Genomics Competency: Why Psychiatric Nursing?

Genomics Competency: Why Psychiatric Nursing? Jean Jenkins PhD, RN, FAAN Senior Clinical Advisor, NHGRI June 26, 2009 Top Ten Leading Causes of Mortality in the US Cerebrovascular 8% Chronic Lower Respiratory 7% Accidents 6% Cancer 30% Diabetes 4% Other 11% Influenza/Pneumonia 3% Alzheimer's 4% Kidney 2% Septicemia 2% Heart Disease 34% National Center for Health Statistics. http://www.cdc.gov/nchs/fastats/deaths.htm 1

Definitions Genetics study of individual genes and their impact on relatively rare single gene disorders Genomics study of all the genes in the human genome together, including their interactions with each other, the environment, and other psychosocial and cultural factors Question 1 1. Most mental health disorders result from both genetic and environmental contributions (genomic) rather than as a result of a single gene alteration (genetic). a) True b) False Genetic Influences Across the Health Care Continuum Prognosis/ Treatment Screening/ Diagnosis Disease Progression Initiation/ Prevention Management of end of life 2

Question 2 2. Genetic/Genomic information may be of value in the following healthcare situations: a) Risk prediction for a health problem b) Determining best drug and dose for treatment c) Discovering new therapies for disease treatment d) All the above e) None of the above Risk prediction Pharmacogenomics New Therapies My father had schizophrenia. Am I at risk? Drug dose of antidepressant determined by drug metabolism genomic profile Gene-based drug therapy for alcoholism Gene therapy for bipolar disease Across The Life Continuum Lena 3

We need: Better ways to assess who is at risk Better screening methods Better strategies for prevention (lifestyle, chemoprevention) Better therapies Predisposition Genetic Testing May have meaning for other family members Kevin https://familyhistory.hhs.gov/ 12 4

Question 3 3. My family health portrait is: a) A wonderful painting of my family b) An online resource available for family history documentation c) A publication developed by the U.S. Surgeon General d) Part of an electronic health record e) All the above Genome Wide Association Approach to Common Disease: The View from 2008 Identify an optimum set of 300,000 tag SNPs Collect 1000 cases and 1000 controls (Community Based Participation Research) Genotype all DNAs for all SNPs That adds up to 600 million genotypes In 2002, $10 billion for each disease completely out of the question Genotyping just dropped to $0.0010, so that s s $600,000 for each disease 2007 first second third 2006 2005 quarter Second First 2007 quarter fourth quarter quarter 2008 2008 Manolio, Brooks, Collins, J. Clin. Invest., May 2008 5

Following from GWAS Drug discovery novel pathways Treatment selection right drug, right dose Prognosis how will the disease affect you Disease risk prediction panels of markers http://www.genome.gov/26525384 Behavioral/Disease Question 4 4. Consumers are very interested in access to genetic/genomic services. What is their greatest concern about this new technology/information? a) Fear of discrimination b) Implications for family members c) Cost d) Quality e) What can be done to improve their health 6

Public Perception Main concern of consumer: What can be done to improve the outcome of my health? Awareness, interest, access, outcomes, decisions, fears of discrimination, cost What is GINA? A federal law that prevents health insurers and employers from discriminating based on an individual s s genetic information The bill is intended to allow Americans to take advantage of the benefits of genetic testing without fear of losing their health insurance or their jobs What will GINA do? Prohibit health insurers from requesting or requiring genetic information of an individual or their family members, or using it for decisions regarding coverage, rates, or preexisting conditions. Prevents employers from using genetic information in decisions regarding hiring, firing, promotion or any other terms of employment (e.g., benefits) The law specifically includes participation in research that includes genetic services (genetic testing, counseling, or education). 7

GINA s Core Protections: Genetic testing and genetic information that reveals an increased risk of future disease, such as breast and ovarian cancer, Alzheimer disease, colon cancer, Huntington disease Family History DNA or RNA based pharmacogenomic tests (for example, cytochrome p450 testing by DNA chip) GINA does NOT cover: Manifest disease someone who is already sick Use of genetic information in regard to life, long-term care, or disability insurance Members of the military Question 5 5. GINA is a federal law that prevents health insurers and employers from discriminating based on an individual s s genetic information. What is covered by this legislation? a) Genetic testing and genetic information b) Family history information c) Pharmacogenomic test information d) All the above e) None of the above 8

