Blog: National Partnership for Action
Research & Evaluation
Posted on 9/27/2013 by Coleen A. Boyle, PhD, MSHyg, and J. Nadine Gracia, MD, MSCE.
A generation ago, almost 15 percent of children in the United States born with sickle cell disease died before the age of two. Many more died in their teens. 1
Today, babies born with sickle cell disease face a far more promising future. Children and adults can benefit from treatment options that help mediate complications of the disease. According to data from CDC's National Vital Statistics System, the proportion of deaths from sickle cell disease among children decreased from 12 percent in 1979 to approximately 3 percent in 2006. Since the signing of the National Sickle Cell Anemia Control Act 41 years ago, considerable progress has been made in biomedical research, disease surveillance, and care coordination.
But as patients and families know all too well, barriers to care and quality treatment persist. Between 90,000 and 100,000 people in the U.S. currently live with sickle cell disease, making it the most common inherited blood disorder in the country. Minorities bear a disproportionate burden, with the disease occurring in roughly one out of every 500 African American births and one out of every 36,000 Hispanic American births. And far too many have struggled to access the quality care that they need to manage the disease and live a healthy life.
That began to change three years ago, with the passage of the Affordable Care Act.
By directly addressing barriers to care and coverage, the Affordable Care Act has created new opportunities for those living with sickle disease to access affordable, high-quality health insurance and medical services – opportunities that many may never have had before.
Because of the law, sickle cell disease and other pre-existing conditions can no longer be grounds for denial of coverage from health insurers – a provision of the law that would provide security to 129 million Americans with pre-existing conditions.
Young adults living with sickle cell disease can now stay on their parents' health insurance until the age of 26, ensuring smoother transitions from pediatric care to adult care.
In addition, screening for sickle cell disease among newborns is now one of the preventive services covered at no cost under the Affordable Care Act. Thanks to the law, approximately 71 million Americans can now access these screenings and other important preventive services without having to pay a co-pay or deductible.
The law is also helping community health teams to explore new opportunities for improved disease management through the Centers for Medicare & Medicaid Services' (CMS) Innovation Center – and expanding access to care through investments in community health centers, where nearly two-thirds of patients served are people of color.
Meanwhile, agencies across the Department of Health and Human Services are working to make the most of these opportunities. At the Centers for Disease Control and Prevention (CDC), researchers are studying how sickle cell disease is managed at the community level through a state-based project called PHRESH (Public Health Research Epidemiology and Surveillance of Hemoglobinopathies). Using data collected from the program, CDC is helping states build capacity to monitor health system changes stemming from the Affordable Care Act – giving them the tools they need to identify the most effective interventions, highlight quality measures, and zero in on the "hotspots" of chronic conditions where they are needed most.
At the Office of Minority Health, one of the office's strategic priorities – leading the implementation of the first-ever HHS Action Plan to Reduce Racial and Ethnic Health Disparities – includes strengthening the cultural and linguistic competency of the health and health care workforce to improve health care quality and reduce health disparities. And as implementation of the Affordable Care Act continues, the Office of Minority Health's outreach and education efforts in minority communities are helping to reach those living with sickle cell disease and others who stand to benefit most from the health care law.
Three years after its passage, the Affordable Care Act has touched the lives of millions of Americans – including the thousands living with sickle cell disease. And this is just the beginning. On October 1, millions of Americans will have a chance to enroll in affordable health insurance coverage through the new Health Insurance Marketplace, with coverage beginning as early as January 1, 2014. While the fight against sickle cell disease continues, the health care law is giving patients and families affected by sickle disease unprecedented opportunities for improved care and expanded coverage – and new hope for a healthier future.
Learn more about the Affordable Care Act and the Health Insurance Marketplace at www.healthcare.gov.
