Event ID: 863541
Event Started: 11/20/2007 8:17:32 AM ET
Please stand by for real-time relay captioning.
everybody, good morning, everybody. Good morning. Welcome to day two. It's amazing that -- I don't know how, but all the new folk, even after the painful tough work of yesterday, they have returned. On time, it's amazing, and we are starting on time, of course, which is terrific as well.
Bring it on.
You got it. You gotta watch out for me, because I'm on the mend. I have more energy now. I am going to give you more crap than ever before. So, if you can see behind me, there are people who are gathering there because they thought they were going to have a few more minutes to prepare. But it turns out we are going to wind up being flexible. We have three of our super star members who are ending their term. They are gathered over there in the corner. Commiserating at all the pain, misery and suffering we put them through. They will get awarded, but to award people in government, you have have people of rank. Sometimes people of rank have other things that delay them, so until the rank gets here we're going to, in the interest of time, like march forward.
We have our guests here, so what we are going on do is say thank you -- good morning, my God. We are going to say to the guests, that you are flexible, and real flexible, and what will happen, Judy, the rest of you, we will start, then rank is going to come, then we will stop, we will honor our departing three, and then resume again, because we are all intelligent enough to -- at a time. No matter what happens, we have to finish the ceremony by 9:30. I can absolutely tell you there's a hard stop on ceremony at 9:30 because folks have other things they have to do.
With that we will turn this over to Barbara. I want you all to remember, we went through the chart yesterday of what was important on the strategic plan and where we were with it. One of them was education of health professionals. Your job today is to listen and query these experts around ultimately making a decision about whether or not we need to go forward with something in this area, or whether or not -- if we are, what might that be that you might want to do. Or you might decide the world is in good hands by others, and you can turn your attention and intelligence to other weighty matters on our agenda. You don't always have to decide to do something, just because we presented in front of you. With that you will thing through and deliberate. Barbara Burns McGrath.
Barbara Burns McGrath: Good morning. So for the next couple of hours we are going to talk about genetics, education and training of professionals. These are actually the funnest part of the committee deliberation. We get to sit back and learn from the people who are the top in their field, I thing morning is going to be very interesting. It's an area where we are visiting in roundtable format, as we did a few years ago. It's one of those topics that requires, calls for periodic review, or a second look. This is one of those.
I think it's really an important, or very appropriate agenda for this committee. If we think about the pipeline that extends from genetic discovery to utilization, I am sitting in the middle of the various health professionals we will talk about today. All that do research, craft policy, can pile up and get stuck right there if these people don't implement them appropriately. To use a words that's more familiar, these people are the deciders, the ones that move all of our discoveries forward.
As a social mandate we want these professionals to be knowledgeable about genetic principles, so they can, for instance, decide which genetic test is appropriate to order, be able to interpret the results correctly. We want them to understand complex ethical issues, difficult problems, whether or not to disclose results to A symptomatic children. We always want them to tend to larger societal issues, like thinking through the best way to assure equatable access to genetic services to under or uninsured people and address disparities.
A lot of what we did yesterday, offer guidance, but these folks have to learn about the suggestions we have for them; agree they have relevance in their own professional world and make decisions about how to implement them. Let me review how we got to today's session. The issues around education and training have been part of the strategic plan since its inception. I will talk about how it fits into the oversight report in just just a minute. There was a roundtable held resulting in the 2004 resolution. The entire resolution is in tab four. Briefly, there were nine resolutions, I will go over those a little bit.
The first one is to incorporate HHS policies into the -- an integral part of all healthcare, to facilitate by collaborating with state, federal and private organizations. This one also called for sharing of case stud ease and practice model says on [ indiscernible ]
Another was to promote initiative that's integrate genetics and genomic system in education and trining of professionals. Referred to family history information and point of care models. It also linked the health information technology issue to it. To encourage and support program that's promote diversity and cultural -- issues associated with disability rights.
Work with relevant organizations to incorporate knowledge of genetics and genomic and accreditation and certification processes. This one was suggesting using accreditation process as a driver for educational programs. Support federal programs for faculty program and clinical education based programs, particularly those concerning ESLI issues, in terms of educating the workforce. Consumer education support and K through 12. Intended to establish a pipeline for a future diverse workforce. These are rather broad, as you can see, in general. After that committee submitted the resolutions, moverred on to other priority areas related to its charter. You heard a lot about those yesterday.
Tween 2004 and now things have changed and it's time to take another look. We asked key people in the area to come give their perspectives today. We are doing that now, because as read the report, it's clear health professionals have a role to play here, particularly highlighted in chapter 6. We hope this session may contribute to that final report. Because of the link to the oversight report this session was convened over a very short period of time, some folks have a short turn around, weeks, not month, one week for some, to prepare. We appreciate the effort they all gave to be here today.
These are members of the steering committee, and many of them will be presenting today. I would especially like to thank Cathy -- of the staff, who participated in decisions, coordinated efforts. Cathy, it's been a pleasure working with you on this.
These are the disciplines represented. Some people wear more than one hat. You will see we do not have consumer representation here. Boundaries were placed around the limits, issues of professional development. We are not including review of federal efforts during this session, similarly. We are addressing education and training very broadly, including specialists and non-specialists, basic education, advanced specialization.
After reviewing the 2004 session and discussion with the steering committee, these are the topics identified to guide today's discussion. The first, asking everyone to talk about, address the issue of professional education and training from their perspective. The second is diverse workforce, what's happening, progress made, plans for improving. Emerging issues in the field, gene environment interactions are very complex, interested in efforts made to educate people about that, and emphasize the role in clinical care and public health. Emerging stakeholders to think about when thinking about education and training. Genetic family history is an area heavily marketed as an important tool in individual and population based care. Practitioners are being urged to integrate into practice, how is it going, activity, but not heard a lot of results. We are asking every one to consider the resolution and the oversight report.
So, the purpose of this session is to provide an opportunity to listen, have conversation with experts who are gathered here. It's a great opportunity to do that. The format is each person will have 15 minutes to present their views, followed by five minutes of questions to be directed at that particular speaker. We will be holding to that time. There was going to be a break at 10:30, there will be a break sometime. All six educations are finished we will furn to the -- for their comments. Then we will have a half hour for comment or discussion. The goal is to decide on next steps; we will decide as a group at the very end. For that we would like you to consider two questions while you listen to this.
Does the topic of education and training continue to be consistent with the SACGHS charter, and if show what is most important to discuss considering the charter?
We will start with our first speaker Joseph M cInernie.
McInerney: Good morning, thanks for the opportunity to address this group a second time. I am additionally gracious for the opportunity to -- health professionals. I am director for the National Coalition for Health Professional Education. We work on professional, genetic education for health professionals full time. That's what we are devoted to. I have been doing this now eight years. Today I would like to share with you some of my perspectives. I don't think I will cover all of those issues that were part of our assignment in 15 minutes, but I would like to giver you some sense of the challenges and opportunities that I have been encountering and -- and those many many people who work with us have been encountering over the last seven or eight years as we have worked to integrate genetics into education and practice.
I would like to review some knowledge, and then review one, just one of Mitch Page's many programs briefly to give you a sense of how we are trying to address what we see as some of the particular barrier and opportunities that arise for us as a genetics community.
Now, I am not sure you can read this from the back of the room. Can you?
I will read it, really too much text for one slide, but I will read it to you.
It imines with a rhetorical question. What practicing physicians should know -- that's even smaller. Cover your left eye. Says how much genetics knowledge should primary physicians have? We can extend beyond physicians. Should they be able to diagnose -- counsel about genetic diseases, advice, optimum hours between extremes, because the primary physician should have enough knowledge to recognize a problem as genetic, and enough genetic principles to use the literature wisely or consult with a geneticist intelligently. That's a reasonable statement. It's a nice summary of some of the questions and problems we face right now.
One of the difficulties for us is it was also a statement of problem in 1979 when the statement appeared in a book edited by Ian porter and earny Hook. Still struggling with the same type of issues. This slide is simply to illustrate some of the major challenges to genetics education that we have encountered over the last seven or eight years, as we tried to bring genetics information to the curricula for health professionals.