Multiplex Genetic Susceptibility Testing: A prototype for applied research to inform personalized medicine Colleen M. McBride, PhD. & Larry Brody, Ph.D. Research Partners: National Human Genome Research Institute Henry Ford Health System Group Health Cooperative Cancer Research Network (NCI) Nursing Tanker There are more than 2,900,000 nurses as of March 2004 2,915,309 current licenses to practice as registered nurses 2,421,351 employed in nursing 1,360,847 in a hospital setting U.S. DHHS (2005). The Registered Nurse Population: Findings from the National Sample Survey Of Registered Nurses, March 2004., HRSA, Bureau of Health Professions, ons, Division of Nursing. 9

Advanced Practice Nursing Tanker 8.3 % of the RN population, were prepared for advanced practice U.S. DHHS (2005). The Registered Nurse Population: Preliminary Findings F from the National Sample Survey Of Registered Nurses, March 2004., HRSA, Bureau of Health h Professions, Division of Nursing. Nursing Background Genetic and genomic content is not consistently incorporated into 2007 NCLEX-RN RN Detailed Test Plan Examination to evaluate entry-level nursing competence of candidates for licensure as registered nurses Perform health history/health and risk assessments (e.g., lifestyle, family and genetic history) Based on practice analysis conducted every 3 years of nurses A systematic evaluation of genetic/genomic content in post registered nurse certification examinations has not been completed National Council State Boards of Nursing. (2007). 2007 NCLEX-RN RN Detailed Test Plan. https://www.ncsbn.org/2007_nclex_rn_detailed_test_plan_candidate.pdf.pdf Year of Graduation from Nursing School U.S. DHHS (2005). The Registered Nurse Population: Preliminary Findings F from the National Sample Survey Of Registered Nurses, March 2004., HRSA, Bureau of Health h Professions, Division of Nursing. 10

Nursing Academic Landscape 1626 schools of nursing accredited by either the Commission on Collegiate Nursing Education and/or the National League for Nursing Accrediting Commission Barriers to Incorporating Genetics and Genomics into Nursing Curricula 2005 Nursing Faculty Survey (N=224)( AIM: DetermineD status of genetics content in nursing curricula and compare to 1996 faculty survey 29% of schools reported no genetic or genomic curriculum content (no change from 1996) Barriers Curriculum too full (92%) Faculty not knowledgeable about genetics (59.4%) Not high enough priority (34.4%) Not covered in NCLEX (24.6%) Not important for certification (10.3%) Not essential to nursing care (9.4%) Not applicable or relevant to nursing practice (2.2%) Prows, C., Calzone, K., Jenkins, J. (2006). Genetics content in nursing curriculum. Proc. of NCHPEG. Estimated Curricular Time Spent on Genetic Content Categories 11

