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.

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UAB to launch statewide genetics initiative for better health for all Alabama residents

The following is an excerpt of the article by Bob Shepard Posted on UAB News.


The University of Alabama at Birmingham — Alabama’s leading provider of genomic and precision medicine — has launched the Alabama Genomic Health Initiative in partnership with HudsonAlpha Institute for Biotechnology to better meet health needs across the state.

The project, funded by a $2 million appropriation from the Alabama legislature to UAB, supports one of the nation’s first statewide efforts to harness the power of genomic analysis to help identify those at high risk for a genetic disease, and provide a basis for continuing research into genetic contributors to health and disease.

“This initiative could be transformative for the state of Alabama,” said Selwyn M. Vickers, M.D., senior vice president for Medicine and dean of the UAB School of Medicine. “We will use the knowledge gained from the AGHI to begin to uncover more undiagnosed diseases, and will potentially rewrite our understanding of the burden of disease on our population. This project can have tremendous impact on the residents of Alabama and stimulate economic development in the state.”

The AGHI will recruit a diverse group of participants from every county in Alabama and provide genomic analysis and interpretation to this group free of charge. For some, the results will indicate an increased risk of a disease for which preventive or treatment strategies exist. Those participants will receive genetic counseling and be linked to appropriate medical care. The initiative will also feature a public education campaign about genomic medicine and create a DNA biobank for research.

In the first year, the initiative plans on recruiting 2,000 individuals who will provide a DNA sample from a simple blood draw. Over a five-year period, the goal will be to increase the database to include genetic information from more than 10,000 persons.

“Since the Human Genome Project was completed in 2003, we’ve learned a tremendous amount about the roles of genes in disease,” said Bruce R. Korf, M.D., Ph.D., chair of the UAB Department of Genetics and co-director of the AGHI. “This project will result in immediate health benefits to some participants, and in the long term will help to address problems of chronic disease and rising health care costs in the state. It will also position Alabama as a leader at the forefront of 21st century medicine.”

The AGHI will engage citizens throughout the state and their health providers in the use of genomic information to guide medical care.

“This initiative advances the tremendous work already being done in genomics at HudsonAlpha and at UAB,” said Richard M. Myers, Ph.D., president and science director of HudsonAlpha Institute for Biotechnology. “Genomics is dependent on several factors, data being one of them. Undoubtedly, individuals will benefit from the AGHI; additionally, the initiative could lead to identification of new genetic diseases and new treatments for those conditions that will benefit Alabamians and the rest of the world. Through the AGHI, we can help make our citizens healthier, and demonstrate the value and power of genomic medicine in creating a new paradigm for health care. HudsonAlpha is proud to partner with UAB for this groundbreaking initiative.”

Read the full article.

 

Meet the Community Advisory Board of the Sentinel Surveillance Project

The Sentinel Surveillance to Monitor Progress toward Health Equity project of the CHC’s Center for Excellence aims “to develop and implement a surveillance system to capture the information necessary to monitor progress towards health equity for health disparate populations.” Members of the Community Advisory Board (CAB) are community leaders who work in the research focus areas target by the project. Since the inception of the project in 2011, CAB members have provided the research team with important insight for choosing data collection sites and guidance in interpreting and understanding the collected data. The CAB members include:

Click on the links above to read more about the experiences of each of the CAB members in working with a multi-year research project.

Pipeline Students Present at Medical Student Research Day

On July 28, 2017, participants in the Medical Student Summer Research program presented on their projects. Among the eight oral and 55 poster presentations, five students were participants in the Center for Healthy Communities Undergraduate Research Program and two were undergraduate medical students who have multi-year connections to the CHC.  