None of this is a startling new piece of information for any of you. Some of them are, I think, more problematic than others because they are in a very large sense systematic issues. It's important to understand that when you encounter any educational system you are encountering a complex ecosystem. As the great ecologist -- in a complex ecosystem it's impossible to do just one thing, because no matter what you do, it reverberates throughout the rest of the system. None of these things, especially those of you who teach in the School of Medicine, prepare other health professionals, none of this is new for you. I will tell you that one of the others that has come up over and over again is this issue, disconnect between basic science and clinical experiences during training. I will talk more about the way genetic ises content is distributed, particularly in medical education, undergraduate medical education, that is, before graduate training. One of the things we keep hearing here is that if students do encounter the basic science of genetics in the first one or two years of medical school, for example, when they get to their clinical rotations they very rarely encounter people teaching in those rotations who understand genetics sufficiently well enough to i lab rate and bring forward the genetics principles they learned in the first two years. That, I say again, is simply not the case with medical education. Preparation for professionals, there's a separation between the basic science and clinical practice, and reverberates into practice, as we will see.
I am not going to talk about all of these issues. I will say that there are some courses, you will see, where instructors or institutions claim they are integrating genetics across the curriculum, but, for example they say we don't have genetics course but it's in biochemistry. I recall the statement made some time ago, maybe to this group, often genetics is so well integrated as to be invisible. We have, will hear more about workplace issues from some of our colleagues, but we have a birth of genetics professionals. There's a lack of knowledge among primary care providers. The deterministic nature of genetics, can't do anything about it, don't hear that too often but -- genetics is associated primarily with rare, single-gene disorders, and chromosome disorders, two disciplines, pediatric and obstetrics. We have to work hard to counter that perception. You will hear about inadequate family histories, guidelines, in some sen sense a catch-all phrase to say we don't have enough knowledge in general to raise the importance of genetics for primary care providers and others who are providing services that we would like to see integrate genetics.
Now, the response we hear most often, and I hear this over and over again when I go out to talk to health professionals about genetics, what's happening at the cutting edge, this is what we hear, great stuff, but what can I do now?
Time is a significant issue. If we can't give providers something to do that is concrete, likely to improve patient outcome it's ditch cult difficult to think about integrating in practice. We say 5 years from now we can -- they say great, come see me in five years.
This is a quote from Charlie Epstein, presidential address at the American college of genetics. It's important to pay attention because we as a genetics community believe genetic information has value in and of itself. In the transpiration mission of that information it takes time, somebody has to pay along the way. Another issue that comes up gain and again. Genetics is not a discipline that does a lot of stuffdoesn't order a lot of tests, procedures, but still, the information has great value. How does it get reimbursed. A colleague from Harvard medical school published this I paper in the Harvard Business Review. Physician behavior is one of four particular barriers that stand in the way of realization of the promise of personalized medicine, yet to incorporate genetics and genomics intro their curricula. Let's see what we know about that, can demonstrate with data. In fact this, pape cere included in your packet. School of Medicine at Indiana , pretty good response rate, I will review some of this data. 77% reported they teach medical genetics in the first year, only 47% incorporated in the third or fourth year, and this harkens back to the previous comment about the separation of genetics from the basic science and clinical years. It will come up again. For example, right here. This seems to be a reasonable amount of hours of instruction devoted to genetics, depends on how one defines it. 86% say they cover primarily general concepts, only 11% say they address practical applications of genetics. Of course, to me this illustrates the problem, when students get to clinical years there aren't people to elaborate the genetic perspectives introduced in the first two years.
46% report a stand-alone course, 54% incorporate into another course, I told you my perspectives on that. These are additional data of the most commonly taught topics. This is an interesting paper, by the way, there are a lot more analysis Dr. Thurstone and her colleagues can do. Five minutes. There are some data in there about whether these courses are being taught by individuals board-certified in genetics or not. What I think the authors are about to do is take a look at some comparisons with respect to the course content to see if there are significant differences based on the certification of the individuals. You see the topics covered. I thought this was pretty interesting, 91.3% address -- concern about common complex disease. I should point out that the data about it is lack of understanding of genetic and lack of preparation of professionals in genetics, those data come not only from analysis within the healthcare community itself, other health professionals, also from the public at large. Admittedly this is a selected group, analysis conducted in conjunction with medical -- 6000 responses to the survey, consumer perception of genetics knowledge of their providers. The news was not very good. The consumers did not evaluate their providers very well with respect to their understanding of genetics.
Here are the central questions and challenges, a number of opportunities of course are embedded. Increasingly we struggle with these issues. Which content is appropriate and for who, difference between accurate and complete. Those who developed educational materials struggle with this all the time. We are not going to turn, don't hope to turn other, all other health professionals into into geneticists. How do we ensure it's accurate, clinically relevant. Which behavior and attitudes do we want to change and can we. Presumably education programs are to change knowledge and behavior. What are the things we want them to do, how do we measure them then?
I am skipping ahead to how do we define and measure success? Equally important is how do we get the materials to people, get them used so we don't end up with what I call state of the shelf materials. There's lots of good stuff out there, but sits unused. How do we do implementation, and measure success. Trying to change clinical behavior, how do we measure it, assert education will improve patient outcome, how do we measure? Costly and complicated tasks.
We recently produced a core -- first presented a long time ago, based on feedback from the community, we have peared those down considerably based on what is really important to teach in the practice. I have some handouts of that to pass around. Another program I want to tell you about, one attempt to provide access to genetic con10 the in a relevant way. We don't believe we are providing the answer, the only solution. After eight years of doing this I don't even know all the questions, much less the answers. This is one potential solution. We call it gene facts. It derived from our observation, this is more dichotomous than the reality displays, but there are open-source genetics databases that include these characteristics and subscription databases that include these characteristics. Often the subscription databases are highly clinically relevant, but it's often not very sound. The genetics data, on the other hand, generally very sound, but the providers can't access them, that's conceptually, in terms of their practice. Physically, but not practically. A middle ground, where the material is written by primary care provider and geneticists, working initially with content abstracted from gene reviews, con10 the that doesn't revide on gene reviews, and provide you information that is clinically relevant and genetically sound. I should point out Dr. Cory's group provided us with seed money to get this started and we have made a lot of progress. I won't share the template now, but I will be happy to send it to any of you who are interested. To let you know, we do have a list of criteria for selection of the first 50 entries we will put up on the system. I won't go over those with you, but we thought about that carefully.
This is something I shared with you the last time I spoke three or four years ago. I think it's more germane now. I think we make a mistake by talking to our non-genetic colleagues by talking about genetic disease all the time. That simply rolls genetics off in ways we don't want it rolled off. I am saying, I know it's almost heretical to say to this group, but I would like us to stop talking about genetic disease as if there was genetic disease and non-genetic disease. I don't know the easier locution yet, but something such as the follow: It's not whether the disease is genetic or non-genetic, it's the role it plays in the expression of the disease now in the person. Sometimes salient, sometimes not, I would like us to think differently. If we want our colleagues in the other health professions to think differently we have to provide guidance for doing so, not continue to convey the notion that there's this, what I consider to be a [ indiscernible ] in genetic and non-genetic disease. I will stop there.
APPLAUSE.
Thank you. I think your perspective of being on the round table is really valuable. Thank you. We have a minute or two for questions.
Question: Thank you very much for this wonderful work. I would like to pick up the theme of stop using the word genetic disorders, genetic disease; ask you to guide us a little bit any the activities over the last few years in had this context particularly, because I heard you in a couple of times say genetic information has intrinsic value for us as geneticists. We have to provide guidance. People sitting on the other side, in the context outside genetic diseases, for which genetic information has intrinsic value, they don't know whether it has intrinsic value, say for pharmacogenomics, X, Y, and Z, they don't know if there's value or not. The question I want to ask, has Mitch Peg picked up the content of evidence-based medicine, working with primary care providers, evidence-based communitys to see which type of genetic information, outside genetic d iseases, which we all know we need to diagnose, treat, et cetera; which need to be moved to mainstream. The average practitioners are asking all of us, what should I do now? In the absence of evidence-based guidelines to guide them they may not think genetic information has intrinsic value. Help us go through this.
