Health Professionals and the Public Are Unprepared to Make Use of Genomic Medicine
Advances in genomic medicine—the health benefits derived from understanding the human genome—hold promise for the improved prevention, diagnosis, and treatment of common chronic diseases in adults, including heart disease, diabetes, and cancer. However, health professionals and the public are not well prepared to integrate these new tools into practice, according to a recent study led by RAND's Maren Scheuner. The research team reviewed studies on the delivery of genomic medicine for common chronic diseases that were available in the Medline database and published between January 2000 and February 2008. One of the team's key questions was, What are the challenges and barriers to integrating genomic medicine into clinical practice, particularly in the prevention and treatment of common, chronic adult illnesses? Results showed that physicians and patients are optimistic about the potential health benefits of genetic testing, but neither group is well informed about genomic medicine. In particular, primary care physicians feel “woefully underprepared” to integrate genetics into their practices, and consumers are concerned that genetic information could be used to discriminate against them in obtaining or maintaining health insurance or employment. In addition, there are likely too few experts available to meet growing demands for genetic testing. The team also found that information about the added value of genomic medicine for common chronic diseases is limited. Most research to date has focused on patients' well-being after genetic testing, not on whether the testing prevented common chronic diseases, changed treatment, or extended lives. The findings demonstrate a need to educate both health professionals and the public about genomic medicine, conduct studies on the health outcomes of genomic medicine, and develop and evaluate new ways to deliver genetic services.
Healthy Passages: Understanding Pathways to Children's Health
Healthy Passages is a longitudinal study of children's health. Funded by the Centers for Disease Control and Prevention, the study is examining how children's health-risk behaviors and health outcomes change over time and what factors influence these changes. The study is also attempting to isolate factors that cause gender and racial/ethnic disparities in health. RAND and a consortium of research universities (the University of California, Los Angeles; the University of Alabama, Birmingham; and the University of Texas, Houston) are conducting the work in Los Angeles, Birmingham, and Houston. Healthy Passages involves more than 1,700 students in each community who were fifth-graders when originally enrolled, between fall 2004 and fall 2006. The study is designed to track these students and their parents biennially for 10 years to chart changes in their health and examine these changes in relationship to family, school, and neighborhood characteristics; it will soon complete seventh-grade data collection.
Analyses of the data collected so far have begun to yield important findings. For example, a team of Healthy Passages researchers that included RAND's Mark Schuster examined the relationship between children's body image and mental health conditions. Specifically, the study assessed body image discrepancy (BID), which is the gap between the child's ideal body image and his or her perception of actual body image. This gap was measured with a standardized assessment tool that gathered both child- and parent-reported information. Researchers then analyzed the relationship between BID and psychological problems such as anxiety, depression, and low self-esteem. The study concluded that, overall, higher child- and parent-reported child BID scores were significantly associated with these problems among children. The results suggest that early intervention may be indicated to prevent possible adverse consequences. Other analyses are examining a range of issues, including physical activity and nutrition; quality of life; family and peer relationships; school environment, programs, and resources; community characteristics; substance use; injury; violence; and sexual behaviors. The study's ultimate goal is to build a research base to support the development of effective policies and programs to promote health among children, adolescents, and adults.
What Role Does Quality-of-Care Information Play in Consumer Choice of a Medical Provider?
There is growing interest in the potential role of consumers in improving the quality of medical care. The assumption is that consumers who are armed with information about quality of care can choose the highest-quality providers, giving lower-quality providers incentive to improve. But how readily available is information about health care quality? And do consumers use it? RAND Health researchers Katherine Harris and Melinda Beeuwkes Buntin sought answers to these questions. In a synthesis study sponsored by the Robert Wood Johnson Foundation (RWJF), they examined the availability and adequacy of publicly available quality-of-care information and whether consumers used this information to choose health care providers. They found that information on hospital and health plan quality is widely available but that such information on physician groups and individual providers is not. Consumer knowledge that such information exists remains relatively low. According to a recent study, only 24 percent of U.S. adults know that hospital quality information is publicly reported. The primary means of disseminating this information is the Internet, and this information is more likely to influence individuals who are already aware of it. Among consumers who were aware of the information, usage rates were low: One survey reported that only 20 percent of this group used such information when choosing a doctor or hospital. The main reason reported for this low rate was a lack of perceived relevance, rather than a lack of understanding. Despite these results, the research also suggests that consumers are interested in greater access to provider-quality information, particularly on individual physicians. The results also imply that disseminating such information through media other than the Internet would widen the audience for quality-of-care information.
Sign up for the RWJF Web seminar. Presentation by Drs. Harris and Beeuwkes Buntin, TOMORROW, Friday, May 16, 2008, from 1:30 to 3:00 p.m. EDT.
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At the time of the presentation, the Research Brief will become available at http://www.rwjf.org/synthesis.
Maren T. Scheuner
Maren T. Scheuner, M.D., M.P.H. is a Natural Scientist at RAND. She is trained as an internist and medical geneticist and specializes in the field of common disease genetics. Her areas of interests include health services and policy research related to effective and efficient clinical integration of new genetic/genomic technologies. Current research activities focus on evaluation of the clinical validity and utility of family history tools in risk assessment and disease prevention, assessment of genetic testing technologies, and the intersection of health information technology and genetic/genomic medicine. Additionally, Dr. Scheuner is a Research Health Scientist at the Greater Los Angeles VA Medical Center and Adjunct Associate at the UCLA School of Public Health.
Read more work by Dr. Scheuner »
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