Ms. Destini Smith, a second year USA Medical student, gave an oral presentation entitled “Access to Employer Provided Health Insurance in Low Income Communities.” Her work was sponsored by Dr. Kenneth Hudson of the Department of Sociology, Anthropology, and Social’ Work, and Dr. Errol Crook, Abraham A. Mitchell Chair and Professor Department of Internal Medicine and Director-Principal Investigator of the Center for Healthy Communities.poster collage

The poster presentations included:

  • Treatment of Hepatitis C Infection in HIV Infected Patients in Inner City Clinics, presented by Verlisa Kennedy, a first year USA medical student was sponsored by Dr. Eduardo Calderon, Division of Infectious Disease.
  • Health Policy and Child Poverty: An Illustration of the Social Determinants of Health presented by Aryne Hudson, a junior at Montevallo University was sponsored by Dr. Errol Crook, and Shannon M. Shelley-Tremblay, from the Center for Healthy Communities
  • Access to Employer Provided Health Insurance in Low Income Communities presented by Jasmine Mabry, sponsored by Dr. Kenneth Hudson of the Department of Sociology, Anthropology, and Social’ Work, and Dr. Errol Crook, Abraham A. Mitchell Chair and Professor Department of Internal Medicine and Director-Principal Investigator of the Center for Healthy Communities.
  • CASPASE-1 Levels are Elevated in Diabetic Patients Residing in Health Care Disparity Areas of Mobile County presented by Andrew Spriggs, a sophomore at UAB was sponsored by Diego Alvarez, M.D., Ph.D., Department of Physiology and Cell Biology, Center for Lung Biology and Center for Healthy Communities, University of South Alabama College of Medicine, Mobile, AL.  
  • Telehealth Enhanced Education for Patients Living with Diabetes in Rural Alabama, presented by Elizabeth Torrance, sponsored by Jessica Hardy of the Alabama Public Health Department in Montgomery and Dr. Alethea Hill of the College of Nursing.
  • A Mouse Model To Test The Cytotoxic Immune Response To Intracellular Antigens presented by Raven Walker, sponsored by Dr.  Victor Solodushko and Dr. Brian Fouty, Departments of Pharmacology and Internal Medicine in the College of Medicine.
  • College Student Obesity Prevention Program: Pilot Study, presented by Christen Carter, Sponsored by Sharon Fruh, Ph.D., RN, FNP-BC, Rebecca J. Graves, Ph.D., Heather Hall, Ph.D., Debra Swanzy, DNP, Theresa Wright, DNP, College of Nursing.

The summer program included 9-weeks of hands on research and a seminar program focused on various scientific and clinical topics.

See the full list of abstracts from the Medical Student Research Day.

poster collage

 

CAB Member Profile: Porsche Blount

Porsche profile
Porsche Blount

The Sentinel Surveillance to Monitor Progress toward Health Equity project aims to develop and implement a surveillance system to capture the information necessary to monitor progress towards health equity for health disparate populations. One key element of this project is the engagement of community members through a Community Advisory Board (CAB). Recently, Ms. Porsche Blount, a native Mobilian and community health activist and advocate, shared a little about her reasons for participating in the CAB and the importance of continued investment in research.

Tell us a little bit about yourself and your background.

I’m a graduate of Dillard University where I majored in biology and chemistry. I originally intended to attend medical school but shifted professionally to community health education.  I have two beautiful daughters that fuel the synthesis of my passions for health education and working with the youth. My hope is that we can prevent health issues by working with the youth; in other words, stopping problems before they start.

How did you become involved with the Community Advisory Board for the Sentinel Surveillance Project?

Years ago, I became a Community Health Advocate as a part of the community engagement core of the Center for Healthy Communities. A woman named Brittany Duncan, the health education specialist at the time, knew my professional background and suggested that my knowledge might be helpful as a member of the CAB.

Why did you decide to become part of the CAB?

I had experience in both community work and research. From this, I knew there wasn’t really any middle ground between the two. Research isn’t knowledgeable about the community and vice-versa. Participating in the CAB seemed like an opportunity to bridge the two areas.

Give us a few highlights of your time as a CAB member. Is there any one memory that stands out?

For me, the opportunities presented by being a part of the CAB have been the most meaningful. Through the connections made from working with Dr. Arrieta, Dr. Crook and the Center for Healthy Communities I had the opportunity to become a part of the Regional Community Engagement Consortium within the UAB Center for Clinical and Translational Science.

What community needs are you most concerned about?