Posted in: Health Minority Populations OMH Promising Practices HHS Health Disparities Partnership Federal Prevention Affordable Care Act/Health Care Law African American Asian American Health Care Health Equity Hispanic/Latino Promotores/Community Health Workers Research & Evaluation | Comments (1) | Add a Comment | Comment Policy | Permalink
Posted on 9/10/2013 by Alice Dalton
How do we create interventions that can encourage all members of society to be more physically active and eat better diets? It’s a knotty question with many different factors to be considered. One basic element is where the interventions are. We’re pretty sure that good neighborhood design, with well-located resources, can reduce health disparities associated with poverty. However, an intervention is less likely to improve minority health if it’s not accessible to those most in need. I investigated this using the English ‘Healthy Towns’ communities, a group of ethnically diverse towns and cities, including neighborhoods in London, experiencing poverty and ill health. The government had funded health promoting infrastructure in these places. I tested a technique for spatial equity analysis to help us understand what infrastructure was put where, for whom and why.
This technique can be used to identify resource gaps and suggest locations where interventions should be located to address health disparities. The process is relatively straightforward, but you need to be thorough when collecting your evidence. It’s not just a case of drawing, say, a one mile circle around existing play parks and claiming that children living in these areas are well-provided for and those outside aren’t. For example, some locations have more children living there, therefore a higher demand. Or, parks may be plentiful but underused because of their poor quality or poor access. These considerations are crucial for directing infrastructure and other interventions to where they’re needed most.
Overall, this work indicated that spatial equity analysis can be useful as the first step in future evaluations for health interventions, especially when it’s too early to measure direct health impacts. In the case of the ‘Healthy Towns’ program, we found that interventions were generally well-located in areas of highest population need, as determined by program managers. This is a good start, but we’ll need to wait to see if the aims – to make people more active and healthier eaters – will be met.
You can read the full article here .
Posted in: NPA Partners Promising Practices Health Disparities Prevention Health Equity Research & Evaluation | Comments | Add a Comment | Comment Policy | Permalink
Smartphone and mobile apps: An important solution to increasing participation and engagement of minority and underserved communities
Posted on 8/22/2013 by Regina Greer- Smith, MPH FACHE
These are exciting times. Today, technology allows us to advance knowledge and empower members of underserved communities with information at rapid speed and with minimal cost. Considering the use of smartphone and mobile apps may be an important solution to increasing participation and engagement of minority and underserved communities in patient-centered outcomes research and comparative effectiveness research. Patient-centered outcomes research involves research that brings both the patient and providers together for shared decision-making for better outcomes and determining the costs and benefits of one course of treatment over another.
According to the Pew Internet and American Life Project , minorities (along with young adults) are leading consumers of health information via mobile platforms. African Americans and Latinos are more likely to own a mobile phone than whites and outpace whites in mobile app use. African Americans are using Twitter to share information, especially about neighborhood events. This information should be leveraged by researchers to use mobile apps and smartphone technology in research engagement with minorities and underserved communities.
Taking the concept a step further, creating apps that deliver education and information from trusted members of communities – such as ministers, physicians and researchers – could increase wider participation because of the trust and relationships that are already in place.
As an example, an innovative research project to engage African American women in research is now underway. Women stay connected using a smartphone app to learn about breast cancer, receive messages about the importance of participation in clinical trials and connect with researchers who they select to work with.
Developing mobile apps to include education and resources about the benefits of participating in patient-centered outcomes research and topics of interest to minority populations could increase their participation and involvement. Consider the possibilities for raising awareness and advancing health equity in research through mobile apps:
Developers and researchers must be aware that patients, caregivers and other community stakeholders are key partners in the development of mobile apps, because mobile apps are being developed for their use to enable and increase their participation – and not solely for the use of the researcher as a recruitment vehicle.
In January, 2013, Regina Greer-Smith, along with a team of healthcare professionals, formed The Midwest /Partners Patient Engagement Cluster , (MPPEC) resulting from involvement with The Patient-Centered Outcomes Research Institute (PCORI), a non-profit organization created from the Patient Protection and Affordable Care Act in October 2012. MPPEC’s mission is to engage patients and researchers in patient-centered outcomes research (PCOR) and comparative effectiveness research (CER).
Posted in: Health Minority Populations NPA Partners Promising Practices Health Disparities Prevention African American Health Care Health Equity Hispanic/Latino Minority Health Research & Evaluation | Comments (1) | Add a Comment | Comment Policy | Permalink
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