That's an interesting question, haven't probably addressed the evidence-based medicine as closely as we should have in most of our or should of our programs. We work with you our colleagues in the provider community to try to identify the cases, the instances that are most important and germane to them. They help us frame the discussion about what kinds of evidence will resonate with their providers. In a more concrete sense, we have, in conjunction with genetic alliance been working on a project are called Assess to Credible Genetics Information, I don't know the acronym actually, but the issue here was for us to try to apply the principles of evidence-based medicine to this selection of genetics information that providers and patients can use to make informed decisions to healthcare. We found there's not an easy one to one correlation. We developed a toolkit to help individuals, providers and -- alike, to judge the completeness, accuracy of the information available, in educational setting and from the literature. I don't know if that helps answer the question or not.
Thank you.
Reed V. Tuckson: We are going to pause a moment. Thank you for your indulgence. We are extremely pleased that three of our members who have rotated off the committee took the time and energy to change their schedules to be with us today. One of them has to go off to a meeting that we promised to get or hut for scrks her out for. We are extremely excited to honor three of our most outstanding members in the history of this committee. You talk about some hard-working folk -- who -- it's really painful for me, I came in with them. Golly, I feel sad they are not going to be around. Anyway, let me start with Cindy Barry. Cindy is an attorney at Powell, goldstein, where she's chair of the government relations practice, member of the fimpl's healthcare practice. Previously general counsel at web site ler and walker, public policy associates. Prior to that, Washington counsel to the A MA, practiced law with -- sterd vaunt and dewit in Nashville, Tennessee. Served as assistant to John Kyle, practice withed with a bunch of people before moving to Washington. See, Cindy -- every firm she's been with has 18 people, I will just mess it up if it I try.
Anyway, her issues are specializing in healthcare law, medical malpractice and commercial litigation. She served as vice chair of the injury compensation program, member of the secretary's committee on -- degree from Vanderbilt, practices before the U.S. Supreme Court. Cindy, can you join me, please?
The remarks from the secretary on your certificate are that you pointed to SACGHS for law and public policy. As a member of our predecessor committee, the advisory committee on genetic testing you provided continuity between the groups. During your tenure with us you spearheaded the -- report, and made significant contributions to the committees work on discrimination, gene patents and licensing and oversight. We thanking you for your service and are pleased this certificate of appreciation is offered on behalf of secretary Lovett, work on issues raised on the use of genetic technologies. Cindy, hard working, reliable, trustworthy counsel. Thank you very much.
APPLAUSE.
Thank you so much, Cindy.
By the way, you only gave me two. But I am really happy now to ask Kira to start to come forward, Tear a When, representative of the San Francisco advocacy core, a group that shares patient perspective with breast cancer researchers in California. A survivor of lymphoma and breast cancer -- her father and mother died from cancer --
Not mother.
I am always the one who pays for this. So, brother. She's a member of the planning committee, national survivor's day in the San Francisco Bay Area, does extraordinary work with cancer patients and their families, served as a reviewer for research grant applications, providing the most important patient perspective. Professionally, Ms. When is a staff research associate add UC SF comprehensive cancer center. The remarks on her certificate. Appointed to SACGHS in 2005 for her expertise in consumer advocacy, and to bring consumer perspectives to the committee's deliberations. During her tenure she provided important insights, contributed significantly to several efforts, include being the large population studies initiative and gene patents and licensing. On behalf of secretary Lovett, rec niegz of your public service, commitment to issues raised by the use of genetic technologies, I am pleased to present this certificate of appreciation. I will say again it's always been a joy to have you around the table, knowing that when the patient consumer perspective needed to be there, your voice conscience was always there, your smile brightened the table. Thank you for your role model.
Thank you.
Finally, for our friend Hunt, we very rarely call Huntington. [ indiscernible ] and they give me nothing of the official wording -- I want to read what the secretary was going to have. Because I want -- I am going to say what I am being to say, but I have to read what the certificate says.
Just cry, Reid.
I have to stay on script for Huntington. Or I will get in trouble. Dr. Hunt Willard. You were appointed in 2003 for your work in human genomics and -- you provided important leadership as chair of our charge population studies task force, guided development of the committee's comprehensive report on policy issues associated with these type of studies. You served on the pharmacogenomic task force, message other issues addressed by our committee. Dr. Willardard, on behalf of secretary Lovett, we are pleased to given give you this certificate for your public service in commitment to addressing issues raised by the use of genetic technology. Hunt has been often right on to me, trying very hard to keep me in line, keep making sure that we were informed by the absolute best scientific thinking on these issues, and you have been rock solid, rockstar, thank you Huntington, so much.
I hope that the new members of the committee do recognize, I think you got a sense of it yesterday, we have five, to let the three of our leaving people know the five new people coming in got a real treat yesterday of how hard -- it was a treat, yes, how hard this committee is, how hard we work. I hope you can sense the bonds formed by doing this work are pretty intense. It's great that we stopped the whole train for a minute, really say thank you to the three of you. You are welcome to stay, be part of the deliberations as long as you want. I hope you recognize no good deed goes unpunished, and there will be the very long arm of the committee reaching out to grab you for some task or another. E.g., you cannot get away from us. To our guests, thank you for your indulgence, enough to change the schedule, I appreciate your flexibility.
Getting back to it, the next speaker is Norman Kahn, American Academy of Family Physicians.
Norman Kahn: I appreciate very much being here. I am going to try to represent the position of medical education in this. The reason I am sitting here is I have two video clips, and it requires -- they don't transfer on a thumb drive. We will do our best with the clips. There have been a lot of revolutions in healthcare, antibiotics, arks septic technique, surgical an ease these ya, you have recognized, immunization, sewage disposal, water purity, and will genomics be in the same revolution? Francis Collins great quote, virtually all diseases have a genetic component. We all recognize that concept hasn't been well-int integrated into medical education yet.
Two projects I will discuss and a third one hint at. And show the video clips, I will do a needs cemented need assessment. Genetics and primary care, the project started in 1998, the genome was sequenced in -- the we appreciate the agencies on the screen for their foresight to recognize is would be necessary to begin to educate medical faculty about genetics so they could incorporate genetics into medical education.
The goal, again, was to get it into undergraduate and graduate primary care education. The next two slides are probably the most important of this presentation. The most important cop Septemberings we learned from the project was the concept of primary care through a genetics lens, and genetics through a primary care lens. We brought the primary care community, family medicine, pediatrics, internal medicine, ob-GYN genetics alliance, there were two different cultures, perspectives, and each was ignorant of the others perspective. Recognizing the two perspectives was absolutely critical, otherwise we would not be able to communicate with one another. The concept of primary care through genetics lens, as a clinician, I need to expand to, to include genetics. I need an appropriate history, may not be able to do a three-generation pedigree, but need to do an appropriate family history. Non-directive counseling, not the hallmark of primary care counseling. Legal and ethical issues raised by genetic diagnoses. The genetics community realized they needed to see through the primary care lens. They needed to evaluate the utility of genetic information in terms of health outcomes, the genetic's communities basic feeling is all information is valuable. Needs to be evaluated, the utility needs to be evaluated in terms of health outcomes. They need a respect for patient preference. The patient is not ready for all information, doesn't prefer to make all decisions themselves, protect patients from media hype and use the pro-- long tide weekly basis, monthly, ready for new information, the concepts became important as we played out the concepts.
You have a handout, I won't go through the teams. We put them up in case you know people, you can talk with them about their experiences. This was the GPC curriculum, seven topics having a genetic component. What's interesting, we wouldn't, with the possible exception of hemachrome a to sis, we wouldn't consider these genetic disorders. Breast cancer, coul owe rectal cancer, but distinguishing the different types, seeing which are genetic, which are not. The concept of patient acceptance is enhanced by not referring to these as genetic disorders.