First, I think about the way we define community needs. In my opinion, the community needs resources to address socioeconomic barriers. The socioeconomic impacts on health are far more wide-ranging than we’ve ever considered. The community needs life resources to impact the things that affect their health.

How do you see the sentinel surveillance project addressing these issues in the community?

I see two contributions from the Sentinel Surveillance Project. First, the way we carried out the project was an opportunity for relationship building between research and the community. I saw this in the way the project was established and the way we let community members know that research is vital to getting help and resources. In the long-term, I believe, the project has opened that door to encourage underserved communities to voice their needs.

Secondly, the data is an opportunity to look at what we know and understand from the literature and look at it from a focused community level. Once we can disseminate to local agencies it will effect change locally. It’s a local answer to a nationwide solution.

Have you ever been involved in research before, if so how is this similar or different?

I have been involved in research projects but this is really different. This is my first experience with community-based participatory research (CBPR). It can be defined as CBPR since the community was actually, actively involved. Also, being on the CAB was the first time for me to serve in that capacity rather than being the researcher.

What have you learned about research through this process?

I’ve learned a lot. The process also confirmed something that I already knew: there is no one size fits all approach to improving health outcomes. This is the biggest lesson.

Has the experience changed the way you consider or approach research in other areas of your life?

It truly has because throughout the process analytical breakdown we’ve done on the collected data. I can’t help but implement the lessons in my day-to-day life. This is true both personally and professionally. It forces me to take into consideration where people are. We are studying peoples knowledge of diseases and we can’t make any assumptions. Again, both personally and professionally, it has made me more open and considerate.

Would you encourage others people in your life to participate in or be a part of leading/shaping research projects as a result of your involvement with Sentinel Surveillance?

I would.  Truthfully, one of my biggest takeaways for underserved communities is the element of distrust when it comes to research. As a member of that community, I understand where this comes from but there has to be a way to encourage people to understand that there is good research, beneficial research. So, for me, if more people could have this experience then it could help break down barriers.

Medicine Is Getting More Precise … For White People

The following excerpt is from an article by Rob Arthur published August 2, 2017, on FiveThirtyEight.


Every human on earth is unique — our genes are different, we eat different things, we live in different places. As a result, medical treatments tend to work differently on different people. Depending on your genes, a drug might cure your sickness — or it might cause a side effect that makes you sicker.

In the past, many of humanity’s individual variations were invisible to us, but today, new technology offers us a way to peer into each person’s genome, allowing doctors to personalize treatments for each patient. This approach, called precision medicine, has been a major focus of research and investment in the last few years.

But precision medicine only works if scientists have studied people who are similar to you. If your genes are rare or unusual compared to those researchers have examined in the past, you could end up getting the wrong treatment. Since the vast majority of genetics studies are done on people of European ancestry, members of other racial groups may lose out on the benefits of precision medicine entirely. Those same groups already often receive worse health care in the United States than people of European descent get, and personalized medical treatment could make the gap in care larger.

Precision medicine is based on the idea that genes can be linked to diseases. To study this, scientists assemble a group of people, some with a disease and some without, and identify their genetic differences. If particular differences are common among the people who have the disease and absent from the people without it, then scientists can infer that those genetic patterns might be involved in the disease.

But each person has their own catalogue of genetic characteristics. Some are common in people of certain ancestral backgrounds and rare in those from other backgrounds. If scientists exclusively study individuals of one ethnic group, they may not know how to refine their treatments for a person from a different group.

A 2009 analysis of the studies that can link a genetic variant to a disease or trait showed that fully 96 percent of participants were of European descent. In a 2016 commentary in the journal Nature, Alice Popejoy and Stephanie Fullerton, respectively a graduate student and a professor at the University of Washington, showed that these studies had grown more diverse and people of European ancestry now account for 81 percent of research subjects. “Things are getting better, and it’s still pretty darn slow,” Fullerton said in an interview. And of the progress that has been made, much of it is attributable not to an increase in diversity in U.S. research but to studies conducted in Asian countries, which involve local participants.

