HDRG Recap: Building Community Based Research through Community Coalitions

DannyEditedAt the November 2017, Health Disparities Research Group (HDRG) meeting, Danny Patterson, Coordinator, Collaborations and Partnerships, Gulf States Health Policy Center (GSHPC), shared about their experiences with coalition building to work for improving health outcomes. Working in 5 states (Alabama, Florida, Mississippi, Louisiana, and Texas) GSHPC united with community members, partner organizations, and service providers to form coalitions including 130 multi-sector community organizations in the states of Alabama (cities of Bayou La Batre, Mobile, Birmingham) and Mississippi (cities of Hattiesburg and Gulfport/Biloxi) and Louisiana via LSU in Baton Rouge. Coalition members represent a range of groups including faith-based organizations, government, education, primary care, mental health, housing, academia, public health, business, law enforcement, and other community-based organizations. GSHPC works with both local and national partners in their work. The work is supported by the National Institute of Minority Health Disparities.

With a focus on health policy research that leads to positive change, the coalition building process included three basic phases: member recruitment, development of strategic partnerships, and training of coalition members. Activities taking place throughout the process include community information meetings, coalition member recruitment, policy focus area identification, subject matter expert presentations, community forums/policy scans, literature reviews, community action plans (in development) and action plan implementation. The goal is to “empower communities and increase their capacity to improve health outcomes.”

The local coalition is currently working in 3 policy areas: health literacy, financial literacy, and educational literacy.  In terms of health literacy, the coalition is working on local practice or policy change by creating pathways for data sharing between Ozanam Charitable Pharmacy and Mobile Board of Health Clinics. The current research pilot, designed by the coalition, will recruit 50 diagnosed diabetes patients (as of November 6, 31 had been recruited). The two organizations serve mostly low-income and homeless individuals. The process under study will facilitate the sharing of information for the participating patients in order to provide more holistic care. To date, lack of transportation from the clinic to the pharmacy has been identified as one of the problems that will need to be addressed. The study will evaluate whether or not the increased communication between pharmacy and doctor translates into improved care and disease medication management for the patients.

During the question and answer phase of the HDRG meeting, Danny stressed the importance of transparency and open dialogue to build the coalition. Such an approach — a willingness to give a little while building something greater — helps develop the relationships needed to develop a healthy and impactful coalition.

Along with projects related to policy, the GSHPC coalition focuses on building community-based leadership capacity. This capacity is critical for sustainable once funding for the projects are over. The built capacity for local leaders to continue the policy work is essential for continued progress toward health equity.

Learn more about the Gulf States Health Policy Center.
Learn more about the Health Disparities Research Group.

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Heart Health Disparities Take Toll on African-Americans

The following excerpt comes from the article by Will Boggs published October 23, 2017,  on Reuters.


African-Americans have worse cardiovascular health and more deaths from heart disease than other groups, at least partly from less effective disease prevention and management efforts, according to a scientific statement from the American Heart Association (AHA).

”While African Americans are more likely to experience many cardiovascular diseases, in particular strokes and heart failure, they are also more likely to die from cardiovascular diseases,” Dr. Mercedes R. Carnethon from Northwestern University Preventive Medicine in Chicago told Reuters Health by email.

Because African Americans develop nearly all cardiovascular diseases – heart attack, stroke, and heart failure – at a relatively young age, she continued, “higher rates of death may arise from the length of time that African Americans live with these conditions.”

“Interrupting this process by preventing the early onset of cardiovascular diseases is one strategy to reduce disparities in cardiovascular disease mortality,” she said.

Traditional cardiovascular risk factors – high blood pressure, diabetes, obesity, and atherosclerosis – are more common and start at earlier ages among African Americans, Carnethon and colleagues report in the journal Circulation.

Unfortunately, not much has changed since 2005 when a special issue of Circulation pointed out disparities in the rates of cardiovascular disease, disease management, and outcomes for African-Americans.

Many of the differences arise from unhealthy behaviors, lower implementation of guidelines shown to improve cardiovascular health, ingrained cultural preferences and attitudes, and lack of persistence in following lifestyle changes that need to be lifelong, the research team writes.

