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The translation of genetics/genomics to clinical care has implications for nurses. The Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics, established by consensus, apply to all registered nurses. Learning outcomes and clinical practice indicators have been developed to provide additional guidance.
The Essentials Advisory Group (EAG) established a team to establish the Outcome Indicators. A draft was developed based on published, peer reviewed documents and syllabi. The draft underwent three layers of review: 1) critique by the EAG; 2) review by representatives at a Genetics/Genomics Toolkit for Faculty meeting; 3) review by workshop attendees at AACN Baccalaureate and Master's Education Conferences; followed by EAG final approval.
Outcome Indicators clarify specific knowledge areas and suggest clinical performance indicators for each competency. They provided the foundation to establish a competency based education repository with outcome indicator mapping matrixes for genetic/genomic education resources. A gap analysis of education resources identified resource deficits and online unfolding case studies were developed.
Outcome Indicators assist the academic and continuing education nurse community to prepare the nursing workforce in genetics/genomics and provide a platform from which to build tools needed to achieve this goal.
The top fifteen leading causes of mortality in the United States all have a genetic and/or genomic component with heart diseases, cancers, and cerebrovascular diseases representing the top three causes of mortality (Heron, 2009). Improved understanding of the contribution of genetics and genomics to the cause and treatment of these chronic illnesses is resulting in: improved identification of at risk individuals; targeted risk reducing interventions; enhanced screening; improved prognostic and therapeutic decision-making; novel, individualized therapy; and medication dosing and selection based on the genetic variation of drug response. For example, family history ascertainment and analysis is already viewed as one of the easiest genetic assessment tools. Using family history in practice as part of the multi-disciplinary health care team approach can improve recognition of potentially problematic genetic/genomic diseases, inform the differential diagnosis, and aid in risk stratification to inform risk management decision-making (Berg, 2009).
Clearly, the impact of these advances is not limited to the practice of genetics specialists. Rather, health care professionals in all areas will increasingly use genetics/genomics technology and information to improve the health of those they serve. Further, consumers empowered by the proliferation of information technology are seeking, accessing and purchasing genetics tests without the guidance of healthcare professionals (Hunter 2008). These consumers are often unprepared for the psychosocial impact of the results they receive. Confused and uncertain about what to do, they take the results to their health care professional to seek clarification and guidance. Yet, health care professionals' lack of knowledge about genetics/ genomics limits their ability to interpret those results, provide appropriate counseling or refer to professionals who can provide the necessary services (Scheuner, 2008).
Preparing the entire nursing workforce to deliver genetically and genomically competent health care is vitally important to the successful translation of genetic and genomic discoveries into practice and quality health care outcomes. Nurses represent the largest group of health care professionals, generally have greater interaction time with patients, and as a consequence are uniquely poised to incorporate genetics/genomics information and services into practice as it becomes clinically appropriate (Calzone, 2010). Preparing the current and future nursing workforce to merge these scientific advances into practice implies that nursing curricula, educational texts, resources and practice experiences are available to faculty as well as those in nursing staff development.
To address these challenges, in 2004 the National Human Genome Research Institute and the National Cancer Institute of the National Institutes of Health joined together to establish the Genetic/Genomic Nursing Competency Initiative (GGNCI). Leaders of the GGNCI then partnered with the American Nurses Association to begin planning for a broad US based nursing workforce genetic/genomic education initiative that focused on both the academic and practicing nursing communities. The work began with establishing by consensus The Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics (Consensus Panel on Genetic/Genomic Nursing Competencies, 2006), a guide for academic education, continuing education, and specialty certification. The Genetic/Genomic Nursing Competency Initiative steering committee approached the task with the focus of identifying the essential knowledge and performance competencies necessary for all nurses. The competencies build on existing scope and standards of nursing practice and help guide individual continuing education, academic curriculum, professional organization continuing education and specialty certification (Jenkins, 2007). The Essential Genetic/Genomic Nursing Competencies do not represent the opinion or position of an individual, single nursing organization or government body. Instead, the competencies represent a consensus of the nursing community, endorsed by forty-nine nursing organizations and establish the minimum genetic and genomic competency required of every nurse regardless of academic preparation, role, practice environment or clinical specialty.
Implementation of the competencies has since been the priority for the Genetic/Genomic Nursing Competency Initiative. An additional Advisory Group of federal, academic, and national nursing leaders was established which identified, reviewed, analyzed, and compared successful change initiatives. A 5 year strategic implementation plan was drafted during an invitational meeting held October 22-24, 2006 with key stakeholders from the 49 endorsing organizations. The framework for the 5 year implementation plan focused on practicing nurses, regulatory/quality control issues, academics, and infrastructure. Outcomes from this meeting included complete consensus on a recommendation to further expand the Essential Competencies to include learning outcomes and clinical practice indicators for each specific competency. Additionally, faculty advisors requested increased guidance as to what knowledge, skills, and attitudes would be reflective of competency and indicative of needed course content. In response, a project focused on creating outcome indicators was initiated with the intent that they would include specific areas of knowledge needed for each competency and suggested clinical practice indicators that demonstrate proficiency of the competency.
