LINKS: Minority Research & Training - Fall 2009October 15, 2009
- From Childhood Dreams to Research Aspirations—Reflections from NIA Summer Institute on Aging Research Participants
- HANDLS—Bringing Health Disparity Research to the Neighborhood
- Dr. Yvette Roubideaux: Former NIA RCMAR Scholar Named Indian Health Service Director
- Emmy Award-Winning The Alzheimer’s Project Reaches Millions of Viewers, Continues to Provide Educational Resources about Alzheimer’s Disease
- New NIA Clinical Research Information Resources
- Measuring Disparity—NIA RCMAR Workshop
- Scenes from the 2009 Summer Institute on Aging Research
- Join NIA’s Health Disparities Resource Persons Network
- About the Summer Institute on Aging Research
From Childhood Dreams to Research Aspirations—Reflections from NIA Summer Institute on Aging Research Participants
“When I grow up I want to be…” How would you have completed that sentence when you were 5 or 6 years old? Maybe you wanted to be an astronaut or an inventor or something unrelated to science, like a football player, movie star, or firefighter. Whatever your early aspiration, it was likely motivated by what you considered exciting and interesting at the time.
Participants in the National Institute on Aging’s (NIA) 2009 Summer Institute on Aging Research were asked how their childhood dreams relate to their current research career. Here’s some of what they shared...
Sandy Chang, M.D., M.H.S.
In grade school, I dreamed of becoming a writer or a journalist. I was fascinated by people’s unique stories, especially those of my grandparents and other older adults. My interest in listening to the details of other people’s lives is what motivated me to pursue a career in medicine and clinical research.
As a family medicine resident, I noticed that many of my older adult patients with multiple chronic diseases were progressively having difficulty with basic everyday tasks. What struck me was that their greatest desire was to stay in their own homes and remain functionally independent. This experience and the memory of my grandparents led me to shift my focus to the healthcare needs and problems of older adults. A clinical and research fellowship in geriatrics helped me to better understand how chronic diseases contribute to functional decline and subsequent disability in older adults. Now, at Yale University’s Department of Internal Medicine, Section of Geriatrics, I research how inflammation leads to the development of chronic disease in older people.
Reflecting back, I realize that my childhood dream became reinvented with my evolving interests. Given my love of listening to other people’s stories, I am more attentive to the details necessary to make clinical diagnoses and perform meticulous research as a clinician investigator.
Kerstin Gerst, Ph.D.
I grew up in an environment where you either learned a trade or you got married. No one went to college, let alone discussed being something as vague sounding as a scientist. Personally, I wanted to be a flight attendant though I had never been on an airplane! I had several defining moments on my way to a career in research. Consistently, they involved a mentor inspiring me and someone allowing me to actually do things hands-on. Now, as a researcher at the University of Texas Medical Branch, I study the impact of immigration on mental and physical health of older Hispanic people and examine the influence of living in ethnic neighborhoods on their health.
Nupur Ghoshal, M.D., Ph.D.
After seeing the King Tut exhibit at Chicago’s Field Museum when I was 3, I wanted to be an archeologist. Next I wanted to be a paleontologist—I was fascinated by dinosaurs. In both cases, my emphasis was on discovering and exploring the unknown. This is echoed in my current research efforts.
The summer before my senior year in high school, I was in a fellowship program funded by the National Institutes of Health, U.S. Department of Agriculture, and Department of Energy. My 6-week internship extended to the whole summer. During that time, I developed my first research project from beginning to end. I submitted my project to the Westinghouse Science Talent Search Competition and was named a top 40 finalist. That was my first taste of science and success; I was hooked!
Today, at Washington University School of Medicine, I study frontotemporal dementia (FTD). I am developing a model of inherited FTD in the test tube and a mouse model, which I hope will help researchers understand the disease and test future therapies.
Ruth Palan Lopez, Ph.D., G.N.P.-B.C.