African Americans also have higher rates of certain health conditions that predispose to cardiovascular disease – such as chronic kidney disease, sickle cell disease/sickle cell trait, and HIV, for example.

Genetic differences between African-Americans and other ethnic groups appear to explain only a small part of the disparity in cardiovascular disease rates and outcomes.

Finding strategies that reach younger African-Americans and men with disease prevention messages remains a significant challenge, Carnethon’s team notes.

“Cardiovascular diseases are preventable with healthy lifestyles,” she said. “Unfortunately, many African-Americans do not have equal access to the resources needed to lead healthy lifestyles, specifically access to healthy foods, safe spaces for physical activity, and peaceful homes and communities that promote restorative sleep.”
Read the full article.

CHC Represented at APHA 2017

Four members of the Center for Healthy Communities Research Core attended the American Public Health Association (APHA) Annual Meeting and Expo in Atlanta, GA during early November.  Along with learning from the diverse sessions and experiences offered by the event, the team presented two posters related to the Sentinel Surveillance to Monitor Progress Towards Health Equity Project (Sentinel Surveillance).

Arreita Poster Cropped smallDuring the session “Recent Studies on Health Disparities in Public Health Epidemiology,” Dr. Martha Arrieta presented a poster that discussed a comparison between data provided by the Sentinel Surveillance methodology — primary data — with small area estimates (SAEs) based on the Behavioural Risk Factor Surveillance System (BFRSS) and Census data. Titled “Can we sharpen the focus? Small Area and Sentinel Surveillance Estimates for a Health Disparate Population, “ the poster provided a comparison of both types of data from the focus area for the Sentinel Surveillance project with a review of the estimates for the prevalence of diabetes, high blood pressure, asthma, stroke, cancer, and kidney disease as well as the proportion of persons lacking health insurance. The analysis showed that while the SAEs pinpoint geographic areas of health inequity, the SS sample provides age-specific estimates and can further delineate person-level characteristics useful to focus and tailor health equity interventions.

Lynette poster cropped smallIn the session “Diversity and Dynamics in CBPR Partnerships and Coalitions,”  Lynette Parker presented an overview of the team’s dissemination planning process developed to ensure that Sentinel Surveillance findings are communicated to the community in a useful manner. Titled “Returning what was given: Communicating research findings in the community,” the poster provided a description of the engagement process used to include three distinct community voices into the dissemination planning process: 1) the Community Advisory Board consisting of community leaders who had advised on the project from its inception; 2) Research Apprentices who had been recruited and trained to collect data for the Sentinel Surveillance project as well as conducting other important tasks on the project; and 3) Community Health Advocates who had been involved in various projects through the Center for Healthy Communities Community Outreach Core. The presentation highlighted the importance of listening to diverse community voices in developing an effective dissemination plan.

The three days spent at the APHA Annual Meeting were fruitful and informative. Staff reflections on the event will be posted in the coming weeks.

 

 

 

 

 

4th Annual CEI Advances Regional Health Equity Dialogue

The following excerpt is from the article posted by the UAB Center for Clinical and Translational Science.


On Friday, Oct. 6, the 2017 Community Engagement Institute (CEI) drew a large crowd, both live and virtual, interested in sharing best practices at the nexus of health, environmental renewal, and civil inclusion and empowerment. From the opening keynote speaker to the final networking session, the call for health equity resounded, creating a strong sense of connection and shared purpose among the diverse attendees.

The theme of the CEI 2017 was “Community Health from Engagement and Environmental Renewal (CHEER) for Civil Inclusion and Empowerment.” More than 125 attended in person at the Birmingham-Jefferson Convention Center (BJCC), with dozens more participating at the sister event hosted by CCTS Partner University of South Alabama (USA), which conducted its own breakout sessions in between the livestreamed keynotes from the BJCC.

Opening keynote speaker Dr. Errol Crook, Abraham A. Mitchell Chair, Professor and Chair of the Department of Internal Medicine, University of South Alabama College of Medicine, set the tone with his inspirational personal journey from a basic scientist to a “multi-focused health disparities physician investigator.” He shared how he realized during his medical training that a patient’s background includes important information that wasn’t taken into account but had tremendous bearing on health outcomes “and [social determinants of health (SDHs)] is now a burgeoning field of science.”

