction with patient navigation services (n = 90)*.

For each problem, indicate whether you were

very satisfied (very happy), a little satisfied

(happy for the most part), or not satisfied (not

happy) with the help you received from your

navigator(s).

Score

1. Making medical appointments 4.95

2. Getting results of tests you had 4.80

3. Dealing with financial concerns related to getting

the care you need

4.84

4. Getting transportation to the doctor’s office 4.72

5. Giving you emotional support 4.86

6. Dealing with fears related to your health issues 4.91

7. Getting the health information you need 4.88

8. Understanding the medical tests you got 4.68

9. Dealing with doctors, nurses, and other health

care workers who do not speak your language

4.92

*Adapted from Patient satisfaction with logistical aspects of navigation (PSN-L) scale (20).

increasing access to screening and diagnostic mammography and ultimately reduce the burden of breast cancer among un- and under-insured women. Our multidisciplinary team met regularly to map and measure the program’s processes, identify barriers to accessing the program and redefine our work. The PDSA model allowed us to strengthen the program over time by allowing us the ability to reflect on populations that we were not able to initially reach and then adjust the program to better serve those populations. For example, initially, there were women who needed screening or diagnostic mammography, but who did not meet the eligibility for the Pennsylvania DOH Healthy Woman Program because they fell out of the eligible age range and resided in an adjacent state. This led our team to apply for a Susan G. Komen grant that allowed us to serve these women. In another example, the PDSA model allowed us to recognize that the program was not fully reaching Asian women. Consequently, we sought to develop additional partnerships with community organizations that serve the Asian community and grant support to expand our outreach and engagement with this community. Below we describe some of the program’s results and key successes that resulted from the

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iterative application of the PDSA cycle to the PBHI as well as program challenges.

RESULTS

A key success is that over the past 5 years since the program’s inception (June 2014–June 2019), the Initiative has navigated 1,974 racially and ethnically diverse women providing over 2,000 high quality breast services to women who were previously unable to access mammography (Table 2). Table 2 also shows the diversity of the race and ethnicity of the women enrolled in the program: 10% Asian, 27% Black, 7% other, 12% Unknown, 44% White; 53% Hispanic. Over half (58%) of women who participate in the program speak a language other than English, with 78% Spanish as the most common, 11% speak Mandarin; 11% speak other languages. Similar to prior research, this work shows that breast cancer screening navigation programs for uninsured women are effective and lead to increased screening rates and the detection of previously undetected breast cancers (23).

Table 3 demonstrates that among 1,974 unique patients, the program delivered 1,761 screening and 654 diagnostic mammograms. Among these 11 patients who completed screening mammograms and 31 patients who completed diagnostic mammograms did not complete follow-up diagnostic images. Despite multiple attempts by our navigator by telephone and mail, via the Health Promotion Council Navigators and the radiology providers and/or staff, these women were lost to follow up. In a few of these cases, familymember or community partners or navigators confirmed that the woman refused additional images, sought care elsewhere or returned to her native country, but the reason for incomplete studies was unknown for the majority of patients and they were classified as lost to follow up.

Another important success of the program is the diagnosis of breast cancer in 25 patients – all of whom were enrolled in health insurance and treated at the ACC (Table 4). The majority of these were diagnosed at a localized stage and that all patients have received high quality treatment at and support from an NCI-Comprehensive Cancer Center.

As shown in Table 5, yet another success is the high patient satisfaction reported among an initial subset of women enrolled in the programwhich wasmeasured using the Patient Satisfaction with Logistical Aspects of Navigation Scale (20). However, this subset represents a group that was slightly older and had half the proportion of Hispanic patients than the larger cohort we report here (data not shown). Therefore, the satisfaction results may not be generalizable to the results of the cohort reported here.

DISCUSSION

For the over 28 million Americans without health insurance (8), hospitals often represent their only source of care. Consequently, there is a great need to develop programs that help meet the health needs of the uninsured populations and deliver high quality care. We describe the development of a program that could be replicated to meet the breast cancer screening needs of

un- and under-insured women. The application of the Plan-Do- Study-Act quality improvement framework to the development, implementation, and optimization of a breast cancer screening navigation program for racially and ethnically diverse un- and under-insured women and outline the critical elements to guide this work. Among the critical steps ascertained through this process are: procurement of program funding from the DOH, grants and philanthropic sources; training of a navigator in the establishment of a referral network of community partners that serve the un and under-insured; establishment of a navigation process that can overcome barriers to screening and care; design a language and culturally-tailored messaging and media campaign; and establishment of clear process measures and evaluation that can further inform the optimization of the program.

