Adapting Race & Ethnicity Categories to Fit your Community

By Jeff Desmarais & Ranjani Paradise

In honor of National Minority Health Month, ICH is exploring the complexities of race and ethnicity data collection. Any program, organization, or institution seeking to identify and address racial and ethnic health disparities must collect race/ethnicity data on the individuals they serve. However, in practice this proves challenging, as individuals often do not identify with the racial and ethnic categories provided.

ICH partners with the Cambridge Health Alliance (CHA) Zero Disparities Committee to ensure that race and ethnicity patient data are both accurate and meaningful for patients and the hospital. We assist CHA with patient demographic data collection and analysis, which helps CHA address disparities in service utilization and ensure that all patients receive linguistically and culturally appropriate care. We collect race data by asking patients to choose one or more of the categories defined by the federal Office of Management and Budget (OMB):

                                                                                                                                                                      

·        American Indian or Alaska Native
·         Asian
·         Black or African American
·         Native Hawaiian or Other Pacific Islander
·         White
·         Other

These OMB categories are required for state and national reporting and allow us to easily compare the race distribution of our patient population with other healthcare systems’ or communities’. However, CHA’s patient population is extraordinarily diverse, and the concept of race varies widely across cultures. Many of our patients simply do not relate to the OMB race definitions and categorizations. For example, Latino patients and Middle Eastern patients often express confusion when asked to select a race, as many do not see themselves fitting any of the given categories. And while it may seem clear that patients from India should fall under the Asian category, some Indians disagree - to them, Asian indicates East Asian and is distinct from South Asian. Overall, more than 25% of CHA’s patients do not identify with any of the OMB categories and choose “Other” as their race, which calls into question the usefulness of the OMB categories in our increasingly diverse community.

Because of these issues, we also collect detailed ethnicity data to better characterize our patients’ cultural backgrounds. Patients are asked to self-identify their ethnicity (or ethnicities) from a list of more than 150 options (e.g., Algerian, Bangladeshi, Egyptian, Greek, Nepalese, Syrian, etc.). We strive to make these ethnicity options specific enough that patients can select one or more with which they truly identify. Overall, we find that ethnicity data can be far more useful than race data for ensuring we provide culturally appropriate care to everyone we serve.

ICH also works as the evaluator of the Youth First Initiative in Holyoke and Springfield, MA. Youth First is a community-wide teen pregnancy prevention initiative, which was developed with grant funding from the Centers for Disease Control and Prevention. The Initiative is a collaboration between the Massachusetts Alliance on Teen Pregnancy (MATP), the YEAH! Network, and many stakeholders within the two communities, including schools, community organizations, and health clinics. Youth First began in 2010 and its goal is to reduce teen births by 10% by 2015 in Holyoke and Springfield, MA. While the overall teen birth rates in these communities are significantly higher than the state’s, there are also large racial/ethnic disparities within the communities.

Source: Births (Vital Records). Massachusetts Community Health Information Profile (MassCHIP). Version 3.0r328. Massachusetts Department of Public Health. Data downloaded May 6, 2013

Thus, collecting meaningful race/ethnicity data is critical to both improving and documenting improvement in teen pregnancy prevention efforts.

One of the key components of the Youth First initiative is implementing evidence-based sexual health education programs for adolescents. As a part of reporting requirements for funders, we collect race/ethnicity data from program participants via surveys. Collecting this data allows us to understand the populations we are reaching. In addition to the OMB race categories, the CDC requires data for the following ethnicity categories:

·         Hispanic or Latino

·         Not Hispanic or Latino

Cultural practices, beliefs, values and behaviors, all of which can reflect a person’s identity, can have an impact on a community’s health. Collecting data that taps these identities, if done meaningfully, can serve as an indicator to better understand, explain and ultimately address health inequities. With large Spanish-speaking communities in Springfield and Holyoke, it is critical to use measures that capture their unique and specific identities. Using the race/ethnicity categories often required by funding organizations can prohibit a comprehensive understanding of how communities might view themselves. For example, a Dominican or Puerto Rican teen might not identify with any of the OMB racial categories. Additionally, using the ethnicity category “Hispanic or Latino” can mask differences within Spanish-speaking communities. A teen that grew up in rural Mexico might have very different experiences, behaviors and values than a Puerto Rican teen that grew up in Holyoke. In this project, in order to ensure identity is accurately captured, we added an additional question that includes a much more comprehensive list of 29 different ethnicity categories (for example: Puerto Rican, Caribbean Islander, Dominican, Korean), thus expanding our understanding of identity among youth enrolled in evidence-based programs.

Capturing race and ethnicity data is essential not just for program improvement purposes, but also for ensuring that public health interventions are actively addressing health inequities. In developing alternative ways of measuring this data, it is critical to engage the community during the instrument development phase. It’s often necessary to go beyond the basic race/ethnicity reporting requirements, and delve deeper into communities’ understanding of race, ethnicity, and identity, in order for the data to be meaningful and actionable. 

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The views expressed on the Institute for Community Health blog page are solely those of the blog post author(s), and do not necessarily reflect the views of ICH, the author’s employer or other organizations with which the author is associated.

ICH and Agenda for Children: Demonstrating Program Impact

By Kat Xu, MPH

In April 2013, Cambridge was one of six communities awarded the inaugural Robert Wood Johnson Foundation’s “Roadmaps to Health Prize” for developing innovative strategies to improve community health.One of the featured Cambridge community partnerships was the Agenda for Children (AFC) Literacy Initiative.