Genetic/Genomic Nursing Competency Initiative Establish pathways to Influence diffusion of innovation Social system and receiver variables Knowledge Methods of persuasion Strategies to facilitate continued adoption Decrease the time to adoption Overall goal is to improve health outcomes through the appropriate use of genetic/genomic information and technology Academics Practicing Infrastructure Regulatory Academics Genetic/Genomic Nursing Competency Initiative 10/2002 10/2007 9/26/1995 Core Competencies in Cancer Pilot Test of Survey Workshop for Genetics 9/21-22/2005 22/2005 Genetics for Advanced Practice Instrument Assessing Education for Nurses Genetics/Genomics Oncology Nurses Nursing Competency in Nursing Consensus Genetics/Genomics 2003 Conference 6/2005-3/2007 9/28-29/2000 29/2000 9/2008-9/2010 9/2010 Genetics Nursing Ethics Sigma Theta Tau Series HRSA Expert Panel Development Global Survey Completed/Published Genetics For Nursing Genetics and Nursing Genetics/Genomics Community 10/23-24/2006 24/2006 Unfolding Case Study Simulations 2004 Strategic Implementation Competency Initiative Planning Meeting 9/14/2007 Launched Genetics, Genomics 9/2008-9 2005 Meeting with AACN Development Repeated Genetic/Genomic Nursing Faculty Tool Faculty Tool Kit Faculty Survey-Compared Kit Development GERTIE with 1996 data 1995 2000 2005 2006 2007 2008 2009 2/27/2007 Testimony on AACN Baccalaureate Essentials 3/2009 AAN Genetics/Genomics Nursing White Paper 9/2009 AAN State of Science 7/27/07 Planning Meeting 10/2006 First Issue of Competency Competency Monograph Distributed Focus Newsletter Published to all Nursing Schools and State 2/2009 Boards of Nursing Outcome Indicators Published 10/20/2006 Established Nursing Competency Listserv Question 6 6. The overall goal of the genetic/genomic nursing competency initiative is to improve health outcomes through the appropriate use of genetic/genomic information and technology. a) True b) False 12

The Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics Define essential genetic and genomic competencies for ALL nurses regardless of level of academic preparation, practice setting ting or specialty. Guide curriculum content based on the current state of the evidence. Provide the basis for evaluating nurse competence in genetics and d genomics including: NCLEX, Certification Maintaining Licensure Prepare the nursing workforce to deliver competent nursing care in the genomic era of healthcare. Endorsement Status 49 organizations have endorsed including American Academy of Nursing American Association of Colleges of Nursing American Nursing Association American Nurses Credentialing Center American Psychiatric Nurses Association International Society of Nurses in Genetics National Coalition for Health Professional Education in Genetics National League for Nursing National League for Nursing Accrediting Commission Oncology Nursing Society Sigma Theta Tau Unsolicited, endorsements have been received from schools of nursing Strategic Implementation Plan October 22-24, 24, 2006 Key stakeholders from educational institutions, professional associations, certifying bodies and regulatory agencies Infrastructure Practicing Nurse Academics Regulatory 13

Question 7 7. The Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics are applicable: a) Only to students enrolled an academic programs b) To all nurses regardless of level of academic preparation, practice setting or specialty c) Only to nurses in clinical practice d) Only to psychiatric nurses 14

Executive Summary This document emphasizes such concepts as patient- centered care, interprofessional teams, evidence-based practice, quality improvement, patient safety, informatics, clinical reasoning/critical thinking, genetics and genomics,, cultural sensitivity, professionalism, and practice across the lifespan in an ever-changing and complex healthcare environment. Baccalaureate Faculty Response 74% rated their own person knowledge of genetics and genomics as low or very low 83% either agreed or strongly agreed that preparing nurses to use genetic and genomic information was an important role for nurse educators 93% agreed or strongly agreed that now was the time to start teaching genetics and genomics 31% had already made curriculum changes 66% intended to make changes within 6 months Outcome Indicators Adjunct to the Essential Nursing Competencies and Curricula Guidelines for Genetics and Genomics Intended to define for each competency Specific areas of knowledge Clinical performance indicators Specific Areas of Knowledge Clinical Performance Indicators Components of family history needed to Collect a client s s personal and identify disease susceptibility or three generation family health genetic/genomic condition history to assess for genomic factors that impact the client s Standard pedigree nomenclature health. Type of information that needs to be collected and recorded such as: Disease and age of onset, ethnicity, both maternal and paternal lineages Three generations Existing family history tools 15