The Penn Medicine Breast Health Initiative was created using this framework and this analysis summarizes the program’s reach and impact. In the first 5 years of this program, it reached almost 2,000 women and identified 25 cases of breast cancer. Among the 25 women, only three were identified at stage 4. All 25 women were enrolled in health insurance and provided with high quality care at an NCI comprehensive cancer center. Patient satisfaction with the program, measured in a small subset of 5% of patients, was high.

The major challenges to establishing a breast cancer screening navigation program for un- and under-insured diverse patients include securing the funding for the program’s operating support which includes the navigator salary, benefits and training which can be secured through grant, philanthropic and/or institutional funding. There are also logistical challenges to reaching this difficult-to-reach population both before engaging in the program and after for follow up care. This population generally has transient phone and sometimes housing access. Traditional methods of communication by telephone and mail fail these individuals. During situations where patients have an abnormal finding and require additional follow up, the navigator works with the referring center that women trust and, at times, community navigators, to locate the patient. Potential future strategies for reaching women might include contacting them at their place of employment or other faith-based and non-faith based community organizations. There is also the challenge of securing insurance for patients in a timely manner once they are diagnosed with cancer. This challenge can be overcome assigning a case worker or financial advocate to the patient and having this individual work closely with the navigator who already has an established relationship and trust with the patient. Furthermore, under the Protecting Access to Medicare Act of 2014, in order to expedite insurance coverage and obtain access card information for any patients enrolled in emergency medical assistance, the navigator must also complete a waiver to allow the navigator to retrieve the patient’s coverage information on the patient’s behalf.

Despite these challenges, the BCCEDP program provides funding to meet the breast cancer screening needs of un- and under-insured women. We have demonstrated that the Plan- Do-Study-Act quality improvement framework can be used to develop, implement, and optimize a breast cancer screening navigation program that can identify and reduce the burden of breast cancer in women at risk.

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Guerra et al. Breast Cancer Screening Navigation Program

DATA AVAILABILITY STATEMENT

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

ETHICS STATEMENT

The studies involving human participants were reviewed and approved by University of Pennsylvania Institutional Review Board. Written informed consent for participation was not required for this study in accordance with the national legislation and the institutional requirements.

AUTHOR CONTRIBUTIONS

All authors take responsibility for the manuscript, have directly participated in the planning, development, writing of the article, read and approved the final version, and consent to our names on the manuscript. CG have full access to all aspects of the review and writing process and take final responsibility for the paper.

FUNDING

The Penn Medicine Breast Health Initiative is supported from the Pennsylvania DOH’s Breast Cancer and Early Detection/Healthy Woman Program as part of the National

Breast and Cervical Cancer Early Detection Program (NBCCEDP), Susan G. Komen Foundation National, Susan G. Komen Foundation Philadelphia, the Allergan Foundation, the First Hospital Foundation, the Harrison Memorial Fund, Brander Beacons Cancer Research Foundation, Holman Enterprises Community Grants program, Penn Medicine Cares Grant Program, the Rena Rowan Breast Center, and the Abramson Cancer Center.

ACKNOWLEDGMENTS

The authors also are grateful to Dr. Kevin Fox, Marianne T., and Robert J. MacDonald Professor in Breast Cancer Care Excellence at the Abramson Cancer Center, Christina Miller, Marla Vega, andMaria Barrera, as well as the many community health centers and organizations in Philadelphia (Table 1) that partnered with us to reach and deliver screening and care to our un- and under-insured communities.

SUPPLEMENTARY MATERIAL

The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fpubh. 2021.595786/full#supplementary-material

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Conflict of Interest: The authors declare that the research was conducted in the

absence of any commercial or financial relationships that could be construed as a

potential conflict of interest.