In 2002, The AFC Literacy Initiative launched the “Let’s Talk…It makes a difference” campaign, which aims to help children enter school primed to succeed by providing parents and caregivers with knowledge, skills and materials to support their children’s language and literacy development. This program offers an array of services and activities for families with children ages birth to 5 years old, all of which stress that parents are their children’s first teachers. Free workshops help parents learn the importance of talking, interactive reading, and storytelling and provide practical techniques to encourage high-quality parent-child verbal interaction. The program also provides home and maternity ward visits, book distributions, and playgroups.

ICH’s Partnership with AFC

Since the Let’s Talk campaign’s inception, AFC has partnered with ICH to support their continuous program improvement efforts. ICH provides ongoing evaluation assistance using a participatory approach. ICH and AFC staff work together to implement evaluation activities, including fidelity checklists and activity logs for the Literacy Ambassadors, Talk Workshop and Reading Party surveys, and telephone interviews with a sample of home visit participants. ICH and AFC staff’s close collaboration allows the evaluation findings to critically impact program enhancement and sustainability by highlighting the program’s effectiveness and community impact. 

"We've worked with the Institute for Community Health for many, many years. They provide incredible knowledge and expertise beyond what we have available at our organization. They have worked with us to tailor our evaluation efforts, so that the results are useful and can guide decisions about programmatic changes.  We also have used the results of our evaluation efforts to illustrate program outcomes and successes.”

- Jen Baily, Agenda for Children Program Coordinator

Let’s Talk Campaign Produces Results

Literacy Home Visit Participants (n=170)

Cumulative results from 2007-2011 reveal that the program is having a profound impact on Cambridge children and families. Through surveying parents after the talk/read workshops and home visits, we found that parents increased their knowledge of the importance of talking and reading with their children and demonstrated significant behavioral changes around talking and reading with their children at least 1 month to 3 months after the home visits.  

Supplementing the quantitative data, our interviews with parents revealed a more complete picture of the program’s importance to the community. Parents mentioned:

• Increased social connectedness through information and resources
• Stronger parent-child engagement through talking and reading with children 
• “(I learned that) It's important to have a connection and listen to your babies so you can know what their needs are.”
• Learning and adapting new techniques to talking and reading (e.g. calmer tone, storytelling with picture books, having conversation with child and asking questions)
• Gaining emotional support from home visits
• “Sometimes as a new mom, it can be isolating, so having a home visitor was a nice change.”
• Feeling encouraged to communicate with their children in English and in their native language
• Seeing their child grow and change (e.g. more engagement through talking and increased interest when reading)

Agenda for Children is improving Cambridge’s community health by working to ensure all of its children are literate.  Because many Cambridge families have multiethnic or immigrant backgrounds, AFC’s multilingual and multicultural staff are crucial for improving literacy and connecting families with community resources.  ICH’s long partnership with the AFC Literacy Initiative has been a fruitful one, as we have seen how our program evaluation support has helped AFC progress and make a significant impact in the community.  

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The views expressed on the Institute for Community Health blog page are solely those of the blog post author(s), and do not necessarily reflect the views of ICH, the author’s employer or other organizations with which the author is associated.

Learning About My Community Through Data: Reflections on My Summer at ICH

By Grace Chan

Tufts University MS in Nutrition/MPH Candidate

My summer as the Data Analyst Intern at the Institute of Community Health (ICH) has been an enriching experience. ICH has provided me insight into the world of quantitative data as well as taught me more about the communities surrounding metro-Boston – both aspects I wanted in a summer internship.

Before joining ICH in May, I finished my first year of graduate school at Tufts University.  As a MS Nutrition/MPH student, my goal is to gain more knowledge about the role of nutrition interventions in preventing chronic diseases. I want to gain skills in epidemiology and biostatistics in order to understand the complex interactions between nutrition, environmental exposures, and health behaviors that lead to various health outcomes. Having lived in Boston for less than a year, I decided to stay here to complete my summer internship rather than go home to California, in order to learn more about the community I am now a part of.

I first heard about ICH through a course at Tufts.  I was intrigued by the work ICH does in collaboration with local communities, and was excited to see a data analyst internship position available for the summer.  At ICH, I have had the pleasure of working on the Everett Data Book Project with Lisa Arsenault, Blessing Dube, Kelly Washburn, and Reann Gibson.  We worked with the Everett community representatives, Jean Granick, Bob Marra, and Jamie Stein, to compile a health assessment data book, detailing the health of the community’s adult and youth populations. Once completed, the data book can be used to inform the development of community programs and promote policy change.

During the internship, I learned to access data from various sources, such as MassCHIP, the Massachusetts Department of Education, and the Bureau of Labor Statistics.  Furthermore, I learned to analyze surveys such as the Youth Risk Behavior Survey (YRBS) and the Behavioral Risk Factor Surveillance System (BRFSS).  I gathered data of interest to the community members from these sources, organized and cleaned the data, and created charts that display the information in usable and meaningful ways.  Additionally, I participated in meetings with the Everett community representatives and made further improvements to the charts based on their feedback.  My team gave me a lot of support and guidance, plus the independence to explore the data and create charts from information I believed the community would find important.  They also offered me opportunities to present the data, most notably, to the larger work group in Everett that represents various sectors in the community.

As I reflect on my time at ICH, I know that I’ve gained valuable knowledge and skills that I will use in my future endeavors.  For example, I am more comfortable working with (and less intimidated by) large data sets.  Also, I developed a keener eye for detail and gained lots of experience working in Microsoft Excel.  Most importantly, I experienced collaborating with community members whose insights give more meaning to the data.  Overall, I am glad to have spent my summer with the wonderful members of my team.  I enjoyed getting to know my ICH team members and the Everett community.  It has been rewarding to be able to contribute to the process of creating the data book, and I cannot wait to see the final product!

Learn about the ICH Internship Program

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The views expressed on the Institute for Community Health blog page are solely those of the blog post author(s), and do not necessarily reflect the views of ICH, the author’s employer or other organizations with which the author is associated.