Crook highlighted the key ingredients that constitute a healthy community: walkable, easily navigable; safe; good jobs; good educational opportunities; healthy and trusting relationships with neighbors; access to all the necessities of life nearby; low stress; no exposure to environmental toxins; able to make decisions regarding its destiny. The latter, he said, was often overlooked but critical to health. The “opportunity to participate in society” reflects a “difference between being poor and being impoverished,” with impoverishment rooted in a lack of education and a voice as well as income.

The challenge and opportunity for academic-community partnerships are “how to give greater voice to those communities whose voices are most ignored.” Crook stressed the most important ingredient for the success of such a partnership is “respect.” He described the current health care disagreement as a debate between those who see health care as a right versus those who see it as a privilege. He challenged the audience to move past this to instead imagine a nation that has achieved health equity. “Are all Americans empowered to make the decisions that will ensure good health over their lifetime?”

Ms. Diane Bell McCoy, the second keynote speaker, also shared a personal journey of finding her voice and learning to use it to dismantle systemic racism by working within such systems. Her story was at times painfully raw, underscoring the link between racism and its negative mental health impacts, such as depression and suicidal ideation. She described the difficulty she faced in getting culturally relevant mental health services as a young college student, struggling to find an African American therapist who “helped me find my gift and apply it to the world around me.”

Bell McCoy is now the President and CEO of Associated Black Charities, a public foundation credited for its work as a catalyst for statewide advocacy, policy design, and innovative transactional strategies as they relate to the impact of structural racism in depressing the economic and health outcomes for the African American community. She explained her approach is grounded in “the Ps”: the intersectionality of Policies that support the racial distribution of both health and wealth; the Process of community engagement; changing Programs not just People (“lives can change, but if systems do not, racial inequities remain”); and keeping it Personal. “This work takes courage…there can be a shared vision, but you have to get past language barriers and establish trust, build relationships, before you can discuss the issue of privilege,” she said.

Read the full article.

Reducing and Breaking Barriers to Empowerment and Health

The following article was submitted by guest contributor Dr. Jeremy Fletcher, Assistant Professor, Department of Physical Therapy at USA.


The International Classification of Function, Disability, and Health provides researchers and clinicians with a framework to conceptualize terms such as participation, or one’s involvement in life situations while considering the barriers and facilitators to achieving health within the context of their environment. It is well established that children with disabilities participate in less physical activity compared to their typically developing peers. Participation in physical activity by children, including those with disability, enhances body composition, bone health, psychological health and promotes social engagement.

Children with disabilities often face many barriers to physical activity, including a need for extra support to participate, a lack of practical instructor training, and the extra costs associated with raising a child with a disability. Additionally, the Alabama Department of Rehabilitative Services’ statewide five-year maternal and child health needs assessment, with a focus on children and youth with special health care needs has identified five unmet community-based service needs. Three of these needs, recreational opportunities, respite care, and support for families are being met by one local non-profit organization, Dance Without Limits Foundation, LLC.

Dance Without Limits (DWL) was founded by Kerrie Benson, a dance teacher and mother to a special needs child, Rock, also known as “Rockstar”. Rock’s love of music and movement was the inspiration behind DWL. DWL currently teaches dance classes to 120 children or adults with disabilities, across ages ranging from 3 to 50. It operates out of two locations, Mobile and Fairhope, with the addition of a third location in Birmingham scheduled for the spring. When the needs of these children, their families – including spouses and siblings – are considered, DWL provides a tremendous service at a very low cost to the participant. Because of its non-profit status, DWL is able to meet the needs of the children through scholarships to assist with the $50/month fee.

During the class, children and adults with disabilities are paired with a volunteer dance partner. Dance partners range from siblings to pre and post professionally trained therapists and nurses to community members with a passion to serve the underserved. The commonality of the expression of dance and empowering sentiment unite each participant, regardless of their ability, creating an environment of diversity, inclusion, and fun! And while each dancer is moving their body, experiencing the benefits of physical activity, parents are able to engage in discussions about navigating the world of disability or use the hour of respite to enjoy dinner.