Copyright © 2021 Guerra, Verderame, Nicholson, Wan and Brooks. This is an open-

access article distributed under the terms of the Creative Commons Attribution

License (CC BY). The use, distribution or reproduction in other forums is permitted,

provided the original author(s) and the copyright owner(s) are credited and that the

original publication in this journal is cited, in accordance with accepted academic

practice. No use, distribution or reproduction is permitted which does not comply

with these terms.

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COMMUNITY CASE STUDY published: 31 March 2020

doi: 10.3389/fpubh.2020.00088

Frontiers in Public Health | www.frontiersin.org 1 March 2020 | Volume 8 | Article 88

Edited by:

Simone Rauscher Singh,

University of Michigan, United States

Reviewed by:

Jason Scott Turner,

Rush University, United States

Berkeley Franz,

Ohio University, United States

Judith Connell,

George Washington University,

United States

Kelly Kelleher,

The Research Institute at Nationwide

Children’s Hospital, United States

*Correspondence:

Sue A. Kaplan

[email protected]

Specialty section:

This article was submitted to

Public Health Policy,

a section of the journal

Frontiers in Public Health

Received: 13 November 2019

Accepted: 03 March 2020

Published: 31 March 2020

Citation:

Kaplan SA and Gourevitch MN (2020)

Leveraging Population Health

Expertise to Enhance Community

Benefit. Front. Public Health 8:88.

doi: 10.3389/fpubh.2020.00088

Leveraging Population Health Expertise to Enhance Community Benefit

Sue A. Kaplan* and Marc N. Gourevitch

Department of Population Health, NYU Grossman School of Medicine, NYU Langone Health, New York, NY, United States

As the Internal Revenue Service strengthens the public health focus of community

benefit regulations, and many states do the same with their tax codes, hospitals are

being asked to look beyond patients in their delivery system to understand and address

the needs of geographic areas. With the opportunities this affords come challenges to

be addressed. The regulations’ focus on population health is not limited to a defined

clinical population—and the resulting emphasis on upstream determinants of health

and community engagement is unfamiliar territory for many healthcare systems. At

the same time, for many community residents and community-based organizations,

large medical institutions can feel complicated to engage with or unwelcoming.

And for neighborhoods that have experienced chronic underinvestment in upstream

determinants of health—such as social services, housing and education—funds made

available by hospitals through their community health improvement activities may

seem insufficient and unreliable. Despite these regulatory requirements, many hospitals,

focused as they are on managing patients in their delivery system, have not yet

invested significantly in community health improvement. Moreover, although there are

important exceptions, community health improvement projects have often lacked a

strong evidence base, and true health system-community collaborations are relatively

uncommon. This article describes how a large academic medical center tapped into the

expertise of its population health research faculty to partner with local community-based

organizations to oversee the community health needs assessment and to design,

implement and evaluate a set of geographically based community-engaged health

improvement projects. The resulting program offers a paradigm for health system

investment in area-wide population health improvement.

Keywords: hospital community benefit, health systems and community partnerships, hospitals addressing social

determinants of health, community health improvement plan, departments of population health

INTRODUCTION

On March 23, 2010, the Patient Protection and Affordable Care Act (ACA) added a new section 501(r) to the Internal Revenue Code creating “Additional Requirements for Charitable Hospitals” (1). Pursuant to these provisions, not-for-profit hospitals are required to undertake a community health needs assessment (CHNA) every 3 years and then develop an implementation strategy—a set of “community health improvement” activities—to address priorities that are identified through that process (2). A number of states have similar policies in their tax codes. For example, the New York

Kaplan and Gourevitch Population Health Expertise for Community Benefit

State Department of Health for many years has mandated that every not-for-profit hospital submit a Community Service Plan (CSP) to the State. Beginning with the CSPs that were due in the fall of 2013, the State sharpened its public health focus, requiring hospitals to align their plans with local health department priorities, which, in turn, were to align with the State’s “Prevention Agenda” (3).

These federal and state regulations have been designed to: (a) open healthcare systems to greater community input; (b) foster “greater collaboration between state and local health agencies and hospitals serving the region;” (4) and (c) leverage hospital resources to advance area population health (3). Yet effective implementation of these requirements is typically challenging both for hospitals and for the community organizations with which they seek to partner. For many health care systems, focused as they are on the complexities of managing care within their walls, engaging with community partners and developing programs to improve population health call upon unfamiliar skills (5). At the same time, for many community residents and community-based organizations, large medical institutions can feel bewildering or unwelcoming. And for neighborhoods that have experienced chronic underinvestment in the upstream determinants of health—social services, housing, and education—the funds made available by hospitals through these community health improvement activities may seem insufficient and unreliable.

