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A Path Forward for Genomic Nursing Research

2015; Wiley; Volume: 38; Issue: 3 Linguagem: Inglês

10.1002/nur.21659

1098-240X

Lois A. Tully, Patricia A. Grady,

Nutrition, Genetics, and Disease

Nursing research promotes and improves the health of individuals, families, and communities across the lifespan by using a patient-centered, holistic approach to build the scientific foundation for clinical practice, prevent disease and disability, manage or eliminate symptoms, and enhance end-of-life and palliative care. The National Institute of Nursing Research (NINR), one of 27 Institutes and Centers at the National Institutes of Health (NIH), uses a “disease-agnostic” approach to support biobehavioral research that focuses on four scientific themes: Symptom Science, Wellness, Self-Management, and End-of-Life and Palliative Care. Symptom Science uses an interdisciplinary approach to better understand symptoms and to develop improved and personalized strategies to treat and prevent symptoms. Wellness focuses on promoting health and preventing illness across health conditions, settings, and the lifespan. Self-Management examines strategies to help individuals with chronic conditions and their caregivers better understand and manage their illness and improve health behaviors. End-of-Life and Palliative Care includes research to assist individuals, families, and health care professionals in managing the symptoms and other consequences of life limiting conditions as well as addressing decision making by patients, caregivers, and providers. Cross-cutting goals include innovation and investing in nurse scientists through research training. Additional information on NINR's mission and Strategic Plan can be found at http://www.ninr.nih.gov/. NINR has long supported innovative genomics-based nursing research studies whose findings can be effectively translated into improved health outcomes across the lifespan and in diverse populations (Grady & Collins, 2003). Harnessing emerging genomic discoveries and technological advances, NINR released a number of funding opportunity announcements (FOAs) between 2010 and 2014 to stimulate research in targeted areas (Table 1). NINR also encourages investigator-initiated applications relevant to its scientific focus areas. Examples of NINR-supported genomic studies can be found in Table 2. In addition to research grants, NINR supports research training in genomics through fellowships, institutional training grants, and career development awards. As of mid-2014, approximately 70% of NINR's extramural genomics portfolio was dedicated to research (the majority of those have been research project grants [R01s]) and approximately 30% to research training and career development of nurse scientists. NINR also has a Division of Intramural Research that supports leading-edge research to understand the underlying molecular and behavioral mechanisms related to symptoms associated with a variety of disorders, and to develop clinical interventions to alleviate these symptoms. Science in the intramural research program has included the genomic variability inherent in symptoms associated with digestive disorders, cancer-related fatigue, traumatic brain injury, and post-traumatic stress disorders. Since 2000, the NINR intramural research program has also sponsored the Summer Genetics Institute, which brings students and faculty to the NIH campus for intensive, hands-on training in genomics (www.ninr.nih.gov/SGI). More recently, the intramural research program instituted the Symptom Methodologies Boot Camps, which provide a week-long training opportunity in research methodologies focusing on symptoms and include a genomic component and laboratory experiences. More information on NINR-supported genomic science is available on the NIH Research Portfolio Online Reporting Tools (RePORT) website (http://report.nih.gov/). Additional information on NINR's intramural research program can be found at http://www.ninr.nih.gov/researchandfunding/dir. In 2012, a Genomic Nursing State of the Science Advisory Panel, facilitated by the National Cancer Institute (NCI), the National Human Genome Research Institute (NHGRI), and NINR, established a genomic nursing science blueprint (Blueprint). The Blueprint provided an overall framework and specific research recommendations for advancing genomic nursing science (Calzone et al., 2013). High-priority topics included biological underpinnings of symptom onset/severity, disease risk, and patient outcomes; issues related to genomic communication and decision-making for maintaining wellness or for self-management of chronic illness; and genomic-based interventions to reduce morbidity and mortality. Training future nurse scientists in genomics was also highlighted as a priority. The Blueprint identified gaps and opportunities to focus a genomic nursing research strategy. To further develop the research topics identified in the Blueprint, NINR convened an interdisciplinary Genomic Nursing Science Workshop in August, 2013 to discuss, expand, refine, and further prioritize the research topics in the Blueprint. Blueprint partners from NCI and NHGRI participated in the Workshop planning. In advance of the Workshop, participants submitted one or more high-priority research questions, which were then categorized according to NINR's scientific foci (Symptom Science, Wellness, Self-Management, and End-of-Life and Palliative Care). Fifteen experts from the extramural community participated in the Workshop, which used a consensus-building, interactive “innovative questions” format to meet the Workshop's goals. The Workshop began with presentations on the state of genomic nursing science from research and practice perspectives. Workshop participants then presented their question(s), and the group discussed and refined the questions until consensus was reached on the wording. The questions were then evaluated by a steering committee to determine which questions were most likely to encourage new thinking to guide the science over the next 5 to 10 years. A number of innovative questions on basic, clinical, and behavioral genomic nursing research topics were generated (Table 3). The questions focus on the role of genomics in patients’ symptoms and responses to illness treatment, interactions of genomics with environment, coping, and behavior, applications of genomics in clinical care tools, and other nursing-informed concerns. The questions are available to the public via NINR's web site www.ninr.nih.gov/genomicsworkshop. The information garnered from the Workshop will provide strategic guidance to NINR as well as the broader scientific community in moving forward a research agenda that will advance genomic nursing science. NINR will consider the innovative questions generated by the Workshop when developing future funding opportunities and encourages students and faculty to consider them when developing investigator-initiated research projects. As genomics affects all of NINR's scientific focus areas (Symptom Science, Wellness, Self-Management, and End-of-Life and Palliative Care), the genomic research questions can be considered in conjunction with questions generated in other NINR Innovative Questions Workshops (www.ninr.nih.gov/IQworkshops). Identification of research priorities is a dynamic process that must keep pace with rapidly evolving technologies and genomic advances. The February 2015 NIH Precision Medicine initiative (http://www.nih.gov/precisionmedicine/), calling for individual genetic, lifestyle, and environmental variability to be taken into account in all treatment and prevention, is congruent with the innovative questions set by the NINR Workshop. Nurse scientists have the clinical grounding to be aware of these individual differences, and they are ideally positioned to raise the questions and perform the research needed to translate genomic findings into individualized health care practice. An interactive, collaborative, Innovative Questions approach provided a platform to explore unanswered questions on genomics in nursing research, promote results-oriented research, and guide genomic nursing science in the future. Ultimately, the goal is to build the evidence base for tools and interventions that can be effectively translated into practice for better health outcomes. The nurse scientist community is well-positioned to help realize this goal. The National Institute of Nursing Research gratefully acknowledges the NIH Office of Rare Diseases Research, National Center for Advancing Translational Sciences (http://rarediseases.info.nih.gov/) as a cosponsor of the Genomic Nursing Science Workshop. The authors thank the Workshop participants: Laurie Badzek, Elizabeth Coleman, Yvette Conley, Sandra Daack-Hirsch, Susan Dorsey, Quannetta Edwards, Kathleen Hickey, Debra Lyon, John Quillin, Jacquelyn Taylor, Marjana Tomic-Canic, Angela Trepanier, Susan Vadaparampil, Marcia Van Riper, and Janet Williams, and the planning committee: Joan Austin, Yvonne Bryan, Kathleen Calzone, Ann Cashion, Amanda Greene, Rebecca Hawes, Jean Jenkins, Ann Knebel, Louise Rosenbaum, Carolyn Sampselle, and Gwenyth Wallen.