Disparities in biomedical research exacerbate an existing gap in U.S. health care. African-Americans and Latinos are less likely to have health insurance and more likely to suffer from chronic diseases. Even controlling for wealth differences between populations, African-Americans receive worse health care.

The science underlying precision medicine threatens to make these disparities worse because it could leave any genetic differences that primarily affect non-white groups unstudied. Some genetic differences are prevalent in one population and rare in another. A prominent example is a gene called APOL1. Differences in this gene are common in people whose ancestors are from sub-Saharan Africa but rare in those of other backgrounds. Some of these variations increase the risk of developing kidney disease more than sevenfold, but they also seem to confer protection against African sleeping sickness. Knowing a patient’s APOL1 genetic makeup might be useful for guiding kidney disease treatment, and APOL1 is likely one of many genes that must be studied within a nonwhite population.

It’s possible to solve the problem of underrepresentation. The National Institutes of Health fund a number of large-scale genetic research projects in the United States, and scientists there consider this a major issue. “We are aware of this situation, and work is being funded to rectify the situation,” said Charles Rotimi, an investigator at NIH. He pointed to initiatives like Human Heredity and Health in Africa and the Population Architecture using Genomics and Epidemiology Consortium. These projects are developing more diverse study populations to address the underrepresentation of people of non-European ancestries, in some cases going to African countries to collect genetic data. In the United States, individual investigators can also apply for smaller-scale NIH grants to study particular diseases.

Read the full article.

The Affordable Care Act and Women

In August, the Commonwealth Fund released the issue brief How the Affordable Care Act Has Helped Women Gain Insurance and Improved Their Ability to Get Health Care Findings from the Commonwealth Fund Biennial Health Insurance Survey, 2016. The brief explores how the Affordable Care Act (ACA) reforms on women’s insurance coverage and access to care. Prior to the law’s consumer protections implemented in 2010, women faced obstacles to buying health insurance in the individual market:

  • Being turned down
  • Charged a higher premium because of their health
  • Had specific health problems excluded from their plans.

To understand how the ACA’s consumer protections, researchers analyzed data from the Commonwealth Fund Biennial Health Insurance Surveys covering 2001 to 2016. Findings include:

  • After rising steadily through 2010, the number of uninsured women in the U.S. had fallen by nearly half in 2016.
  • Women with low incomes have made gains in coverage across race and ethnic groups
  • Young women have made the greatest coverage gains of any age group since 2010.
  • More women have coverage through Medicaid and the individual market since the ACA’s passage.
  • Women in Texas and Florida are more likely to report being uninsured compared to women in California and New York
  • The ACA’s individual-market reforms and subsidies have made it easier for women to buy health plans on their own.
  • Fewer women say they are not getting needed care because of cost.
  • There has been a modest reduction in reports of medical bill problems by women.
  • Insured women were more likely to receive cancer screenings than uninsured women in 2016.
  • Insured women are more likely to have a regular source of care and receive preventive services.

Download the full issue brief.

The Messenger Also Matters: Value-Based Payment Can Support Outreach To Vulnerable Populations

 

The following excerpt comes from the July 10, 2017 article by Ruth C. Browne, Marilyn Fraser, Judith Killen, and Laura Tollen on the Health Affairs Blog.


With the proliferation of value-based payment initiatives and implementation of the Affordable Care Act’s (ACA’s) coverage expansions, states have had many opportunities in recent years to improve the health of vulnerable populations through health promotion, prevention, and care coordination. We believe value-based payment models can and must support accountable health care delivery systems in partnering with community-based “messengers” to engage vulnerable individuals in health education and promotion. We explore one such messenger program, ACCESS, a Brooklyn-based project of the Arthur Ashe Institute for Urban Health, which trains barbers and hairstylists to help formerly incarcerated men learn to recognize and act upon their own health risk factors. Value-based payment offers an opportunity to support programs such as this.

“Messengers,” as we define them here, are community health workers—those who serve “as a liaison/link/intermediary between health/social services and the community to facilitate access to services and improve the quality and cultural competence of service delivery.” Unfortunately, there are few dedicated funding streams available to support the messenger role. Fee-for-service payment arrangements do not reimburse these activities. Value-based payment, on the other hand, not only highlights the need to support messengers but also potentially provides funding to do so.