Community health improvement resources are one of the myriad assets that healthcare systems have—as clinical providers, employers, educational institutions, purchasers, and investors— that can be leveraged to strengthen the drivers of health in the communities in which they are located (6). Over the past few years, innovative health systems have begun to recognize these levers and look upstream to address social determinants of health—whether out of a sense of mission, to be in compliance with state regulations, to enhance reputation, to attract and maintain staff and patients, or to prepare for anticipated changes in reimbursement (7). Examples are beginning to emerge for how these efforts can be structured and sustained (8–10).

Based on the experience of one major academic health system—New York University Langone Health (NYULH)—we describe a model of how population health expertise can be brought to bear to address community health improvement requirements as part of a community-engaged approach that results in sustainable improvements in population health.

DEFINING AND ENGAGING COMMUNITY

AND SETTING PRIORITIES

For academic medical centers, particularly those located in cities dense with other healthcare systems, defining a “community” can present a challenge. NYULH serves a broad geographic area: its primary service area includes the New York City boroughs of Manhattan, Brooklyn, and Queens, and its secondary service area extends into the borough of Staten Island, as well as Long Island, Westchester, and New Jersey. To enhance the impact of the CSP and create opportunities for synergy across

programs, NYULH in 2013 narrowed the geographic scope of its CSP (previously the entire lower third of Manhattan) to focus on the closest areas of greatest need: the Lower East Side and Chinatown (together comprising Manhattan Community District 3). Following merger in 2017 with a community hospital (Lutheran Medical Center) and associated network of Federally Qualified Health Centers in Brooklyn, the CSP extended into the Sunset Park neighborhood of Brooklyn.

The three neighborhoods comprising NYULH’s CSP catchment area—the Lower East Side, Chinatown and Sunset Park—share many characteristics and face similar challenges. Each is a microcosm for the social, economic, and linguistic diversity of New York City and has served as a first destination for immigrants, with high percentages of residents who are foreign born and with large Latino and Asians populations. Even as these neighborhoods gentrify, residents continue to experience high levels of poverty, low educational attainment, and health disparities.

At the same time, each neighborhood benefits from strong networks of community-based organizations (CBOs) that provide services and support for residents. Information about health status and trends in these communities, as well as our process for assessing assets and needs and setting priorities, can be found in our comprehensive Community Health Needs Assessment and Implementation Plan at https://nyulangone.org/ files/chna-csp-final-8-5-19-complete-1.pdf.

Aligning with the New York State and New York City public health and community priorities, the NYULH Community Service Plan engages multiple sectors (e.g., healthcare, education, social service, faith-based organizations, and housing providers) in its goals of: (a) preventing chronic diseases by reducing tobacco use and preventing and addressing obesity, and (b) promoting healthy women, infants and children through programs focusing on parenting and teen health. These goals were selected based upon the CHNA we conducted, which analyzed and presented to the community primary and secondary data about community needs and priorities in Manhattan Community District 3 and in Sunset Park, including data from the New York City Department of Health and Mental Hygiene’s Community Health Survey and the New York City Department of City Planning, as well as focus groups, surveys, interviews and meetings with residents and other community stakeholders. The priorities selected reflect continued community concern about ongoing health disparities, including tobacco use, obesity, early childhood development, and teen health. In addition, the connection between housing quality/security and health emerged as a growing concern, which led to the formation of the Brooklyn Health and Housing Consortium described below.

To oversee the need and asset assessments, priority setting, and implementation of the CSP, we formed a Coordinating Council led by the Department of Population Health and composed of NYULH faculty and staff, leadership and staff of partnering CBOs, community leaders (including community health workers, faith-based leaders, Community Board members), and a growing group of other stakeholders including researchers and policymakers. Beginning in 2017,

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Kaplan and Gourevitch Population Health Expertise for Community Benefit

we fully integrated partners from the NYULH Brooklyn-based system, including its affiliated network of Federally Qualified Health Centers, the Family Health Centers at NYU Langone, which now co-leads the group.