There were several complementary tool, a curriculum, I will give you the website for it. We talked about evidence-based medicine even back there between 98 98 and 2003. Here are the websites, you have these handouts.
After 2003, then, having focused on undergraduate and graduate education, we worked on -- spent the whole year of 2005 focusing on genomic and educating primary care clinicians at the practice level. These are the supporters, the folks who paid for this particular endeavor. Additional supporters, interesting here is that there aren't many pharmaceutical companies in the support here. Pharmaceutical companies love to support continuing education for physicians, but they weren't ready to support education in genetics. Very interesting.
These are the coop rate are partners, nurse practitioners, internists, geneticists, March of Dimes. Here are the topics, a lot of overlap in the topics. Family history was added, bipolar disorder. I will start with a video clip, if ky get the sound to work, we tested the video. There were eight programs with those eight particular topics.
I say past tense, because continuing education has a life span, accreditation span of two years. Unfortunately only two remain on the web. You can get to them, if you get there before the end of November, when they expire. They are at the homepage of the American Academy of Family Physicianses. You will find annual clinical focus, can get these.
I was airings frayed -- afraid of that. Bear with me.
Video on either your mother or father's side. If your father's sister has a gene mutation your father has a 50% chance of -- if he -- there's a 50% chance you inherited from him. If he doesn't have it you have no riff being of having the inherited --
Wait a minute. Does that mean he could get breast cancer too?
It's possible.
McInerney: I will pause that, we are trying to model, in particular this is a family physician, we have nurse practitioner, physician assistant, pediatrician on one, trying to model the interaction with the patient so the practitioner gets a sense of what they can do now, today in practice, not waiting for some new break through. We hoped that the web-based delivery would work. This is the -- data. We talked to partners, we had no way of knowing how many people would participate in this. We were hoping, if we got 5000 visitors, users, we would be thrilled. As of today we are over 30,000 unique visitors to this program. We have far exceeded expectations. My response is this is a very good vehicle for educating clinicians in if practice.
To let you know, the residency training programs are also core curriculum for incorporated genomics into genetic information, a reprint I can get for you if you need it.
Here's my needs assessment for you, as I conclude. Even though we did a five-year faculty development project, spent a year with the primary care community educating clinicians, it isn't over. We see primary care clinicians need to see through a genetics lens. Need to incorporate family history as standard of practice in each patient's health record.
Primary care clinicians needs to be sensitive to the ethicality, legal and social issues when they approach genetic testing. Remember, there are 2000 certified sennet geneticists and 2000 genetic counselors in the United States. The only clinicians in those communities are family physicians, osteopathic, nurse practitioners and physician assistants. They need to know the implications for genetics based testing, and the full disclosure, inheritable diseases and newborn children, implications of newborn screening, and particularly the evidence-based implications. Need to be comfortable in interpreting, following up on genetic tests with patient and families. It's not going to be sufficient to say oh look, your screening test revealed something, I will get you an appointment with a genetic counselor. That will be fine in a large care centers but -- using multidisciplinary team and resources, prime carry care physicians need decision support integrated into electronic health records.
You might be interested to know the immigration of electronic records has taken off more quickly than expected. The percentage is close to 40%, with another 12% in the process of purchasing electronic health records. The need for embedded decision support is right now.
I don't know how many of you have heard Dr. Collins -- he said share, my life is an open book anyway --
The Dr. Henry he refers to is the CEO of American Academy of American Academy of Family Physicians, this is at the meeting of the society.
Let IT be known, that Dr. Henry had a chance to veto this idea. He didn't, so -- if this O fendses you, talk to him.
Music -- this is a tune, I saw you grooving there within the mood, I don't have to worry about this group being familiar with a tune more than a year old. This is a rock and roll tune rewritten for the occasion, a theme I -- patients looking at the PC, his or or -- secret -- coming to you to ask, that's what this song is about, about "20/20", and I am the patient, and I need your help.
I need your help in another way, when I get to the high C sharp, you will do that part, help me out.
[ indiscernible ] in all 3 billion places, upon my PC screen ... am I built for long endurance or loss of health insurance, am I a mere machine, I'm A walking through the genes, you know what all this means, what diseases can there be behind that C M T, and I wonder, W A, W A, W A, why, what does it say, amazing DNA, dd dd DNA.
What's my DNA prognosis for osteoporosis, what drug will work for me? Yikes, to use this information, I'll need education, I'll need my family MD, I'm A walking through the genes, to know what all this means, what diseases can there be behind that GM T, and I wonder, sing with me now, W A, W A, W A wonder, why, why why why, you have to -- what does that say? My amazing DNA, dd dd, DNA, D, D, D, D, DNA.
Interesting interlude. That was the end of --
Can I give context for this?
My major job is director of the international genome research, to keep people from doing this. I am not doing my job, but I have help in high places. Francis was awarded the international medal of freedom, called by the White House, told he would be -- bestowed the medal, where to show up, how to get there, at the very end the staffer said, oh yes, specifically asked to tell you -- no music.
As speakers want to do, Dr. Dr. Collins asked people to come down, has a nice guitar, two people straight for the guitar, not the doctor, they recognized the value of that guitar.
Thank you very much, no one would have any questions after that. You have one? Go ahead.
Maybe we can get to it later. Curious you didn't mention the boards. Wondering whether or not there's an effort to coordinate the stuff you guys are doing with the Board itself.
Not much. And I would add that to the needs assessment, Dr. Tuckson Dr. I think the recognition of the role of then genomic medicine in the certifying boards is in need of enhancement.
We will come back to that in the discussion. Thanks.
Just to add to that, there has been a recent assessment presented at meeting led by Darryl Wagner, universe its of Chicago, national boards of medical examiners, parts one two and three, decreasing content over the course of those three examinations, but there is formal work that will be published on that in the very near future.
Thanks, I appreciate your perspective, and especially like your double vision of the lenses.
I wanted to say laughter and humor is one of the best ways to get to the general population. I suggest this clip be place ed on YouTube.
Beth Pestka, hard to follow that.
Elizabeth Pestka: This is really a wonderful opportunity for me. I am brand-new to this type of experience, and so it was very exciting. My family thought I was really getting important in the world to come to Washington D.C., speak to a group such as this. My in a name is Elizabeth Pestka. I go by Beth. The reason I was invited to speak to you on behalf of nursing. 2-point nine million nurses in the nation, and it's the largest grown of healthcare providers, we suggested having genomics as -- are your nurses educated? No, I don't promise that. Are your nurses comtent in genetics, Jen om ijs, I won't promise that. But we are making good head way. I will share an overview of nursing, and more specifically what we are doing in relationship to our program.
Prior to 2004 there were many excellent initiatives in nursing, the profession of nursing. The articles in the packet, you can reference those. They weren't real condensed or planned activities. There were scattered things making good inroads. What happened in 2005 is two individuals from the international society of nurses and genetics, who work for the government here in Washington headed up a group. Their goal was to get more of a concentrated and more cohesive plan for how we could integrate genetics and genomics into nursing. We started work in 2004 contacting nursing organizations. With such a large body of nurses, there's about 80 nursing organizations in this country. They actually were able to garner support from 48 of those organizations, so that's pretty amazing, a very high percentage, especially when you think nursing is mostly women, and women don't always tend to agree, see eye to eye on everything. That's an amazing accomplishment. In 2005 then there was a meeting to endorse the essential nursing competencies. The two individuals who does deserve an enormous amount of credit, Jean Jenkins and Cathy -- bringing consensus to the whole program. In 2005 they gathered individuals from these organizations who were interested in endorsing genetics and genomics competencies, and did come to consensus. Those competencies are listed in your packets.
What happened then is the support of these organizations and in 2006, last fall, there was another meeting to identify an integration plan. This is for implementing these competencies into education as well as into practice. Again, an extremely excellent oversight, overview of how we're going to be doing this. In the implementation plan there's three focus areas. First of all, the nursing academic focus. If we don't prepare nurses of the future we won't have anything to work with. Secondly, practicing nurses, and thirdly, regulatory and quality control focus. Any number of items identified under each of these categories. Dr. Ann Cash in is going to speak more to nursing academic focus a little while later. I will primarily talk about practicing nurses, because I am a nurse in practice and I work with many thousands of nurses in practice at Mayo Clinic.
