Improving Genetics Education in Graduate and Continuing Health Professional Education: Workshop Summary (2015)

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1 Introduction and Themes of the Workshop1 Despite the growing use of genomic applications in clinical practice, health professional knowledge about genomic information and confi- dence in using it have not kept pace (McInerney et al., 2012). Genetic influences on health are ubiquitous and multifaceted, which can make it difficult to use this information in a typical health care visit. Many health care providers do not have either the knowledge or the tools they need in order to apply genetic information in their day-to-day practices. This lack of support is contributing to a substantial delay in the translation of ge- netic research findings, when appropriate, into improvement in patient outcomes within the health care system.2 In addition, although the need to improve genetics knowledge among health care providers is clear, the best approaches to educating health care providers in a way that produces meaningful changes in clinical practice are not, especially given the competing coursework and training needs that exist in today’s increasingly complex health care settings. Simply providing information is often not sufficient to spark interest among graduate health professional students, residents, and fellows or to 1 The planning committee’s role was limited to planning the workshop. The workshop summary has been prepared by the rapporteurs as a factual account of what occurred at the workshop. Statements, recommendations, and opinions expressed are those of indi- vidual presenters and participants and are not necessarily endorsed or verified by the Institute of Medicine. They should not be construed as reflecting any group consensus. 2 In this report, the terms “genetics” and “genomics” are treated as two overlapping domains of knowledge that raise similar issues and have similar objectives. Rather than referring repeatedly to “genetics and genomics education,” this report uses each term to connote the body of knowledge associated with both. 1 

2 IMPROVING GENETICS EDUCATION elicit behavioral change in providers (Davis et al., 1999; Forsetlund et al., 2009). But while didactic lectures and other traditional methodolo- gies generally do not produce the desired results in terms of clinical per- formance or health outcomes (Davis et al., 2011; Forsetlund et al., 2009), it is not clear which other methods will be most effective in increasing engagement and interest in genetics among health profession trainees or in achieving practice change among clinicians. To examine pragmatic approaches to improving genetics education in both graduate and continuing education of health professionals, the Roundtable on Translating Genomic-Based Research for Health of the Institute of Medicine (IOM) hosted a workshop on August 18, 2014, ti- tled Improving Genetics Education in Graduate and Continuing Health Professional Education.3 The workshop examined a variety of approach- es that could improve the teaching of genetics in the graduate and con- tinuing education of health professionals; these approaches included online and interactive instruction, just-in-time approaches, the develop- ment of clinical decision-support tools, and the incorporation of genetics requirements into licensing and accreditation. The objective of the workshop was to examine the potential and the challenges of providing genetics education, to review promising and in- novtive approaches to providing education to both graduate health pro- fessional students and practicing health professionals, and to identify potential next steps for achieving effective genetics education (see Box 1-1). The workshop did not address the need for evidence, which has been discussed in previous workshops by the Roundtable. Nor did it BOX 1-1 Workshop Objectives • To examine the context for the challenges involved in edu- cating health care providers in genetics. • To review promising approaches for providing genetics edu- cation in various settings. • To identify opportunities and next steps for improving genet- ics education for health professionals. 3 The workshop agenda, speaker biographical sketches, full statement of task, and list of registered attendees can be found in Appendixes A through D, respectively. For more information about the workshop, see http://www.iom.edu/Activities/Research/GenomicBased Research/2014-AUG-18.aspx (accessed September 23, 2014). 

INTRODUCTION AND THEMES OF THE WORKSHOP 3 examine undergraduates or medical, nursing, or pharmacy students, but rather it was focused on those who have already graduated and are in their internship, residency, advanced degree program, or fellowship or are already practicing. The workshop considered not just physicians but also nurse practitioners, physician assistants, pharmacists, advanced practiced nurses, and others who interact with patients and need genetics knowledge. Finally, the workshop did not focus on the content of the genetics education or on how well patients understand genetics issues. Rather, the central topics discussed by participants were the policies, procedures, players, and principles that play a role in the genetics knowledge of health professionals. Within that scope, a wide range of stakeholders, including health care providers, representatives of graduate and residency programs, professional society representatives, board ex- aminers, and education specialists, presented their perspectives and par- ticipated in discussions during the workshop. WHAT IS THE CASE FOR GENETICS EDUCATION? Each interested party has a different perspective on why medical ed- ucation is important, said Bruce Blumberg, the institutional director of graduate medical education in Northern California for Kaiser Permanente and co-chair of the workshop. “A clinician would have one answer. A laboratorian would have a different answer. A pharmacist or a nurse practitioner yet a different answer. A student perhaps a different answer.” Yet most would agree that some kind of education would improve care and yield better outcomes for patients. As an example of the difference that genetics education could make in the care that a patient receives, Blumberg presented a case study (see Box 1-2) and then asked the audi- ence to consider the question: Who do you wish would know more about what so that patient care or outcomes would be improved? BOX 1-2 A Case Study Presented by Workshop Co-Chair Bruce Blumberg A 52-year-old woman presents to her family medicine nurse practitioner with a new onset of hypertension. The nurse practi- tioner takes a detailed family history and finds that the patient had an uncle with a kidney tumor. 