Each CSP initiative has at least one faculty partner and one community partner. To enable full participation of community partners, we have sought to ensure that the CSP program budgets cover not only the time of CBO staff who work directly on the project but also a portion of senior management time, recognizing the importance of their supervisory roles and their participation as leaders on the Coordinating Council. As one community partner observed, in partnering with academic institutions, senior staff of community organizations are often asked to contribute their time pro bono, straining already tight budgets.

The Coordinating Council serves as the forum for coordinating across the CSP initiatives, identifying shared challenges and emerging community needs, and grounding the work in a community based participatory approach (CBPA). In the first year of the CSP, we reviewed principles of community engagement and sought to anticipate potential causes of tension (11). From our previous experience in community based participatory research (12–14), and from early conversations with key informants as part of the CHNA, we were acutely aware of the potential for misunderstanding between academic institutions and community partners. A small group of faculty and community leaders drafted a memorandum of understanding, which provided detailed language about collaboration in program development and implementation, data sharing, and the development of presentations and publications, including the expectation of co-authorship. More recently, growing out of two CBPA projects (an assessment of the health needs and priorities of the Arab American community in southwest Brooklyn and an asset and needs assessment of Red Hook, a neighboring community in Brooklyn) the Coordinating Council revisited and revised its guiding CBPA principles and is in the process of identifying the capacity building activities and skills that are needed to support the movement of our projects further along the spectrum of community engagement (15). The principles, which grew out of a review of the extensive literature on CBPA and academic-community partnerships (16–23), are currently being reviewed and revised by our community partners and with community residents, and will then will be posted and shared as a possible starting place for other community health improvement plans.

LEVERAGING POPULATION HEALTH

EXPERTISE IN EVIDENCE-BASED

PROGRAMS

State and federal regulations governing community health improvement projects require that hospitals select evidence-informed interventions that meet the needs identified in the CHNA, describe their anticipated impact, and set forth a measurement and evaluation plan (2, 3, 24). To take advantage of expertise in the

design, implementation and evaluation of evidence- based programs, beginning in 2012, NYULH transferred responsibility for the CHNA and the development of its CSP from its corporate office of Strategy, Planning and Business Development to its academic Department of Population Health.

In developing an initial portfolio of community health improvement projects, faculty with population health expertise drew upon existing grant-funded evidence-informed programs designed to address the health needs of underserved populations, primarily low-income Latinx and African Americans. Building on this foundation, faculty partnered with community-based organizations to adapt those programs, tools and materials for implementation in their settings and to reflect the needs and preferences of their diverse populations, leveraging, and enriching faculty’s understanding of cultural and linguistic translation, behavior change, and implementation science. The following two examples illustrate this process (A fuller picture of these and other CSP projects can be found at https://nyulangone.org/our-story/community-health-needs- assessment-service-plan).

ParentCorps ParentCorps, an evidence-based program developed byNYULH’s Center for Early ChildhoodHealth andDevelopment, is designed to buffer the adverse effects of poverty and related stressors on early child development by engaging and supporting both parents and teachers at children’s transition to school. The program is implemented in early childhood education or childcare settings and includes professional development for teachers and other caregivers and a 14-session weekly group educational series for parents and children. Two federally- funded, randomized controlled trials with more than 1,200 poor, minority children found that ParentCorps results in more supportive and nurturing home and early childhood classroom environments, higher kindergarten achievement scores (reading, writing, and math) and, among the highest-risk children, lower rates of obesity, and mental health problems (25). A benefit-cost analysis indicates that ParentCorps has the potential to yield cost savings of more than $2,500 per student (26).

Through the CSP, ParentCorps has partnered with University Settlement Society, a large social service agency with three early childhood sites, and with elementary schools located in the CSP catchment area, training nearly 200 teachers and teaching assistants and over 100 other professionals including mental health professionals, social workers, and administrators. In addition, ParentCorps staff have implemented seventeen 14- session series of the Parenting Program in English, and in Mandarin and Cantonese for the first time, reaching 555 families, in the process translating and adapting materials so that they are culturally tailored and acceptable to this new population. Based on earlier studies, we estimate that the program will increase parent knowledge, skills, and engagement in school; decrease the percentage of children with behavior problems; increase healthy eating and physical activity; and decrease the percentage of children who are overweight/obese.

