Dr. Sandra Daack-Hirsch's research focuses on using genomic information to help patients make more informed decisions about their health. - The University of Iowa College of Nursing

The University of Iowa College of Nursing

Dr. Sandra Daack-Hirsch's research focuses on using genomic information to help patients make more informed decisions about their health.

What is the focus of your research? Give a brief overview. What questions are you trying to answer? What problems are you attempting to solve?

The focus of my research is to increase patients’ ability to effectively utilize the rapidly increasing availability of genomic information so that they can make more informed decisions concerning their health. With our increasing ability to detect genetic variation and attribute this variation to risk for disease, it is inevitable that discussions between healthcare providers and patients will increasingly include information about genome-based risk. Effectively conveying genetic risk information is becoming more complex because of technical advances made possible through the Human Genome Project such as genome wide association and whole genome sequencing. In order to talk about risk, providers typically use numeric data; therefore numeracy, the ability to think about and use numeric data, is a skill needed to comprehend and effectively communicate risk information.

Unfortunately, results from national survey studies indicate that Americans in general have relatively low numeracy levels. Research provides evidence that the understanding of risk is markedly influenced by patient and provider numeracy levels, as well as the type of risk communication methods used. These can include presenting relative versus absolute risk, framing risk in terms of positive gains versus negative loss, and describing risk quantitatively versus qualitatively. What is currently unclear is if there are preferred ways to present risk that would depend upon patients’ and providers’ numeracy levels.

What led to the development of interest in this topic?

My clinical practice influenced my interest in the topic of how people understand and use genome-based risk information. I have used genetic counseling in my clinical practice for over 17 years and I know that patients struggle to understand genome-bases risk. Clinicians also struggle to find the best way to talk about risk and do not really know how genome-based risk information influences the choices patient’s make regarding their health. My research begins to address a need to investigate how genome-based risk information is conveyed and how it influences health, particularly the decisions people make regarding their health. This need was also identified by Drs. Francis Collins, Erick Green, Alan Guttmacher and Mark Guyer on behalf of the US National Human Genome Research Institute as a priority area for future genomics research.

What impact do you predict coming from this research? (on citizens, practice environment, educational opportunities, funding, etc.?)

This study is a unique look at genomic literacy, based upon numeracy. I expect that findings from my research will lead to the development of an evidence-based framework for the testing and implementation of tailored risk communication interventions, based in part on patients’ numeracy levels. I also expect to utilize findings from my research to test risk communication interventions beyond genetic counseling settings. My research has the potential to have a positive impact on effectively communicating risk in all areas of health.

How does the research integrate into education/practice/service?

Alzheimer’s disease, hypertension, suicide, and Parkinson’s disease are among the top fifteen leading causes of mortality in the United States; congenital malformations, deformations and chromosomal abnormalities are the leading cause of infant deaths in the; and it has been estimated that in the US over 106,000 people will die from an adverse effects from prescribed medications and millions will experience serious side effects. All have a genetic/genomic component and are to some extent influenced by environmental factors and lifestyle. Due to the chronic nature of many of these illness and/or the pervasiveness of these illness in our population, nurses are ultimately involved in the care of these individuals and their families through health promotion and illness prevention; diagnosis, ongoing treatment and management; and prescribing, dispensing, and monitoring the use of prescribed medications.

Over the next decade advances in genomics will make it increasingly possible to provide personalized health care based on genetic-based risk information. Nurses are particularly well situated to provide genome-based health care. As a profession, nurses have knowledge of patient’s (families and community) perspectives of illness, understanding of biologic underpinnings for illness, communication skills, and the public’s trust. Findings from my research will provide nursing educators and practicing nurses with potential strategies to integrate genome-based into the personalized care they provide.