In addition to providing a valuable community service, DWL has also partnered with the University of South Alabama’s Department of Physical Therapy to deliver a unique service-learning experience. First-year Doctor of Physical Therapy students complete a learning module on health care communication prior to serving as a dance partner, and then write a paper describing barriers to communication, nonverbal and verbal cues, and establishing rapport. Because many participants have communication deficits, students must focus on overcoming barriers to communication while seeking to improve rapport. By providing education in a real-world environment, the children get to do the teaching! Occupational therapy students also volunteer their time to support the effort making DWL an interprofessional experience.

DWL is an example of what is possible when passion, energy, and a willingness to address a common need collectively mold together to reduce and break barriers to empowerment and health. You can learn more about DWL by following them on Facebook or at their website.

HDRG Recap: Experiences with Community-Based Participatory Research

On October 20, 2017, the Health Disparities Research Group (HDRG) held its first meeting of the 2017-2018 academic year. Two speakers provided an overview of experiences related to health disparities and community-based participatory research.

Ms. Shelley-Tremblay, formerly the project manager for the Center for Healthy Communities and current Director of the Office of Community Engagement at the University of South Alabama, reported on her experience at the 2017 Summer Intensive hosted by the Community-Campus Partnerships for Health (CCPH). Titled “Structural Inequality: An On The Ground View”, the intensive provided a two-day experiential learning opportunity to the approximately 35 attendees who ranged in age from 16 to 86 and came from various walks of life. Each aspect of the Summer Intensive — 21C Museum Hotel, the University setting, the tour of Historic Stagville, and lecturers — was chosen to facilitate learning about the roots of structural inequality and how tools of Community-Based Participatory Research/Approach (CBPR) and Community Action Strategies can be used to address structural inequality.

In the session on the  “Groundwater” approach, presented by the Racial Equity Institute, LLC,  the group explored racism and inequity as touching and affecting all aspects of life. The facilitators used stories and data to demonstrate how racism is fundamentally structural in nature. With this framework for understanding and analyzing inequality, the final sessions explored how CBPR could be used in response. Shannon finished her presentation with questions for the HDRG group to consider:

  • How can we build on the work of HDRG to “help to ensure that the reality of community engagement and partnership matches the rhetoric?”
  • What role can we play in shifting the conversation about health in our community to an opportunities lens and away from the current focus on problems?
  • Is there value in bringing a similar experience to this region?
  • How can we leverage the assets in our region?
  • What aspects of our ongoing health disparities work can be expanded to make this focus on addressing the link between structural and inequality and health intentional?

In the second presentation of the day, Dr. Martha Arrieta, Director of the Research Core at the Center for Healthy Communities, informed the group of the recent publication of an article about the evolution of the HDRG in the Journal of Higher Education Outreach and Engagement. She explained that HDRG was starting its 13th year and had built a strong platform for health disparities research over its history. In exploring the history and accomplishments of the HDRG, Dr. Arrieta started by reviewing a 2008 publication which outlined the establishment of the group. She then provided an overview of the recent article on the strategies for consolidation. In doing so, she covered:

  • Promotion of Group Identity and Permanence: an overview of activities that were used to form the HDRG and develop connection and focus among the members.
  • Fostering Health Disparities Research Capacity: a review of research projects undertaken by the group over its history.
  • Engagement in Participatory Research: explanation of the partnership with the Bay Area Women’s Coalition and a diabetes research project with the Hands of Hope Clinic in Trinity Gardens.
  • Dissemination of CBPR Principles: an overview of the activities undertaken to disseminate CBPR and community engagement through the university campus.