When I was growing up, I wanted to be a “high nurse” though I was unable to articulate what I meant by this goal. Now, as a gerontological nurse practitioner, I see my drive to understand how people respond to health and illness and my passion to improve care for older adults directly relates to my childhood goal.
Early in my career, I provided care to older adults in nursing homes. One afternoon, a patient asked me to sit beside her and gently held my face in her hands. Looking me squarely in the eyes, she said, “Ruth, I have lived a long time. I am 101 years old. I have had enough. Please, give me something to end my life now before things get worse for me.” I explained that I did not have power over the length of life, but that I would do everything I could to ensure she had comfort and quality to her days. Shortly thereafter my patient had a stroke robbing her of the ability to talk and move. She became totally dependent on others. So, sadly and despite my best efforts, I was not able to keep my promise. This defining experience led to my research career. I now study end-of-life care in nursing homes at MGH Institute of Health Professions. My goal is to find ways to improve care for older people, especially those with dementia who cannot advocate for themselves.
Prasad R. Padala, M.D.
I knew when I was younger that I wanted to be a doctor. I mainly wanted to take care of people and make a difference in their lives. I was also pretty sure I wanted to work with older patients as I often saw that people were too busy to spend time with them. Research was a more gradual interest that developed over my medical training as I became frustrated about the inefficacy of treatment options for people with dementia. I also was encouraged by mentors who continue to be really interested in my academic growth.
I started researching treatment of apathy (a profound loss of motivation), a common behavioral problem in people with Alzheimer’s disease. One vivid memory is when the wife of one of my patients thanked the team for giving her husband back to her. She told us that after 5 years of apathy, her husband is now more motivated to go out and participate in life. Experiences like this keep me going. Currently at the University of Nebraska Medical Center and Omaha VA Medical Center, I remain focused on use of medications and therapy to treat apathy in people with dementia, and I look at the impact of apathy treatment on functional status, caregiver burden, and quality of life. I also have expanded my research to study the treatment of apathy in patients with poorly controlled diabetes to see if it can help them better control their blood sugar.
Nancy Phaswana-Mafuya, Ph.D.
Growing up in a remote area of Africa, I wanted to be the best I could be. My family struggled because we had hardly any means. However, I was very curious to find answers to questions, especially difficult and challenging questions. After my graduate degree, I started doing research. The more research experience I gained, the more I enjoyed it, and the more I wanted to continue doing it. I remember the first time that I attended a scientific conference. I was fascinated by the researchers sharing the results of their studies and the impact of their work in influencing policy. Later, when I did my first qualitative research project, I was very excited to uncover rich, in-depth information that I would have never known if I did not do the study. It was thrilling to generate new knowledge.
I am currently Research Director in the Social Aspects of HIV/AIDS and Health Research Programme at the Human Sciences Research Council in southern Africa. I design and implement surveys as well as analyze and disseminate research findings. I am also a Principal Investigator of the Study on Global Ageing and Adult Health (SAGE), the first population-based longitudinal survey on aging and health among individuals aged 50+ in South Africa. The survey is a collaboration with the World Health Organization and is co-funded by the NIA and the South African National Department of Health. The goals of SAGE are to promote a better understanding of the effects of aging on well-being; to examine the health of people age 50 and older and identify the changes, trends and patterns that occur over time; and to improve the capacity of researchers to analyze the effects of social, economic, healthcare, and policy changes on current and future health.
Melissa Simon, M.D., M.P.H.
I grew up in a very impoverished part of Detroit. I saw firsthand what it was like not to have one’s needs met—to experience the effects of many types of disparities—particularly with respect to health and disease. From these powerful experiences stems my sincere desire to work with and expand research on women who are considered disenfranchised and medically underserved.