What is the plan or the theory that this whole implementation plan is based on? It's Everett Rogers. I spoke Jean Jenkins, she said normally this process takes 17 years. She's far enough long in her career, doesn't want it to take place in 17 years, the goal is five years for this plan. In the diffusion of innovation theory, there's the knowledge stage, need to educate nurses on what is genomics. At Mayo we have nurses go to other conferences, come back, say can you believe it, nurses at these other places don't know what genomics is, think, a few years you didn't. We use the term genomics quite liberally, want it to be inclusive.
Then there's the persuasion stage, why is it important, relevant for me? We learned it has to be very specific, what's convincing to a nurse in orthopedics isn't to a nurse in hemology or psychiatry. It has to be information and examples for each subcategory. Then the decision-making stage, is genomics worth the effort? Is it really something I want to put my effort into? People are busy, already mentioned, time is of the essence, so many competing priorities, is this worth the effort.
Implementation stage, how do I include genomics in my practice, and what does it look like? This is alluded to, and I would like to speak to that a little more. Finally the confirmation stage, am I competent in utilizing genomics in my practice, what does that look like?
At Mayo Clinic, in 2001 our leadership said genomics is the future of healthcare, no doubt about it. Absolutely no doubt. Our president and CEO, Dr. Dennis cor Ty said -- genomics is -- this has been a prevailing them. We certainly have been moving in this direction to the point that we are establishing a center for individualized medicine based on genomics information. We aren't there yet, but we are moving in that direction.
One of the things that was really pivotal for our program at Mayo Clinic was receiving the magnet prize, described as the Nobel Prize of nursing. People who hadn't considered it before, thinking this got the prize, must be important stuff. Actually, even on an international basis, recently I was invited to Singapore, they really are seeking magnet status, said this is Mayo Clinic, they got the prize, we better consider doing this. They were motivated, if we invite you back next year for two weeks could you get all our nurses competent in genetics and genomics? I don't think I could do that, but I would come back. Very important, generated a lot of interest, focus on genetics and genomics. It was recognized for a very grassroots effort.
I would like to share with you also, say okay, our organization says genomics is important, the profession says genomics is important, and mostly important, our patients say genomics is important. I have a brief video clip, one of our patients, an unscripted, unprompted recording. He did consent to this. I want to point out how really important -- patients come with high hopes for genetics and genomics. We need to realize those hopes. This ties in especially well for this group, he's speaking to pharmacogenomics, which we are actively using.
I tracked our genetic history as far as depression and bipolar all the way back to my grandsfather. We have established that link, because my mom is bipolar and her brother was bipolar, and now I am recently diagnosed bipolar. Hopeful my daughter is having various psychiatric issues. The thing I carry in my mind is will she suddenly get worse or have psychiatric problems. Praying that my son will have nothing. Right now he is completely healthy person, and so far he seems to be without affect in this bloodline of bipolar depression. I just heard about this method they have to relatively quickly find out if you will respond to certain medications and target your treatment. The first phase they can do to make somebody feel better is give them the hope that they are not going to have to try six or seven different medications before they start feeling better. Of course in the future, like some of the other genetic studies, they can target specific gene therapies, and of course they would inject those therapies, correct the problem, permanently. You are done. You are not going to come back. I know it's a bit of a long road. I know they have had difficulties with other experimental tries. I know people have actually even died from them, from some of these, but I think if they continue to be careful, progress in a regular manner that they will begin, arrive at a point where they can specifically treat each person on a genetic level and because of that, get an injection every two, maybe three injections, they are done. Their problem is whipped.
That's a pretty powerful story. James has high hopes for genetics and genomics. He came specifically for the pharmacogenomic testing. He's anyone owe been on so many medications. He's hoping for something to help him out as well as his family members. These really sell the education, these video clips, these are real patients, real issues, and they are looking to us for answers, for care. So it's a really powerful series.
Okay, a little overview of what we have done to enable us to receive the magging net prize. We have a diverse program, started in 2001 when the rest of Mayo Clinic said okay, we have to educate everybody. It's been incremental, step-wise, but we are moving forward. We did presentations to the leadership groups , articles, started a development curriculum, four-hour class available to nurses. Had posters at every single nurses fair starting in 2002, keep it there, visible. Special education technologies, we have a wonderful intranet specific to nursing at Mayo Clinic, being utilized more and more. I know the use is increasing. In our nursing conferences we include genetic and genomics in almost every one. We sponsor a dozen conferences a year, becoming more prevalent. Our nursing spp specialty curricula, going into hemology, psychiatry, other specialties, there's other genetics and genomics int graded.
The centerpiece is our nursing genomics -- anybody with an interest can join this group, started with 30 people, now up to 100 individuals, and they are doing marvelous things. Three things, started with two, added a third: Learn yourself, teach your peers, and in the last year we added, you have to start role-modeling the competencies. Of we keep it simple, real, and they don't have to be up and doing big presentations. They can do a bulletin board on the unit, binder of articles, they can do anything, but they have to do something is the expectation, the accountability piece.
We took those nursing competencies and because it's in practice, a list of competencies that was still too vague, too general for nurses. We said we will help you out. Show you what it looks like in the nursing process. We took those competencies, put them into the nursing process, part of assessment should be family history, pedigree, environmental factors physical findings -- nurses are great patient advocates, discuss the cultural issues, support services, and the genetics referral as indicated, evaluate services providedput in a format nurses were used to looking at, get their arms around. We said we will make it even easier. You don't have to do all of these right away. Do two assessment items, two intervention items right away, we are happy. Good start. We are working on that with our nurses.
This model is accepted for publication in the American journal of nursing, should be coming out soon.
What are some of the barriers, recommendations? Again, these have been cited already, be Center for Implementing Technology in cited by others. Integrated Integrate into the existing programs. Time to implement in practice, huge challenge. Everybody is busy, there's more expected with less. Keep it simple, relevant and realistic. Don't expect everybody to do anything. Time to evaluate competency, again, simple reel van relevant and realistic.
We get requested to present at other organizations, our series of recordings, can we have those, the unfortunate part is they were done with private funds, so -- oh I want to share them bud I have not been at liberty to do that. Occasionally I do, not supposed to. I want to be able to share what we developed. Now we are developing a series of nurses demonstrating exactly how they are using the competencies. It's incredibly valuable. I want to be able to share those, invited to speak at national staff development conference in the summer, oh, I would love to be able to share all those things we are developing, but I don't have permission to do that. What we really need is federal funds or non-private funds to develop more relevant resources for all specialty practices. Again, the series of segments that are very relevant to different specialties. And we definitely need a centralized location for resources for all nurses. To keep that up to date, and to identify the gaps, develop things that need to fit into those gaps. Again, it needs to be very specific. General information just doesn't cut it. It has to be specific to nurses, to specialties, for nurses to really buy it, embrace and engage in it. We really believe genomics is really the future, not only our organizations, but all the professions in healthcare. It's been an exciting opportunity to be working with genetics and genomics. I have had other assignments concurrently, but genetics and genomics is my passion, where I see the future going. Really, really enjoy moving that initiative forward.
Any questions?
Yes, sir.
Question: I have a question, I think what you are doing is very interesting and valuable, I commend you for work nothing such a direct way with patients. I was a little concerned about the -- bipolar patient. I am a psychiatrist myself, I think there's a huge mismatch between the patient expectations and what can be delivered in this lifetime. I think the problem with psychiatric, specifically, schizophrenia, bipolar, if its migrated in a way, no genetic -- in the future, migrate back to the way they should have been. Their brain be rewired, based on genetics. This man has a very unrealistic expectations. Is it part of your education, that you address those. Some people don't understand genetics, say here's your gene, you have a contribution. But other people, way over, almost like a delusion he's having that he will have three injections and be fine. How do you address that kind of unrealistic expectation side of the equation?