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Tobacco Free Community Despite the availability of safe and effective treatment for tobacco dependence, only a small proportion of smokers who try to quit each year use cessation therapies. This is particularly true among low-income adults and for non-English language speakers, contributing to growing disparities in smoking prevalence (27). The CSP navigator program is designed to address this gap, with a particular focus on Chinese American men, who have among the highest smoking rates in New York City. In partnership with Asian Americans for Equality (AAFE) and the Asian Smokers’ Quitline (ASQ), experts from the Department of Population Health’s Section on Tobacco, Alcohol, and Drugs are implementing a community navigator model that mirrors the patient navigator model developed, studied and implemented by the American Cancer Society (28). Results of this program have been comparable to other navigator programs (34% self-reported quit rate) and unusually, because of its roots in the community, AAFE has been able to reach many smokers who had never previously tried to quit or cut down.

PLANNING FOR SUSTAINABLE IMPACT

Neither the Internal Revenue Service nor the Affordable Care Act mandate a dollar amount or percentage of operating budget that not-for-profit hospitals are required to allocate to their community health improvement projects. Indeed, it has been estimated that nationally only about five percent of community benefit dollars are allocated to community health improvement programs (29). Although a large figure when aggregated nationally, locally, the modest scope of such funds can limit their impact, particularly when viewed in the context of longstanding, unmet community needs. Fostering the sustainability of initiatives launched through community health improvement efforts is a way of extending the impact of limited funds. There are several strategies that health systems can use to advance this goal: (a) building capacity among partners and within the healthcare system; (b) integrating programs into operational flow and procedures; (c) supporting public policies that maintain initiatives and facilitate their diffusion; and (d) leveraging existing or new funding and resources that can be braided into the stream of support (30).

Building Capacity Academic medical centers can provide a wide array of capacity- building resources to CBOs in addition to providing direct funding for programs. For example, NYULH experts on tobacco cessation have led several in-depth training programs, reaching community health workers across the Community Service Plan partnership. Tobacco cessation experts from the medical center have also partnered with the Chinese American Medical Society to provide lectures on smoking cessation to their members for continuing medical education credit.

Through the Community Service Plan, the Family Health Centers at NYU Langone have also championed capacity building to support child development and school readiness. The ParentChild+ program (formerly known as the Parent- Child Home program), a national, evidence-based early literacy,

parenting and school-readiness program, offers year-long training and support to Family Child Care (FCC) providers to promote school readiness for all children in their care. The impact of the program extends beyond the FCC environment. Parents whose children are enrolled at an FCC have reported changes in language and literacy behaviors at home, such as replacing screen time with book reading.

Academic medical centers can also support capacity-building by offering access to educational and professional development opportunities. Community partners are routinely invited to conferences to present their CSP-supported work, often with faculty co-authors; and NYULH faculty provide technical assistance and consultation on data analysis to support program evaluation and needs assessments. Recently, the CSP staff launched a series of monthly workshops inviting faculty, staff, and community experts to present on topics that reflect shared program needs and interests. The workshops have addressed survey development, in which partners were invited to bring draft instruments for review and discussion; m-health strategies in community settings; approaches to health literacy; and mindfulness for health professionals. As we have deepened our focus on CBPA, these sessions will be used to build capacity across all current, planned and future projects to do more deeply engaged community work. Emerging topics include: how to define the relevant community or communities; understanding community organizing principles and strategies; and tools and processes to promote trust, engagement, self-reflection, and equity. In addition, our quarterly Coordinating Council meetings foster cross-project learning, for example through discussion of strategies and approaches for community engagement and facilitating behavior change across cultures (31). These forums also provide an opportunity for CBOs to network with other organizations and with policymakers and potential funders.