As an obstetrician-gynecologist and subspecialist in women’s reproductive health at Northwestern University’s Feinberg School of Medicine, I aim to bring evidence-based public health practice and research to the field of older women’s health. Currently, I am working on a patient-navigator-based intervention model designed to help medically underserved women with abnormal breast and cervical cancer screening-test results move through the healthcare system more efficiently and effectively. Patient navigators are specialized community health workers who can leverage their intimate knowledge of communities, language, culture, and resources to work with patients to overcome obstacles to healthcare entry and follow-up.
About the Summer Institute on Aging Research
The NIA’s annual Summer Institute on Aging Research just completed its twenty-third year. It continues to be a unique opportunity for early and mid-career researchers to learn from NIA scientists and grantees about designing successful research projects, applying for funding, and overcoming challenges of ethnic and minority aging research. Over the course of 7 days, participants attend 20 plenary sessions on a range of topics including the NIA research portfolio, media training, statistical analysis, and grant support. Participants also attend smaller, more intimate breakout sessions during which a top scientist leads a discussion about a specific research-related issue, responds to questions about the trials and tribulations of being an investigator, and offers advice on ways to be successful. These plenary and breakout sessions lead up to a mock study section in which participants present and review grant applications from the perspective of an NIA scientist. To learn about the 2010 Summer Institute on Aging Research and how to apply, please see "Join NIA’s Health Disparities Resource Persons Network" below.
NIA’s research portfolio includes a variety of research projects aimed at better understanding health disparities in hopes of one day closing these gaps. Research on diversity is funded nationwide as well as conducted by NIA’s intramural scientists in Baltimore, Maryland. One notable example of this intramural research is the Healthy Aging in Neighborhoods of Diversity across the Life Span or HANDLS study. Now in its fifth year, HANDLS researchers investigate the differences in rates and risks for diseases and other conditions associated with aging among approximately 4,000 African American and White participants of low and higher socioeconomic status (SES). The study also looks for differences in longevity.
“What makes HANDLS unique is its community-based approach. Instead of expecting participants to come to a study site, the study site comes to them via a mobile medical research vehicle. We are able to reach non-traditional research participants that way,” explains Michele Evans, M.D., Co-Principal Investigator of HANDLS and Deputy Scientific Director of NIA’s Intramural Research Program.
Another unique feature of HANDLS is that participants (who were between the ages of 30 and 64 when they entered the study) are followed over time, or longitudinally. The plan is to reexamine participants every 3 years over the course of 20 years. Observing participants as they age will help researchers determine the influence of socioeconomic status and race on age-related changes. In HANDLS, low SES is defined by an income below 125% of poverty level. These observations will also help identify early biomarkers of age-related health disparities that could prevent or ameliorate the severity of diseases such as hypertension or diabetes. Ultimately, researchers hope to use the longitudinal data collected about participants’ cognitive, psychophysiological, and physical function to characterize the relationship between race, socioeconomic status, and health outcomes.
In the paper, “Effects of race and socioeconomic status on the relative influence of education and literacy on cognitive functioning,” published in the Journal of the International Neuropsychological Society (July 2009), HANDLS researchers present some new findings pertaining to the relationship between reading ability and cognitive function. The analysis found that for both low- and higher-SES African Americans and low-SES Whites, reading ability is a stronger predictor of cognitive function than years of education. Traditionally, years of education have been used in neuropsychological tests for establishing norms and as a demographic correction in overall performance. This research is another step in helping to clarify how quality of education may be more important than years of education.
“Our findings perhaps relate to a larger issue facing African Americans and low-SES Whites. That is, people from certain backgrounds are more likely to have poor-quality education for a variety of reasons. Consequently, quality of education—reflected by reading level—could be more important than quantity of education for predicting cognitive function,” says Alan Zonderman, Ph.D., Co-Principal Investigator of HANDLS and Chief of NIA’s Intramural Cognition Section.
As HANDLS moves forward, researchers continue to develop new research questions and ways to strengthen the study. For example, several years ago investigators started a second wave of HANDLS: The Association of Personality and Socioeconomic Status with Health Status—An Interim Follow-up Study.