Thank you. I totally agree, his expectations are unrealistic. We do, that is part of the education, to frame it in realistic terms. Even the pharmacogenomics doesn't give all the answers, people think this will tell what meeds medication, what dose. Your point is well-taken, we inform, it's hope for him, something, he's excited, but he's unrealistic, the education needs to occur.
Yes?
Question: This is very impressive program. Have you put together a measurement tool to look at the progress and to monitor how much of the information is being internalized by nurses who have been on the job, new nurses coming in?
We did one study, psychiatric nursing, my specialty is psychiatry, we did a pre-conference survey, end of conference and three-month, and the nurses had significant learning, did retain and did apply. That was the only study we have done per say. We are to focusing on the --
Measuring that?
We did one pilot stud the last year related to hemology and oncology nursing, whether they were applying the competencies. Results were interesting but not profound. Part of it was our methods. We are working to replicate the study in other settings, say if we provide adequate information can we measure the nurses are doing this. The measurement would be self-report, report a patient situation where they used the competencies and made a difference.
Thank you.
Question: Thank you for the presentation. It's very interesting. Actually the last question is always the one that's critically important, just because your models -- innovations, you know one of the elements of diffusion of innovation, short-term and long-term. The question that has to do with, not only the time of early or late adopter of information, but my question, two questions. On that note, how are you looking at some of the immediate education as it relates to the professional relationships you have with other professions in terms of disseminating information, using information. Other professions being not only physicians, nurse practitioners, physician assistants, but people like social workers, psychologist, lay health professionals, and particularly talking about genetics in the community level, the persons who do things like single gene counseling. That sort of thing. Secondly, I am concerned about the same question that came up earlier, with the physicians, how do you deal with the differential amount of information provided in a different setting; even at the different level of nursing. The different levels, two-year, four-year, that sort of deal. I would ask the same question of the two provider presentations earlier, a forum on that later. I will save that question. If you can think about it, I will come back to it.
Thank you. We are looking for in our setting champions, the national nursing program is looking for champions in practice, academic, and really focusing, spotlighting those champions, in our own local setting. We have one multidisciplinary group. Numerous ones, but one where we did a vo segment of different disciplines, exactly what their role is. They did a model, six or eight individuals caring for high-risk prenatal individual families. They defined, okay, what is the nurse doing, genetics counselor doing, physician doing, what is the social worker doing? It was looking at it from a multidisciplinary perspective, because definitely we do work in teams and want to make sure we are complementing instead of competing or overlapping. Excellent question, thank you for asking.
Thank you for sharing that interesting initiative at Mayo, thank you.
APPLAUSE.
Next speaker is Melissa Fries, American Academy of -- genetics.
Melissa Fries: Good morning. I am Melissa Fries, will speak to you from two roles. One as a practicing medical geneticist, and two, from my role as chair of education committee of the American College of genetics. Relative to the education of medical genetics, what practice is like for someone in genetics and the role of our professional society to assist us in this.
The education right now for medical geneticists is a residency, formerly a fellowship prior to 92, at the moment a residency for which there are 48 programs in medical genetics. It's a two-year program, some institutions have three-years, and rerequisite of two prior years of some initial residency training, such as pediatrics, O B GYN. There are five year residencies and several fellowship programs such as that for maternal fetal genetic and -- and pathology program, a one-year program.
All of these residencies are ones that can be entered into after you leave medical school. The medical genetics residencies, 196 positions, I went through the whole listing, of which 47% are filled. That's a staggeringly low fill rate for anyone working in -- you recognize most places, like family practice, 93% of those positions are filled. We are looking at some of our programs where there are four positions of which there's one fellow or resident, some programs, unfortunately there are -- maybe this year we won't have applicants. The programs are there, positions in place, not being picked up by medical students. This is a subject of considerable amount of research. The -- summit in it 2004, included representatives of many of these major genetic professional organizations, both in the U.S. and Canada. Canada is a key player in much of this, actually has many of their own medical genetics residencies. One thing you can see in addition to the fact the programs have not filled, it means there's a declining number of people that are going to be available to meet the oncoming role. Many people in genetics look like me, this is not artificial hair. We need new people to come into our program in order to actually take our places, the whole job in medicine is to train your replacement. That's not going to happen if we don't increase this.
The boundary summit worked hard to reach consensus in increasing recruitment. Ideal for students seeking a career, genetics has to go hanked in hand in hand with ongoing research. The goal is to seek NIH funding for centers of excellence and enhance the visibility of medical genetics by working directly with medical student advisory groups. There was recognition of the need to strengthen core training issues, swells partner with other medical specialties, and work with joint specialty fellowships. That's where the MSN genetics fellowship came from. These have not been idly dismissed, the process recognizes -- needs the recognition, we have to redefine some of our training. We actually planned -- 3. One of the things you want to bring up with the recognition for this is that medical geneticists have a unique role in caring for common with a genetic condition. They may be the ideal person to be the "medical home" for that person. As you move from your diagnosis as an infant into your role as a teenage, adult, you may find the medical geneticist is one of the key people to actually be able to do that. That requires a change in the training. If you are trained largely to think of things ped pediatrically you will not follow into their role as adult.
Speaking in my own practice, I come from a circumstance where I spent 26 years in the air force where I was an O B GYN and practicing geneticist, mostly prenatal diagnosis and consultation. I moved to a practice in inner city D.C., very busy hospital, the only geneticists. I am called director of genetics and fetal medicine, I am in charge of myself. Very helpful. Gives you a sense, even for the places that have medical geneticists, they are rare birds. What I find is, my practice is guided by these three Rs, and the first one is recognition by other professionals. You would think there are so few of us that maybe the hospital, by just the mere fact of hiring me would make some effort to market me. Hasn't happened yet. Marketing and advertising what this person does is, I think, a key function, and one of the things that could be done very well, working on an initiative for this in my own institution is this intranet curb-side consultation, if you have that in the system, as Beth was commenting, you can click on that, then one of the hours I am not doing other stuff I will try to get back to you, tell you -- we could work on.
The lack of recognition leads to the second R, the referral process. Many providers, even in fields where you know there are genetic issues don't feel a need to refer. They often feel they can handle those genetic services just as well, and it's probably not going to be a beneficial thing for the patient. So the referrals are struggles.
The final, have heard a lot about reimbursement, but I have to tell you, the issue of reimbursement in my own institution has created a two-tiered system of genetics. Most of the patients are Medicaid. Medicaid patients cannot get a genetic test paid for that is out of state. So if I want to get one of my Medicaid patients crested for -- one or two, has to pay for it herself or go through myriad need program or hopefully through a grant. What happens, you get experience quandary, so you are tiered for that, patients may not even be referred because of the issue of reimbursement is such a problematic one.
One of the other issues you find in practicing in the diversity of medical settings is there is this ongoing pattern for use of family history. Family history would want to incorporate into all medical fields. But even for experienced genetic providers who do medical family history taking, genetic family history taking every day, across demographics this is very difficult. The socio economic and cultural issues are enormous. Problems with literacy, language, we are not just talking about Spanish. I spend a third of my time speaking sfannish to my patients, I have gotten a lot better, but at the same time my patients may not read Spanish. So how are they going to deal with that? How do we deal with literacy issues? They may lack information on parentage. Mother, father, you knowy this. Not always the case.
The medical issues in the family may not be discussed because they may be tabu, or certainly unknown. One of our key areas in this is to focus on development of tools, education across the demographics of language, culture and literacy. Has to be a key point for integrating truly into practice.
I took this from Dr.'s article in 2005 about medical genetics, shows the pedigree of the institutions here to help us. You can see the parent organization, American society of human genetics, has been around over 50 years, given birth to quite a very few children, but they were born quite late in life. Seem to be still fairly robust. In 91 the American college of medical genetics, 1980 the 1980 American board of medical genetics, married late. You can see the medical specialties board, and sole child here, the RCC for genetics in the American college, A C GM E. Our group of professional medical organizations that are associated with the practice of genetics.