4 IMPROVING GENETICS EDUCATION The patient sees a variety of specialists, one of whom orders a DNA test. Two mutations in succinate dehydrogenase subunit B are identified. One is a mutation that has been previously identified as being causative for paraganglioma. The other is a variant of un- known significance. A genetic counselor then orders a targeted DNA test on the 27- year-old daughter of the 52-year-old patient and finds that the mo- ther’s pathogenic mutation is absent, which reassures the daughter. One year later the daughter presents with a neck mass that is ul- timately identified as a malignant paraganglioma. A follow-up DNA analysis finds that the variant of unknown significance in the moth- er is also present in the daughter. The geneticist reviews the litera- ture and questions the original assignment of pathogenicity to the other mutation. Before starting chemotherapy, the daughter asks the geneticist to interpret her self-ordered methylation analysis to determine its implications for her therapy. The methylation analysis has nothing that resembles an interpretation. In each step of this case study, Blumberg said, improved genet- ics education could have led to a different course of action, wheth- er for the nurse, the internist, the specialists, the genetic counselor, the geneticist, or the patient. WHAT CHANGES ARE NEEDED, AND HOW CAN THEY BE MADE? What are the three things that would have the greatest impact in im- proving genetics education for health care professionals? Joan A. Scott, chief of the Genetic Services Branch in the Maternal and Child Health Bureau of the Health Resources and Services Administration and work- shop co-chair, asked all meeting participants to consider this question from their own particular perspectives as the workshop progressed. What are the provider education goals that need to be achieved, she asked, and how can this be done? Who needs to be targeted, and what specifically do we need them to do? Essentially, Scott said, it is necessary to identify the change that needs to be made and the way to make that change occur. The answer may differ from one part of the health care system to another, she said, but it is possible to identify several broad themes. First, there is wide- spread agreement within the health care community that genetics and 

INTRODUCTION AND THEMES OF THE WORKSHOP 5 genomics are indeed relevant to clinical practice. This agreement can be a powerful force for change once the needed changes have been identi- fied along with the steps that need to be taken to realize those changes. (Chapter 6 summarizes the suggestions made by workshop participants about needed changes and next steps.) Another broad theme that Scott identified was the importance of in- terprofessional education (IPE) as a way of increasing genetic literacy across the health care community. Different kinds of health care provid- ers will need to interact with each other in educational and practice set- tings to integrate genetics knowledge into mainstream clinical practice. Finally, Scott said, these interactions need to extend beyond health care providers to the many other groups that are involved in medical ed- ucation. For genetics knowledge to inform medical practice in a way that improves public health, groups that accredit educational programs, that design and evaluate new educational approaches, and that focus on quali- ty improvement within health care must all work together. “It isn’t until we are all together talking about this as a holistic issue that we are really going to be” making that particular change, she said. ORGANIZATION OF THE REPORT Chapter 2 provides an introduction to the major topics of the work- shop by looking at some of the myths and mistakes surrounding graduate medical education and continuing medical education and at how those misconceptions can lead to problems in the field. Chapter 3 examines several promising new approaches to medical education, along with sev- eral of the broad issues associated with that education. Chapter 4 examines graduate-level genetics education for health pro- fessionals, including in internships, residencies, and fellowships for phy- sicians and the equivalents of those stages for other health care providers. Chapter 5 looks at continuing professional education and at the compe- tencies that this education is designed to develop. Finally, Chapter 6 asks how to make the necessary changes in gradu- ate and continuing health professional education using the policies, pro- cedures, players, and principles discussed earlier in the workshop.