As others have noted, the CHNA provides an opportunity for “community-engaged, health equity research” (32). Indeed, in partnering with community-based organizations, it is important for hospitals to recognize that, done right, capacity building is bidirectional. Through the discussions in our Coordinating Council, we are able organically to identify issues that have not yet emerged through more formal needs assessments or in existing data. These have included, for example, the intergenerational needs of Chinese American families in which children are raised abroad in their early years (33), and very early on we learned of the growing concern among undocumented immigrants who fear seeking care and accessing entitlements. These insights have generated new program approaches and opportunities for timely and important responses and research. In addition, partnerships can provide an opportunity to collect pilot data to support collaborative grant development. For example, as part of our Tobacco Free Community initiative, we conducted focus groups with residents in public housing about their attitudes toward the federally-mandated smoking ban being implemented in their apartment buildings, providing helpful information to the New York City Housing Authority as it rolls out its program and serving as pilot data for a large collaborative study (funded by the National Institutes of Health) of the impact of this new regulation.

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Relationships with partners can also provide educational opportunities, including site visits for medical students and student research projects. Finally, an unexpected consequence of the Coordinating Council structure has been that it has facilitated productive relationships across divisions within the Department of Population Health, across departments within the medical center, and with other schools across the university.

Integrating Programs Into Operational

Flow Programs are more likely to be sustained if they are aligned with organizational culture and priorities and integrated into operational flow and standard operating procedures (34). For this reason, in implementing the Greenlight program, a practice- based obesity prevention program, we worked closely with colleagues at the Charles B. Wang Community Health Center to minimize burden on health care providers and to integrate the program into the flow of the busy pediatric practice of this Federally QualifiedHealth Center. This hasmeant collaboratively designing program implementation with administrators to take advantage of patient waiting times and working with existing staff who provide materials and coaching. The successes and core insights from the Manhattan implementation are being used to align the program with the pediatric workflow in the Seventh Avenue Family Health Center site in Sunset Park.

Similarly, AAFE now screens for tobacco use on all of its intake forms (for example, for housing, insurance, small business development) and provides information about smoking cessation at community meetings on a wide array of topics, having learned that people are more amenable to hearing about tobacco cessation when other services are being provided and other problems solved.

Promoting Policy Change and Program

Diffusion Engaging policymakers has been a core strategy of the Tobacco Free Community initiative. Growing out of and supported by the CSP partnership and the RCHNCommunity Health Foundation, the Charles B. Wang Community Health Center spearheaded the creation of a City-wide anti-smoking coalition, which helped field a street intercept survey in Chinese American neighborhoods, testified before the City Council, and worked with the New York City Department of Health and Mental Hygiene in developing and publicizing an Epi Data Brief that highlights cancer as the leading cause of death for Chinese New Yorkers, reflecting the persistently high rates of smoking among Asian American men (35). In response, the City Health Department launched an Asian language public awareness campaign. One of the Coalition partners, Korean Community Services, received funding from the City Council to support a tobacco navigator program in the Korean American Community, and the effort is now being expanded to include other immigrant-serving CBOs.

Leveraging Resources Although the scale of community health improvement funding alone is insufficient to support sustainable and long-term change, these dollars can be used to leverage other resources. Some have

suggested creating pooled “community health trusts” that might attract broader investment (36). Others have used community health improvement dollars to “unlock” capital investments (37). At a programmatic level, we have sought to pool support by linking to a wide range of resources. For example, the smoking cessation program uses existing relationships and forums to direct people to available resources: the New York State Smokers’ Quitline and to the Asian Smokers’ Quitline, both of which offer free coaching and nicotine replacement therapy. In addition, the Robin Hood Foundation provided substantial supplemental funding for the CSPHealth+Housing Initiative, a pilot housing- based community health worker project in two affordable buildings on the Lower East Side (38). The initiative is now being sustained and expanded in two additional buildings by the owners of one of the buildings in which it was piloted, in continued collaboration with our community partner, Henry Street Settlement. This not only provides a potentially sustainable and replicable funding source, but it also gives our partners ownership over the initiative and allows them to tailor the program to meet ongoing needs.

Similarly, the Family Health Centers’ Project SAFE, a peer education program employing an evidence-based youth development approach to prevent teen pregnancy and HIV/AIDS, was able to deepen their reach in schools through the Community Service Plan, which was then leveraged to acquire federal Substance Abuse and Mental Health Services Administration grant funding. Leveraging community health improvement funding to access outside support not only increases the pool of available dollars, but also helps to increase visibility and demonstrate program value to internal and external audiences.