Researchers examine if there is any relationship between personality, the conditions where people are raised, and health. In this second wave, researchers also hope to learn more about participants’ eating habits and examine the effects of race and socioeconomic status on nutrition.
“By looking more closely at nutritional habits and personality—defined as emotions, thoughts, preferences—and behaviors unique to a person, we hope to learn more about the natural course of certain diseases. This may help us understand why some Americans have higher rates and more severe manifestations of those diseases,” shares Zonderman.
HANDLS researchers recently began wave 3 of the study, the first follow-up examination on the mobile medical research vehicles. During this wave, researchers will look at changes in health status over time that are associated with race and socioeconomic status.
To learn more about HANDLS and the paper, “Effects of race and socioeconomic status on the relative influence of education and literacy on cognitive functioning,” please visit the study website at http://handls.nih.gov.
Yvette Roubideaux, M.D., M.P.H, a member of the Rosebud Sioux Tribe of South Dakota, was confirmed as director of the Indian Health Service (IHS) on May 6, 2009, by a unanimous vote of the U.S. Senate. She is the first woman to hold this position.
“It is an honor to be named the ninth director of IHS and to be the first woman director. I am humbled by the response I’ve received. Many American Indian and Alaska Native people have said that they can now encourage their daughters to aspire to become the director of IHS,” says Roubideaux.
IHS, part of the U.S. Department of Health and Human Services, was established in 1955 as the principal Federal healthcare provider and health advocate for the American Indian and Alaska Native populations. Today, the IHS serves approximately 1.9 million people representing 562 federally recognized tribes in 35 states.
Roubideaux was introduced to IHS at a young age. “My first encounter with the healthcare system was as a patient in the IHS,” she recalls. “I remember waiting several hours to see a doctor, who was never an American Indian. This childhood experience inspired me to become a doctor. IHS is so important to so many people and as a physician I wanted to help IHS and the American Indian and Alaska Native communities it serves by improving the quality of healthcare.”
The drive to make a difference in the health of American Indians and Alaska Natives led Roubideaux to become clinical director and medical officer of IHS’s San Carlos Service Unit on the Apache Indian reservation. After serving as a medical officer at the Hu Hu Memorial Hospital on the Gila River Indian Reservation in Arizona, Roubideaux returned to Harvard University (where she had received her medical degree) to get her Master of Public Health. “I thought I could make a larger impact on the quality of health care through research,” she explains. Her research career started with funding from the NIA.
Roubideaux’s advice to early career researchers interested in American Indian and Alaska Native communities:
I would stress the importance of learning as much as you can about health needs of these elders. This includes reviewing the research that has been done so far and learning about researchers in this area. Tribes are sovereign nations and have a role in conducting research—you cannot do research without approval of the tribe. You should consider tribal leadership as partners in the research project. Tribes want research that can help identify the needs of members, but respect for the role of culture and language is critical for researchers (and physicians) to take into consideration when designing and implementing studies.I also would emphasize that you cannot do research alone. It involves collaboration with a team. Do not try to do things single-handedly. When working on any research, regardless of the topic, it is important for you to have a group that you can bounce ideas off of and mentors who can teach you skills beyond the classroom. And, this community can also help with your career advancement.
In 1998 to 2000, Roubideaux was selected for what was then a new training program with the Native Elder Research Center (NERC) at the University of Colorado, one of NIA’s Resource Centers for Minority Aging Research (RCMAR). “As a RCMAR scholar, I obtained skills to help me become a successful investigator.” She also benefited from the guidance of a mentor, Spero Manson, Ph.D., who is the Principal Investigator of the University of Colorado RCMAR. “I was fortunate to interact with a network of 30 to 40 researchers, representing a wealth of experience. This program formed the basis for the rest of my research career,” says Roubideaux.