We have all different roles. I would say that one of the key overwhelming roles of all of them is the rec recognition of the importance of education. In no other field does education play such a huge role. Any genetics interview, any genetics time is education. It's eds eds cages for the patient, and whoever is around s around you, nurse, all of us recognize this. The American College of Medical Genetics, the resources, voice for the profession to make genetic service available to and improve the health of the public in general.
American Society of Genetics is broader, but the education committee, goal is to identify and promote educational opportunities to improve the awareness. The American Board of Medical Genetics is the certifying board, how to maintain certification for ourselves and our training programs
A C M G has been a power house in working these educational initiatives. We discussed the importance of making genetics part of board examinations. The American college of medical genetics has several task forces, met in the past years to review questions on -- part one, two, and three. We found there are definitely improvements, from Darryl ener's presentation, I misspelled things here, I apologize. Improvement in the incorporation of these basic science questions. There's an increase in the part two and three, but the irony is very often when they give a clinical scenario family history is not part of it. The patient is presented, 57 year old man with chest pain and a cough. You don't know he has a family activity of hypercholesterol -- other family history not given. Effort needs to go on. There's definitely improvement, we hope it will expand with the use of virtual patient and -- scenarios.
Also working on the exposures of general clinical -- I invite you to go, understand -- interviewing someone who has neuro fib roam a to sis, to develop 10 of these video telecasts so people can have an idea of what geneticists actually do, provide models for those who want to look at what the role would be, what will your job be like. Also involved in looking at residency curriculums. We talked about this, collaborative effort, to promote the idea of medical Jeanette geneticist for --
Another key point, idea of expanding point of care reference systems, A C M G developed things called act sheets, in response to the expanded newborn screening programs where there issue at least 29 different things tested for, of which they may come back with positive findings, leading many people in the field to -- pull their hair and panic. They are very accessible, very knowledgeable and one of the interesting and very important issues right now is to incorporate these directly into our electronic medical record systems so they are an automatic pop-up for them. These protocols are going to be similar models for other activities such as those on siftic fibrosis, and involved on how to work these patients up, development on studies of mental retardation, developmental delay, actions of the American College.
The American Society of Human Genetics is focused not so much on the medical, but the understanding of genomics in general. The president emphasized one of the key things the public has is a fear of genetics, a fear that genetics will somehow make a superhuman person, someone basically made and will no longer be able to have the wonderful diversity, prioritizing what's good or bad. This is a chronic fear of the public. The come Society worked in K through 12 and K through 16, where there are developments of programs, a program called Gen-Ed net -- a worthwhile program where there's a database of genetic standards, at the K through 12 level. If you want to know how to teach genetics to a kid in kindergarten, you can find for your state what they will do. It's a wonderful program.
Other initiatives, DNA Day, essay contests, a prom call genetics education and outreach. American Society of Human Genetics has pairing a geneticist with an -- a way to incorporate basic genetic knowledge. Your kid is the one taking the piece of paper back to the family, saying I want to know what grandma had, what grandpa had, and the child is going to be the mover in that particular field.
They also run a wonderful undergraduate workshop, at every meeting, incorporating students, eds Kateor, as educators, as well as high school educators, key emphasis on education as key part of geneticist. Maintenance and certification, all of us must need as physicians, one point I would like to emphasize, in part 4, we want to emprove practice models with the right genetics modules for that to be translated to other specialties for their utilization in that particular area of training.
I'd like to conclude with some of my own thoughts about recommendations for this. It's clearly an improving trends in some points of medical genetics, but not enough. We need researchers on why people make choices for residencies. A lot is related to the fact they don't know anything about what medical genetics does or is. I would also like to suggest that maybe there's some role for sponsorship program. If we recognize that medical genetics is a key profession, that needs providers, maybe there is a role for a sponsorship program, much like we sponsor those who serve in inner cities or rural communities after their training employ we have to recognize if we are an academic center our practice patterns will reflect some of you are specialty training. And Judith will address more of that. We need to recognize within our institution some of that. Work with the issue of reimbursement. Financing our professional societies, work for education, education is not enough, as before, you have to put it in practice and develop a competency to reflect you actually can use that. Thank you. I welcome any questions.
APPLAUSE.
Thank you. We have five minutes for questions until break. I know we will get back to some of the questions you raised. We will start --
Question: Thank you for a very nice presentation. I am sorry to hear so many of the training programs are open. I guess the obvious question that prompts is what are the job opportunities? You are only geneticist at a fairly large center, obviously not room for more or -- I think that would drive, of course, the educational needs, could you expand on that in terms of where are the job opportunities and is that something that can improve?
I believe Jud ig the is going to speak on workforce issues. If we can defer that. I will let you comment in a second JUDITH. The key point is there are usually spaces available where people have the creativity to recognize the need. In genetics we all vs to market ourselves, not like they are limited, it's simply something people have not recognized there's a need.
Is Judith: I don't have statistics on unfilled positions, something we can get. But I will comment about the residency slots, the 196 slots approved are not all funded. We have 75 to 80 funded slots and we can't even fill those. What happens in hospitals, not funded, filled, we will take the funds and put it --
The other point that is missing here, again I refer to your fifth slide, which is colleges positioning of medical genetics as ideal for students seeking academic career, speaking as someone who is not an academic, has been quite -- has enjoyed private genetics practice. We may be the only specialty positioning ourselves as an academic career, you can do that, but opportunity in the private sector as well. This is a point I made to the organizers of Banbury one, no representation from the private sector there, addressed to some does he gree in Banbury 2. We have to engage with the private sector, there's a lot more money, more jobs, and there's a lot more need, quite honestly, in those settings than, I think, the market as Peter pointed out will, if the jobs become available, that will to some degree drive interest. As we talked about in the context of healthcare systems and payers, once we consistently create the knowledge that there's a need that will happen. Groups like northern California Kaiser, really have gotten the message, caken it forward for 30 years, successful examples of that model.
I would agree with that. I would comment that part of that was -- developed through the American college on medical genetics as residency program, emphasizing the comment, expanding role in the private sector.
Question: I would like to come back to CRs, the reimbursement, three Rs, the residency slots, the fact there's really no marketing of genetics. Here we are in the 21 St. From, people selling a whole genome on the street as we speak. It's really there's a major disconnect between the basic science and the marketing of that, the world of practice. This to me, the lack of translation, in a major way. I wanted to get your thoughts on the idea that you may only be selling a small part of what could be sold. If you look at -- I am a member of the college, all the societies, and we are selling genetic services, selling information -- individuals families, everywhere need the services. Conditions are rare, the average practitioner is the apriori probability of finding syndrome of disease is small. The genetic community, the various aspects of, sort of the information translators for what genetic information means to the average person or the average encounter of patients with their physicians, whether drugs or not. Coming back, I want to come back to the concept of evidence-based medicine, that's what the average practitioners need, guidelines and criteria. As long as we in the genetics community keep sending the genetics services model, applies to a fraction of genetics information, maybe we are missing a larger market out there. The mark the market that allows us to incorporate what others are trying to do, the information of genetic risk factors, and farm pharmacogenomics.
going to be an evolution, many of us started with a subspecialty of what we did before, pediatrics, O B GYG, internal medicine. If we are going to make this a 21 St. century model we have to expand. Some of the issues on how insurers will -- clearly going to be looking, saying this is a justifiable thing to do. If they do not say this is a justifiable thing to do, or needed, for example I have one insurer that will not reimburse me as complex consultation for genetics consultation, only moderate. That's clearly -- depends, what do you call complex? 90 minutes to get the information, that's pretty complex. Some has to be -- the entire changing time, you can't change one thing, you have to change the whole process. Some of it you have to -- genetics is sexy, we deal with sex all the time, you have to make it that way.
Reed V. Tuckson: Please, my God, some of us aren't ready for this.
We will do three quickies, real quick, then take the break, so no fooling around. One, two, three.