Dr. Arrieta next discussed the challenges faced by the HDRG over the years and the keys to successfully overcoming those. She described the activities — such as faculty forums, meetings with university leadership, joint research projects, and community partnerships  — as contributing to establishing health disparities/health equity as a concern within the University and HDRG as a leader for community engagement on the campus. Dr. Arrieta ended her presentation by mentioning the plans for the community-engaged dissemination of the findings from the Sentinel Surveillance Project and the potential of work to promote bi-directional links between basic science labs on campus and the community -activities that become building blocks for continued work in community-engaged approaches to researching and addressing health disparities.

Downloads:

Presentation from Ms. Shannon Shelley-Tremblay.
Presentation from Dr. Arrieta.

Why insurance really is a life or death issue, especially for minorities

The following excerpt comes from the article by Dr. Valerie Montgomery Rice posted on CNN on October 19,2017.


The study released this week by the American Cancer Society highlighted the significant role health insurance plays in the widening chasm of disparities in breast cancer mortality.

Progress on this front has been made. The Affordable Care Act (ACA) has resulted in the lowest uninsured rate ever recorded in our nation’s history: 8.8% down from 16% in 2009 before the ACA was signed into law, according to the Council for Economic Advisers and National Center for Health Statistics. It has provided life-saving preventive and diagnostic screenings, access to higher quality care and appropriate treatments, as well as increased opportunities for diverse women to participate in clinical trials.

As we recognize National Breast Cancer Awareness Month this month and continue the national debate over health reform, it is worth noting the impact that a lack of health insurance coverage has on women reaching their optimal level of health or health equity.

I began my medical career as an obstetrics and gynecology resident in the late 1980s at Atlanta’s Grady Memorial Hospital. Emergency rooms in hospitals such as Grady were a last resort for uninsured patients who, in many cases, struggled with undiagnosed cancer, high-risk pregnancies, heart disease, diabetes and other life-threatening diseases.

The disparities in coverage and access to quality care for patients whose cards were stacked against them were striking, especially for women battling breast cancer, which is the most common cancer among women in the United States and is the second leading cause of cancer deaths.

While a host of factors increase women’s risk for breast cancer, such as genetics, age, sex and race, studies show that these factors are exacerbated for underserved communities, black women in particular, where the disease can be a catastrophic difference between life and death.

Mammogram screening is universally accepted as the best weapon for early breast cancer detection. Covered by the ACA as a preventive service at no cost to the consumer, mammogram screenings are the first line of defense. With the elimination of cost we expected an increase in mammograms, particularly among minority women. We hoped it would lead to a decrease in racial/ethnic disparities in breast cancer. And now many studies have confirmed the ethnic gap narrowed between women who received screening prior to ACA, and after.

Why does this matter? If we know that early detection is the key to lowering breast cancer mortality rates among all women, then access to appropriate screenings, early treatment and counseling should be considered the standard of care.

Read the full article.

Mental Health & Latino Kids

In September 2017, Salud America! Published an issue brief that reviewed the evidence related to the mental health of Latino youth. Findings from the research included:

Latino children suffer alarming mental health issues.

  • 22% of Latino youth have depressive symptoms, a rate higher than any minority group besides Native American youth.
  • More than 1 in 4 Latina high-schoolers have thought about committing suicide.
  • Latina high-schoolers are more likely to attempt suicide than their white peers (15.1% to 9.8%).
  • 32.6% of Latino students say they feel hopeless and sad, and participate less in things they enjoy as a result (vs. 27.2% of whites, 24.7% of blacks).

Latino children do not access mental health services as much as their peers.

  • Only 8% of Latinos say their child has ever used mental health care services (vs. 14% of whites).
  • Latino children had half of the outpatient mental health visits that their white peers had.
  • One study found 38.3% of school-aged Latino children and 37.2% of Latino preschoolers had a clinical need for mental health services; yet only 17.3% of school-aged Latino children and 10.8% of Latino preschoolers had received mental health services in the past year.
  • Despite the higher rates of suicide attempts among Latino youth, these children are less likely to be identified as suicidal, and less likely to receive crisis intervention services than others.

The migration experience causes stress, anxiety, and depression in Latino children.