Value-based payment programs hold the health care delivery system accountable for meeting health goals for entire enrolled or attributed populations, which requires more than just providing better medical care. Shortfalls in medical care are responsible for only an estimated 10 percent of early mortality in the United States, while individual health-related behavior is responsible for 40 percent. Even the finest delivery system can only expect to see a modest improvement in the health of its community if it focuses only on the very thing it has been designed to do—providing medical care to sick people. Value-based payment requires delivery systems to redefine nothing less than their product, place, and providers. The product must be health; the place must be where people live and work; and the providers must include credible, community-based messengers.

Credible messengers can bring to delivery systems important knowledge about social determinants of health that impact individuals’ ability to access and act upon health-related information. We focus here on one social determinant—incarceration. Individuals formerly incarcerated have become eligible for Medicaid in large numbers and, as such, participate in a variety of value-based payment initiatives. New York State, where the ACCESS program has been implemented, is moving aggressively toward value-based payment in Medicaid. In 2015, the state announced its intention to shift 80–90 percent of its Medicaid managed care provider payments from fee-for-service to value-based arrangements by 2020.

In the United States, nearly 700,000 state and federal prisoners are released annually, and more than 11 million cycle through local jails. Incarcerated individuals have poorer physical health status than the rest of the population, a high burden of mental health and substance abuse disorders, and, once they are released, are more likely than the general population to be uninsured. However, under the ACA, more than one-third of inmates released annually from state and federal prisons are estimated to be Medicaid-eligible. If this pattern holds true for those released from local jails as well, there are potentially millions of formerly incarcerated individuals newly eligible for Medicaid—and for the value-based payment initiatives that may come with it.

The burdens of incarceration are distributed unevenly. Sixty percent of New York State prisoners come from New York City, and two-thirds of the 28,000 people released each year return to the city. Some Brooklyn neighborhoods have especially high incidences of incarceration and concomitant prison spending, earning them the dubious honorific of “million-dollar blocks,” even though they are among the poorest neighborhoods in Brooklyn.

At the Arthur Ashe Institute for Urban Health (AAIUH), we found a striking overlap between Brooklyn’s million-dollar blocks and areas where we were already engaged in health-promotion activities. Founded in 1992, the AAIUH is an independent, nonprofit organization that collaborates with community members to incubate, test, and replicate neighborhood-based interventions to improve health conditions disproportionately affecting minorities. Arthur Ashe, a world-renowned African American tennis champion and social justice advocate, founded the AAIUH in partnership with the State University of New York Downstate Medical Center. Using community-based participatory research, the AAIUH navigates disparate worlds—the institutional universe of academic medicine and day-to-day life in multi-ethnic, multi-linguistic neighborhoods.

Among other projects, the AAIUH has a long history of training barbers and hairstylists to deliver health education related to breast cancer, cardiovascular disease, asthma, and diabetes in women, and HIV/AIDS and prostate cancer in men. When we began the ACCESS program in 2009, exploratory work revealed that more than 80 percent of barbers working in our ongoing projects had themselves spent at least one night in jail. This made them particularly credible messengers for our priority population of formerly incarcerated men and the supportive women in their lives. Guided by input from a community-based advisory board, we conducted focus groups of barbers, stylists, and customers to determine the best way to discuss incarceration and health, and which health issues would be most important to the community. Based on that input, the program emphasized cardiovascular disease, stress, and HIV/AIDS. We developed a health curriculum to increase awareness of these conditions, emphasizing prevention and the importance of “knowing your numbers”—that is, understanding health indicators such as blood pressure and cholesterol levels. The curriculum included a resource guide for community health and social services related to the priority conditions and services for the re-entry population.

We trained barbers and stylists to deliver the curriculum in six establishments in the Bedford-Stuyvesant and Crown Heights areas of Brooklyn, emphasizing that health messages must be delivered in a way that could be useful to any member of the community who might know someone who had been incarcerated, instead of focusing solely on the formerly incarcerated themselves. In addition to the health messages and the resource guide, ACCESS included an HIV-focused health education video played several times a day in participating salons and barbershops and 12 AAIUH-sponsored Health Resource Days held at these establishments.