The overall timeline for development and consensus of the Outcome Indicators is illustrated in Figure 1. The first step to create the learning outcomes and clinical practice indicators was to establish an Outcome Indicator Development Team from the Essential Competency Advisory Group (Outcomes Team). The Outcomes Team identified, reviewed, analyzed, and synthesized outcome indicators in existing published, peer reviewed literature, and existing education syllabi. For example, the outcome indicators developed by the United Kingdom Fit for Practice in the Genetic Era: A Competence Based Education Framework for Nurses, Midwives and Health Visitors were especially helpful in establishing a framework for the indicators as well as suggestions for content (Kirk, 2003). A draft of the Outcome Indicators was then drafted and submitted for review and approval to the Advisory Group. Recommended modifications were then added or revised.
For a second level of review, the draft Outcome Indicators were then presented at the Genetics/Genomics Toolkit for Faculty meeting held September 14, 2007. This faculty meeting consisted of representatives from the Competency endorsing organizations including the American Association of Colleges of Nursing (AACN), the National League for Nursing (NLN) as well as members of the Genetic/Genomic Nursing Competency Initiative Advisory Group. Consensus was achieved on the format of the Outcome Indicators to define Specific Areas of Knowledge and Clinical Performance Indicators for each individual competency. Their comments were then integrated into the revised Outcome Indicators. All participants were offered opportunity for an in depth review of the revised Outcome Indicators after the meeting. Valuable guidance was received from all in depth reviewers which included leadership representatives from both the AACN and NLN. These reviewers made content suggestions, specific wording changes for clarification, recommendations for measurable outcome indicators including deletion of assignments that do not demonstrate competency proficiency, and suggestions to reduce redundancy.
Lastly, the draft Outcome Indicators were presented to Baccalaureate and Master's nursing faculty attending a genetic/genomic workshop at the AACN Baccalaureate Education Conference in November 2007 and the AACN Master's Education Conference in February 2008. Each participant was given a copy of the complete draft of the Outcome Indicators. The workshop included a presentation of the Outcome Indicators and development process to date. Participants were then offered the opportunity to submit comments following the session either in person or later via email. The consistent recommendation at these workshop reviews was to include overlapping content and performance indicators enabling users to view all recommended knowledge and performance indicators for a single competency. All comments were reviewed by the Outcomes Team and revisions were incorporated as indicated. A final draft of the Outcome Indicators was then brought back to the Advisory Group for review and final approval.
The Outcome Indicators (see Table 1) are an adjunct to the Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics and are not intended to be prescriptive. Instead, the Outcome Indicators clarify the specific areas of knowledge associated with each competency and make suggestions for clinical practice indicators. To be consistent with the Essential Competencies, the definitions utilized are identical and use client to encompass individual, families, communities and populations. In addition, genetic and genomic information is used as the context for defining knowledge and practice indicators for each competency. The second edition of the Essential Competencies which included these Outcome Indicators is available in the form of a monograph titled Essentials of Genetic and Genomic Nursing: Competencies, Curricula Guidelines, and Outcome Indicators, 2nd Edition or can be downloaded online as a pdf at http://www.genome.gov/Pages/Careers/HealthProfessionalEducation/geneticscompetency.pdf.
The Outcome Indicators coupled with the Competencies have provided the foundation to address another critical recommendation from the Competency Strategic Plan: Establish a Clearinghouse of Genetics/Genomics Education Resources and Tools. The web based toolkit education repository that is under development is a multi-disciplinary initiative including both nurses and physician assistants. The repository utilizes a mapping matrix for peer reviewed genetic/genomic education resources to discipline specific competencies, specific areas of knowledge, and clinical performance indicators. All listed resources include a detailed description that provides an overview, cost, resource lifetime, target audience, learner levels, activity type, and copyright information. The Genetic/Genomic Competency Center (G2C2) is in the final phases of development but can be accessed at http://www.g-2-c-2.org.
Lastly, compilation and peer review of world-wide genetic/genomic education resources for the toolkit education repository identified genetic/genomic education resource gaps. Findings from the gap analysis identified critical areas of need for supplemental genetic/genomic education materials surrounding issues such as cultural competency, direct to consumer marketing and testing, as well as genetics and genomics of common diseases. The gap analysis helped to target another recommendation from the Competency Strategic Plan: Develop Educational Resources and Tools. To address the identified gaps, online unfolding case studies are under development which target use by faculty for entry level nursing students. The Global Genetics/Genomics Community (G3C): http://www.g-3-c.org is a portable web-based, bilingual (English/Spanish), interactive, self-paced and self-directed, unfolding case study platform utilizing professional actors as simulated patients. Each encounter incorporates student education activities and resources. Faculty support is designed around the Essential Competencies including suggestions of how to use this material in curriculum and courses. Current cases are ethnically diverse, focus on family history assessment, direct to consumer marketing/testing, family issues, personal assessment, and the genetics/genomics of diabetes and cardiovascular disease. The goal is to evaluate this educational methodology as a way to teach genetics/genomics concepts and issues and continue to add clinically applicable cases.
The progress of this genetic/genomic nursing competency effort has universal implications for all nurses but most especially nursing faculty who are responsible for preparing the future nursing workforce. The Outcome Indicators (Table 1) build on the Essential Competencies which were established by consensus and provide a guide for achieving each competency. The overarching intent of the Outcome Indicators is to both further enable the academic and continuing education nurse community to prepare the nursing workforce in this science as well as provide a platform from which to continue to build the necessary support tools needed to achieve a genetically and genomically competent nursing workforce. Through utilization of such tools, educators will be able to prepare the nursing workforce to take advantage of the opportunities and face the challenges encountered as we move forward in realizing the potential benefits of genetics and genomics in clinical care.
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