CHALLENGES AND LESSONS LEARNED

In launching the CSP, we experienced a number of challenges. Within our own institution, there were tensions as the Department of Population Health applied a more rigorous set of criteria to the programs that would be funded through the plan. This meant eliminating some projects that had deep institutional roots but lacked a strong evidence base or were more focused on data collection and research than on service delivery. In addition, as noted above, we brought to the CSP a set of expectations about community engagement that differed from the traditional academic approach. We have found, however, that faculty and staff have relished the deep community relationships and the egalitarian nature of the Coordinating Council, which brings together community health workers and senior faculty, policymakers and staff (31).

Developing trusting relationships with community partners presented another challenge. The CHNA regulations are specifically designed to require that hospitals open their doors to community input. Our initial foray into the community was revelatory—and sometimes painful. Overtures to some prospective partners were met with a high degree of skepticism. Several were critical of the medical center and the university’s role in the community, noting a previous lack of engagement.

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Significant time was spent assuring community leaders of our commitment to true partnership. Fostering a strong community- based culture and identity within the Coordinating Council has been critically important to maintaining credibility with our partners and in the communities in which we are working.

The challenge of matching evidence-based community- oriented programs with community priorities has meant that our work is held together more by a set of principles and an approach than by a defined goal or outcome. Although each project has an evaluation component, “moving the needle” at a population level remains an elusive goal. This is complicated further by our geographic spread, spanning several diverse communities. A more laser-like focus on an issue or geographic area might have aligned our projects toward a single measurable outcome. But our approach has helped build the partnership and has allowed us to be responsive to needs and to generate new and promising initiatives as opportunities arise. For example, growing out of our work and deep community engagement, we have developed the Brooklyn Health and Housing Consortium, which engages health care providers, CBOs, and housing providers with the goal of developing relationships and infrastructure, and building capacity to support people with complex health and housing needs. Similarly, we have created a Community Health Worker Research and Resource Center to serve as a resource to CBOs, health systems, municipal agencies, and research organizations that are planning, or seeking to strengthen, initiatives that use lay health workers to enhance care, link services, and improve community health. These more recent efforts are evidence of a deeper level of engagement and lasting contribution to local health improvement capacity. The value of these initiatives would not likely be captured in a traditional cost-benefit approach.

CONCLUSION

Community health improvement funding provides an important resource to support community-based population health initiatives. But the absence of a required funding threshold and general lack of hospital expertise in partnering to address the upstream determinants of health, threaten to limit its impact. Despite the ACA requirement for a thorough needs assessment and implementation plan, and similar mandates in many state tax codes, many hospitals have not invested deeply in

community health improvement. Moreover, although there are important exceptions, community health improvement projects have often lacked a strong evidence base, and true community collaborations are difficult to achieve and sustain (39).

As hospitals begin to develop departments of population health (40), they can leverage that growing expertise—in data collection and analysis, in implementation science, in partnering to promote health and wellness outside their walls—to guide their community health improvement programs and widen the lens from patients in the delivery system to residents in the community. In this way, community benefit resources can be deployed more effectively to address important community health priorities, build community and institutional capacity, and lay a foundation for long-term sustainable change.

DATA AVAILABILITY STATEMENT

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation, to any qualified researcher.

AUTHOR CONTRIBUTIONS

SK and MG contributed to the design and implementation of the programs described and to the writing of the manuscript.

FUNDING

Support for the work described in this paper was provided by NYU Langone Hospitals’ Community Health Improvement funding as part of its Community Benefit spending. Supplemental funding for the Health + Housing Project was provided by the Robin Hood Foundation. Initial support for the city-wide tobacco coalition was provided by the RCHN Community Health Foundation. Open access publication fee provided by NYU Langone Health.

ACKNOWLEDGMENTS

The authors gratefully acknowledge the contributions and work of the members of the Community Service Plan Coordinating Council.

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Conflict of Interest: The authors declare that the research was conducted in the

absence of any commercial or financial relationships that could be construed as a

potential conflict of interest.

Copyright © 2020 Kaplan and Gourevitch. This is an open-access article distributed

under the terms of the Creative Commons Attribution License (CC BY). The use,

distribution or reproduction in other forums is permitted, provided the original

author(s) and the copyright owner(s) are credited and that the original publication

in this journal is cited, in accordance with accepted academic practice. No use,

distribution or reproduction is permitted which does not comply with these terms.

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