The project evaluation consisted of pre- and post-intervention surveys of patrons. The pre-intervention survey assessed patrons’ familiarity with risk factors, prevention, and resources related to the priority conditions. For example, patrons were asked multiple-choice questions such as: “What are some of the warning signs of a heart attack? What is a normal blood pressure reading?” The post-intervention survey of the same individuals sought to determine whether they had been exposed to the intervention and whether their knowledge regarding any of the previously asked questions had changed. Survey respondents’ ability to identify ways to assess their cardiovascular disease risk increased from 44 percent to 62 percent, and understanding that condom use can decrease the spread of HIV increased from 77 percent to 88 percent.

Read the full article.

Glimpses of Community Engagement

Community engagement calls for cultural humility, patience, and the building of authentic relationships. In a series of short videos from the Division of Community Engagement at Virginia Commonwealth University, faculty members describe their personal experiences of working with community partners. The six videos discuss:

  • Why community engagement?
  • Cultural competencies
  • Community partners as co-educators
  • The nontraditional learning script
  • Why I identify as a community-engaged scholar
  • Breaking Down Silos

The videos are all available on YouTube.

CAB Member Profile: Reverend Michael Johnson

 

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Reverend Michael Johnson

The Sentinel Surveillance to Monitor Progress toward Health Equity project aims to develop and implement a surveillance system to capture the information necessary to monitor progress towards health equity for health disparate populations. One key element of this project is the engagement of community members through a Community Advisory Board (CAB).  Recently, Reverend Michael Johnson, pastor of Faith Lutheran Church in Mobile, shared a little about his experiences with the CAB.

 

Tell us a little bit about yourself and your background.

I was born in Mobile and attended local public schools. After high school, I attended Bishop State Community College and, then, the University of South Alabama where I studied Civil and Structural Engineering. I completed my Master of Divinity at Concordia Theological Seminary in Fort Wayne, IN.  Before my pastorate here in Mobile, I pastored churches in Detroit, Birmingham, Memphis, and Baltimore.

How did you become involved with the Community Advisory Board for the Sentinel Surveillance Project?

I became involved by request of a previous [research office] employee, Andrea Hudson. She was aware of my years of community activism and involvement in providing initiatives for change.

Why did you decide to become part of the CAB?

We need to address the health disparities that cause much brokenness in our communities.  Participation in the CAB offers an opportunity to participate in important research that helps us understand these disparities and help mend the brokenness in our community.

Give us a few highlights of your time as a CAB member. Is there any one memory that stands out?

I appreciate the meetings, brainstorming ideas for effective health change, workshops and collaborating with others of the interest. If I had to identify a single memory/experience that has piqued my interest the most, that would be my recommendation and participation in the Bayou Health Disparity Fellows Program, of which I graduated May 9, 2017.

What community needs are you most concerned about?

Health Disparity change, diabetes, hypertension, obesity, drugs and alcohol addictions.

How do you see the sentinel surveillance project addressing these issues in the community?

Specifically, Dr. Arrieta’s sharing of information discovered through the research and community experience helps to educate also. Because of her personal interactions, it allows us to build relationships that are loving and caring for one another.

Have you ever been involved in research before, if so how is this similar or different?

I have been involved with research before on the data collection side. I desire to extend my interest is collaborating in academic, clinical trials and community samples through education and photovoice.

What have you learned about research through this process?

I learned that there are many causes of Health Disparity. There are also, needs and means for change, including policy change that would dissolve determinants causes.

Has the experience changed the way you consider or approach research in other areas of your life?

Yes, my viewpoint has changed tremendously. I am better educated and more motivated to be involved in the partnership and seeking means for health change for self and community.

Would you encourage others people in your life to participate in or be a part of leading/shaping research projects as a result of your involvement with Sentinel Surveillance?”

Yes, would definitely as I am encouraging others to get involved, get educated, participate and share in the movement of better health – better life.