While in the program, Roubideaux began to study quality-of-care issues with diabetes patients and diabetes prevention programs. Diabetes and other chronic diseases like heart disease, high blood pressure, and stroke are the most prevalent health issues among older American Indian and Alaska Native populations according to Roubideaux. Part of the reason, she explains, is because people are living longer. Another reason for this increase in chronic disease is because these populations are moving beyond the reservation, and the lifestyle in the United States can be a risk factor.
After completing the Native Elders RCMAR program, Roubideaux joined the NERC faculty at University of Colorado (and the faculty at University of Arizona, College of Public Health and College of Medicine) and became a mentor to subsequent RCMAR scholars. “I think it is just as important to be a mentor as it is to have a mentor. I’m sitting here as director of IHS because of support and mentorship of a large group of people,” says Roubideaux.
“Dr. Roubideaux has demonstrated great dedication to the health needs of the American Indian and Alaska Native populations throughout her career, and I congratulate her on being named director of IHS. I am proud that her history includes participation and leadership in the NIA’s RCMAR program,” says NIA Director Richard J. Hodes, M.D.
As director of IHS, Roubideaux will continue her mission to improve quality of health care for American Indians and Alaska Natives. “Each of my experiences has been a building block, leading me to this point. I look forward to applying the skills and perspective as a doctor, researcher, and American Indian to my new position as director of IHS.”
Emmy Award-Winning The Alzheimer’s Project Reaches Millions of Viewers, Continues to Provide Educational Resources about Alzheimer’s Disease
Critics and viewers agree: the Emmy Award-winning documentary series The Alzheimer’s Project is television worth watching. The HBO four-part film series originally aired in May 2009 and was offered nationwide, for free, by participating television service providers. The series presented millions of viewers with a compelling look at the advances and challenges of Alzheimer’s research, as well as the human faces behind the disease. The Alzheimer’s Project films are: “GRANDPA, DO YOU KNOW WHO I AM?” WITH MARIA SHRIVER, capturing what it means to be a child or grandchild of an Alzheimer’s patient; THE MEMORY LOSS TAPES, chronicling the experiences of seven people living with Alzheimer’s; MOMENTUM IN SCIENCE, the story of scientific discovery that takes viewers inside the laboratories and clinics of 25 leading scientists and physicians; and CAREGIVERS, focusing on the lives of five people caring for their loved ones with the disease.
THE MEMORY LOSS TAPES received an Emmy for Exceptional Merit in Nonfiction Filmmaking, and “GRANDPA, DO YOU KNOW WHO I AM?” WITH MARIA SHRIVER won an Emmy for Outstanding Children’s Nonfiction Program. MOMENTUM IN SCIENCE garnered an Emmy nomination. The Alzheimer’s Project also received the Television Critics Association award for Outstanding Achievement in News and Information.
The Project was co-presented by HBO Documentary Films and NIA, National Institutes of Health, in association with the Alzheimer’s Association, Fidelity Charitable Gift Fund, and the Geoffrey Beene Gives Back Alzheimer’s Initiative.
“Outreach and public accessibility are defining features of The Alzheimer’s Project,” said NIA Director Richard J. Hodes, M.D. “Aside from the series reaching millions of viewers when it aired in May, the core films and companion materials continue to reach the public for free in a variety of ways.”
The Alzheimer’s Project offers a rich and easily accessible source of educational and outreach materials. The original films can be viewed for free on the HBO website at www.hbo.com/alzheimers, and on YouTube and Facebook. There are also a wide range of free Alzheimer’s resources, including supplemental films featuring interviews with scientists, a video glossary, and links to NIA’s Alzheimer’s Disease Education and Referral (ADEAR) Center, www.nia.nih.gov/alzheimers, and other research and support organizations. Supplemental films on the HBO site provide a more in-depth look at research, while an additional set of short films geared toward the scientific community is hosted on the Alzheimer’s Research Forum Web site at www.alzforum.org.