Education Repository http://moodle.med-ed.virginia.edu Unfolding case studies Filmed with standardized patient actors Interactive Self-directed Focused on common diseases Aimed to fill GERTIE gaps Funded by HRSA Division of Nursing IAA Publications Calzone, K.A., Cashion, A., Feetham, S., Jenkins, J., Prows, C.A.,., Williams, J.K., Wung, S.F. (2009). Nurses Transforming Health Care Using Genetics and Genomics. Nursing Outlook, In Press. Jenkins, J. (2008). Overview & Summary: First Genetics, Now Genomics: What Do Nurses Need to Know? Online Journal of Nursing, 13. Jenkins, J., Calzone, K.A. (2007). Establishing the essential nursing competencies for genetics and genomics. Journal of Nursing Scholarship,, 39, 10-16. 16. Jenkins, J., Calzone, K., Feetham, S., Tinkle, M., Thomson, E. Eds. Genetics and Genomics in Nursing Series. Journal of Nursing Scholarship. http://www.genome.gov/17515679 16

Barriers Faculty Champions Aims: Design and evaluate an ordered and structured intervention to accelerate nursing faculty attitudes, receptivity and integration of genetic/genomic content into nursing curricula Methods: Identification of Nursing Faculty Opinion Leaders (Faculty Champions) using sociometric analysis advice about curriculum issues consider trusted colleagues collaborate with on research or training activities opinion they most value Champion Training September 2009 with post training support and education 17

Genetics and Genomics in Nursing Practice Survey Results Knowledge Self rating of understanding genetics of common disease (N=126) 0% Excellent 2.4% Very Good 16.7% Good 55.6% Fair 25.4% Poor Nurses who had attended a class in genetics Heard of the Essential Competencies p=.003 Were favorable about the Essential Competency family history recommendations p=.001 Calzone, K et al. (2008). Evaluation of the Integration of Genetics and Genomics into Nursing Practice. Proceedings of Oncology Nursing Society 2008 Annual Congress. Next Steps US National Nursing Workforce Study Partnership with the American Nurses Association Validate these findings in National US sample Study announcement planned for Sept/October 2009 issue of American Nurse Follow with an education intervention for nurses focused on genetics/genomics in common disease Question 8 8. Nursing research is essential to assure translation of genetic/genomic information into improved health outcomes. Nursing research might focus on: a) Molecular genetics b) Implications for individuals c) Biobehavioral aspects d) Communication of complex information e) All the above f) None of the above 18

Molecular Individual Family Populations Biobehavioral Education Communication Healthcare Systems Nursing Research Direct To Consumer Testing From the Genetics and Public Policy Center at: http://www.dnapolicy.org/resources/dtccompanieslist.pdf 19

Downstream consequences? Ask your health care provider.. Questions?(selected) Analytic validity does the test reproducibly measure what it is represented to measure? + Clinical validity is what the test measures linked to a clinical problem? +? Clinical utility does it matter???? 20

Evaluation of Genomic Applications in Practice and Prevention (EGAPP) Initiated by the CDC Office of Public Health Genomics in 2004. Goal is to: establish and evaluate a systematic, evidence- based process for assessing genetic tests and other applications of genomic technology in transition from research to clinical and public health practice. http://www.cdc.gov/genomics/gtesting/egapp /about.htm http://www4.od.nih.gov/oba/sacghs/reports/sacghs_oversight_report.pdf Question 9 9. Schizophrenia genetic risk markers are now ready for utilization in clinical practice for risk assessment genetic testing. a) True b) False 21

Ask your health care provider.. Schizophrenia. Recent research into the genetic risk markers for this mental illness has yielded inconsistent results. Why Psychiatric Nurses? Genomics is relevant to all healthcare providers and consumers Across the life/health continuum Across all populations Education is essential-competency Issues Discrimination Quality of services/tests Access to interventions Resources 22

http://www.cdc.gov/genomics/default.htm Opportunities 23

Question 10 10 Genetic/Genomic(G Genomic(G/G) competency is essential for psychiatric nurses because: a) G/G is relevant to all providers of healthcare b) G/G is relevant to the healthcare of all consumers c) G/G is important across the life/health continuum d) G/G is important across the care of all populations e) All of the above f) None of the above MENTAL HEALTH DNA & YOU ARE THE ESSENTIAL BUILDING BLOCKS OF HEALTH CARE We Must Be Willing To Let Go Of The Life We Have Planned, So As To Have The Life That Is Waiting For Us.. Thank You/Questions jean.jenkins @nih. gov 301-496-46014601 24