  • Before migrating to the U.S., 38% of Latino children are separated from their parents for up to a year and 32% of Latino children are separated for longer than a year.
  • Latino families face economic hardships, difficult travel conditions, and stressful family separations during migration to the U.S.
  • After migrating to the U.S., Latinos are stressed by social status changes, language issues, discrimination, and immigration status questions.
  • For instance, compared to peers in their native land, Puerto Rican youth living in New York were lonelier and more depressed, anxious, exposed to more violence, and more likely to be discriminated against.

 

See the full report.

New Publication: Consolidating the Academic End of a Community-Based Participatory Research Venture to Address Health Disparities

A recent article published in the Journal of Higher Education Outreach and Engagement explores the development of the Health Disparities Research Group (HDRG) at the University of South Alabama.  Written by a team led by Dr. Martha Arrieta, the article discusses

  • the formation process of the HDRG
  • Activities leading to the promotion of group identity and permanence
  • Activities to Foster Health Disparities Research Capacity
  • Activities Leading to Engagement in Participatory Research
  • Activities Leading to the Dissemination of CBPR Principles and Practice
  • Keys to Success in the Consolidation of HDRG
  • Challenges Encountered and Responses Devised

Read the full article.

Reducing Racial and Ethnic Disparities in Access to Care: Has the Affordable Care Act Made a Difference?

The following excerpt comes from the Issue Brief written by Susan L. Hayes, Pamela Riley, David Radley, and Douglas McCarthy.  It was originally posted to the Commonwealth Fund website on August 24, 2017.


Historically, in the United States, there has been a wide gulf between whites and members of minority groups in terms of health insurance coverage and access. Proponents of the Affordable Care Act (ACA) hoped that law’s major insurance coverage expansions and reforms would begin to bridge those gaps.

Evidence suggests that uninsured rates have declined among blacks and Hispanics under the ACA, but have these coverage gains reduced disparities between whites and ethnic and racial minorities? This brief seeks to answer that question and to examine if disparities in access to coverage and care are different in states that expanded Medicaid and states that did not.

We compared national averages between 2013 and 2015 for white, black, and Hispanic adults on three key measures of health care access to determine the effect of the ACA’s major coverage expansions on disparities:

  • the share of uninsured working-age adults ages 19 to 64
  • the share of adults age 18 and older who went without care because of costs in the past year
  • the share of adults age 18 and older without a usual source of care.

These measures align with those reported in the Commonwealth Fund Scorecard on State Health System Performance, 2017 Edition.

Additionally, we sought to determine if there were differences in disparities in states that chose to expand their Medicaid programs under the ACA and states that did not. For each indicator, we calculated the average rate for white, black, and Hispanic individuals in 2013 and in 2015 in two groups of states: the group of 27 states that, along with the District of Columbia, expanded their Medicaid programs under the ACA between January 1, 2014, and January 1, 2015, and the group of 23 states that had not expanded Medicaid as of that time.

As the current administration and Congress weigh how to move forward after the recent failed attempt to repeal and replace the ACA, it is useful to examine how successful the law has been in making health care available to racial and ethnic groups that have historically been left out.

Findings include:

  • Racial and Ethnic Disparities in Adult Uninsured Rates Narrowed After the ACA’s Major Coverage Expansions
  • Racial and Ethnic Disparities in Rates of Adults Who Went Without Care Because of Costs Narrowed After the ACA’s Major Coverage Expansions
  • Racial and Ethnic Disparities in Rates of Adults Without a Usual Source of Care Narrowed After the ACA’s Major Coverage Expansions
  • Disparities Between Hispanic and White Adult Uninsured Rates in Medicaid Expansion States vs. Nonexpansion States, 2013–2015
  • Disparities Between Black and White Adult Uninsured Rates in Medicaid Expansion States vs. Nonexpansion States, 2013–2015
  • Disparities Between Hispanic and White Adults Who Went Without Care Because of Costs in Expansion States vs. Nonexpansion States, 2013–2015
  • Disparities Between Black and White Adults Who Went Without Care Because of Costs in Expansion States vs. Nonexpansion States, 2013–2015
  • Disparities Between Hispanic and White Adults Without a Usual Source of Care in Medicaid Expansion States vs. Nonexpansion States, 2013–2015

Download the full issue brief.