NIA has several new information resources to support clinical researchers:
- Clinical Research Study Investigator’s Toolbox. Developed by NIA’s Division of Geriatrics and Clinical Gerontology, this web-based information repository includes templates, sample forms, guidelines, regulations, and other materials to assist investigators in creating and conducting the highest quality clinical research studies. Find the toolbox at www.nia.nih.gov/about/minority-aging-and-health-disparities.
- Clinical Trials and Older People—Tips from the National Institute on Aging. You can give this consumer tip sheet to potential participants. It answers basic questions about clinical trials, including why do clinical trials need older and diverse participants, what should people ask when thinking about taking part in a clinical trial, and how is a trial participant’s safety protected. The tip sheet is free and can be ordered in single and bulk quantities at www.nia.nih.gov/health or by calling 1-800-222-2225.
- Participating in Alzheimer’s Disease Clinical Trials and Studies Fact Sheet. This fact sheet is written for potential participants. It describes Alzheimer’s clinical trials and studies, explains their scientific design, and offers key facts and questions to consider about volunteering for Alzheimer’s clinical research. The fact sheet is free and available in single and bulk quantities from the NIA Alzheimer’s Disease Education and Referral Center, www.nia.nih.gov/alzheimers or 1-800-438-4380.
Like the old adage, “you can’t compare apples to oranges,” when studying the nature of health disparities, you must use measures that accurately reflect diverse populations. For example, in some cultures, it is impolite to openly disagree with a stranger, while other cultures are more argumentative. Therefore, asking questions with a scale of strongly agree to strongly disagree to people from those two cultures may produce very different results even if the underlying condition is identical.
To help researchers determine what constitutes acceptable levels of equivalence and what to do when evidence indicates that a measure does not reflect an underlying condition in the same way in different populations, NIA’s Resource Centers for Minority Aging Research (RCMAR) will be hosting a Pre-Conference Workshop at this year’s Scientific Meeting of The Gerontological Society of America (GSA). The workshop, “Using, Adapting, and Modifying Existing Measures for Studies of Diverse Population Groups,” will summarize issues involved in evaluating equivalence, offer strategies for making modifications, and describe approaches for understanding the consequences of modifying scales for use with diverse groups. Case studies will illustrate how to make modifications and implement them in your study design. Participants will also have the opportunity to discuss the workshop information and how to apply it to their research.
“The workshop will be a great opportunity for newer researchers to learn from seasoned experts in the field,” says Sidney M. Stahl, Ph.D., NIA’s RCMAR program officer and a branch chief at NIA’s Division of Behavioral and Social Research.
The workshop will be held on Wednesday, November 18, 2009, from 8:00 a.m. to 4:00 p.m. in Atlanta, Georgia. For more information, please contact Pamela Jackson, Program Administrator for the Resource Centers for Minority Aging Research Coordinating Center, at firstname.lastname@example.org.
NIA is now accepting applications for participation in the 2010 Summer Institute on Aging Research. This 7-day workshop for investigators new to aging research is focused on current issues, research methodologies, and funding opportunities. The Summer Institute on Aging Research is one of the premier short-term training opportunities for new investigators in aging research. The 2010 Summer Institute will be held July 10–16 in Queenstown, MD. Support is available for travel and living expenses. Applications are due Friday, March 5, 2010. Minority investigators are strongly encouraged to apply. Applicants must be U.S. citizens, non-citizen nationals, or permanent residents. For additional information and an application form, contact Andrea Griffin-Mann at 301-496-0762 or email@example.com.
NIA encourages investigators who have experience working with diverse populations and older adults to register to be an expert resource for the Health Disparities Resource Persons Network. Please visit: www.nia.nih.gov/about/minority-aging-and-health-disparities.
Links: Minority Research and Training newsletter is published twice a year by the Work Group on Minority Aging, Office of the Director, National Institute on Aging. Thanks to Writer/Editor Megan Homer and Contributor Peggy Vaughn. This is an administrative document.
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