This is just a follow-up to what Marlena said, we need to think systematically, knowledge what healthcare systems need, be the knowledge resource. Some will be direct hands on patient care, some is being the intelligent filter of the information coming forward. If you don't do this right you will spend money that is valuable resources on things that really don't add value. So we need to be thinking from a more systematic way. We haven't been willing to engage, tended to remain in the academic model.
I was very pleased to see some of the improvements for the -- questions from the Board-specific for genetics. My concern comes, maybe we can discuss this later at the roundtable, for some movement is going on to reorganize the curriculum for medical schools to place more on the clinical sciences and decrease the basic science, the impact down the road. I don't know if you want to address this now, maybe discuss --
Reed V. Tuckson: We will put it in the notes to come back --
The question I have is regarding the high complexity visit with a clinical geneticist, what Norman Kahn said and -- expanding beyond the complexity, rare disease, redirective genetic testing, which we don't get reimbursement for easily with CMS right now. The paradigm needs to shift from high complexity to within the 15-minute visit, predictive evaluation of an individual's risk stratification part of the -- I don't see if moving into that part of the arena.
We will get that on the discussion as well. Important observation.
Lastly --
Thank you, symmetrical, the same comment in 2003, the last time I spoke. Evidence-based medicine, we ought to have evidence-based education. Medical genetics is not a growth industry as a medical specialty. The growth industry is in genetics and genomics and medicine, great excitement, consumers are there, all the other medical specialties recognize to greater or lesser degrees they need to figure out how to get genetics and genomics in them. The specialty of medical genetics where we are half empty, clearly not a growth industry. Two competing messages: One is, I think even in your own words you allude to this i the need to take care of the traditional business of medical genetics. Clearly there's a need. There are genetic disorders, genetic syndromes, and those kids who become adults need care, there's a medical home for those. The other disorders we don't want to call genetic disorders, to Joe's point, the medical community, consumers, don't believe those are the purview of medical genetics. They are the purview of the rest of medicine. Evidence-based education would tell us to steer elsewhere, separate from the somewhat smaller, equally important task of refilling the boat of medical geneticists, we will need a relatively small number, but we need them to deal with "genetics" going forward.
Reed V. Tuckson: We will stop, at 10:50 Angela will begin, you have to hustle, because Angela will start at 10:50.
[CAPTIONER TRANSITION, please hang up phone line and reanswer for captioning services. ]
referral. [ please hang up phone line and reanswer for captioning services to begin ]
The better, we just want it get paid.
I appreciate that. Just for the discussion, I want to make sure that everybody understands. Anybody that has a pay for healthcare services is basically saying at the end of the day there's got to be a clear-cut rules, everybody says that they're qualified to come forward and get paid. You need cry tear to say who is eligible and who is not. One accrediting body that takes care of this. Not 15 bodies. I want it get that. I just wanted to find out where it was.
I'm going to exert my power and ask you to save those for discussion later on. Thank you.
I would like to introduce Toby Citrin. Thank you for coming.
Thank you and good morning. I would like to comment very briefly on the significance of using the paradigm of genomics and talk about deman for knowledge in genomics, both as seen from the perspective of the schools and from the perspective of public health practice. To identify some of the barriers to stand in the way as well as identifying some of the facilitators that are moving the field forward. And them to summarize. Your earlier resolution in 2004 makes a point of the distinction between genetic and genomics. The CDC's website defines genomics in a useful way. For public health it's important to be using the genomics paradigm because it fits quiet well with causation of health and disease, which had been used in teaching and the practice of public health. Both of the land lark reports by the institute of medicine in 2003 make strong recommendations to use this model, multifactors, working from the identify out, from the outside in, over the lifetime. It's easy to incorporate the genomics framework within the ecological model. We are seeing movement both teaching and in practice from viewing genetics as a separate field of study and practice into genomics as being worthy of incorporating all of the fields of public health, both as taught and practiced.
Let's look at the rai at today. When you look at practice, the extent to which genetic or genomics are playing roles is still quite small. We have traditional newborn screening programs, testing within those programs, we have the early evidence of almost elemental utilization of family health history, prevention programs of disease, adding these as risk factors that are useful in programs for chronic decide. And we have early signs of the acceptance by some health departments of a role in health education to try to get the public to understand what we mean by genomics and how it relates to their health. By looking into the future, of course, we see an ever growing need for knowledge of genomics in public health practice. A number of comment taillighters talk of the revolution that will take place in public health. But the increasing knowledge of relative risk on an individual basis is going to shift the way that public health designs and implemented programs.
What will bring us to that point is the process of translation of research into methods and interventions that are seen as useful in improving population health.
Dr. corey wrote an article, in which he expounds on a four step process. It's a paradigm that does not simple pli, it applies to public health interventions.
Now moving to the academic side, in 2003, in the report on the teaching of public health called, cool keep the public healthy. Genomics is identified as one of eight content areas that needed to be taught to everyone going through a school of public health, in addition to or as incorporated in the five traditional areas that are the basis for public health education. And so we are seeing evidence that departments of epidemiology have a number of courses. Departments of biostatistics are teaching statistical genetics. Less evident, but important, is the add vent of incorporating genomics in the teaching of public health policy. And the teaching of the ethical, legal, social implications of genomics within health management and policy.
The significant increase that is occurring in the incorporation of genomics in health behavior and education. Not so much the influence of genetic, on genes on behavior, but rather the implications for genomicses for the way that human beings behave.
Let's move to the barriers and facilitators. We have the common resistance to any significant changes in curriculum. It's a constant through a number of the presentations this morning. Insufficient time that people feel already to convey information that is seen as necessary for public health professionals, in the sense that we're adding yet another overlay. Certainly a lack of expertise by the faculty. To a continuing extent, hopefully lessening over time, nonrecognition of the significance of genomics in public health. Still vees tajes of the teaching of genomics, by those that feel there is a zero sum game going on here. The more that one talks about genomics and talks about it, the less attention that one will pay to social and environmental factors. Just take a look at the article in your pacts, relating in that case to the proposed large population study. One can read in this article that same notion of the less than worth whileness, when trying to address serious issues of health disparates.
Same barriers in resistance to change. And more so in the public health setting these days because of tightening budgets, and a good example on how this serious this particular barrier is was the talk given by the jut going president Debra Kline walker, in which she really said that one cannot expect public health departments to take on the new fields of genetic, new approaches to disabilities when public health departments are being starved of resources to do the most fundamental core functions for which they were formed. We have a continuing evidence of a narrow focus on genomics, where genetic is seen as a subset of maternal and child health in the structure of health departments. And the lack of tools, the lack of evidence-based off the shelf tools that are seen as useful to public health professionals in addressing major health issues of populations.
Turning to the brighter side, what are the facilitators? Chief among them is the national office of public health genomics at CDC, which is the primary place where a continuing array of information of significance to public health and public health practice occurs in workshops and various trainings. Among its strategies have been the funding of two centers for genomics for public health. One at the university of Washington and the university of Michigan. CDC is funding four states to develop comprehensive genetic and genomics programs to establish models of how genetics needs to be addressed in a state public health department. A very bright light of the future, just two or three weeks old, the official formation of the genomics forum at the American American public health association, a group identifying themselves's academics who are interested in working together to further genomics.
Other facilitators and potential are the efforts unway to standardize competent Tennessees. Several years the CDC launched and funded an effort which ended up with a set of genomics competencies. There's a set of competent Tennessees for masters of health degrees. Unfortunately, in the enumeration of cross cutting competent Tennessees in this association of schools public health effort the is genetic, not genomics. One of the competent Tennessees is the competencies. There's a formal adoption by a group representing the schools of the need for genomics education in the schools.
Allegation of potential significance, -- also of potential significance there's a launch coming August of 2008 of a new examination for a certificate in public health. Which would apply to people who already have a masters, but want a form of credentialling which is on a set of competencies in public health. The examination will incorporate the competencies for the NPH degree that has come out of the association of the schools of public health. There will be a genetic component.
Looking at the number of centers in comparison to the last round table. We had a couple of graduate students do a web search. In 2004, there were ten schools of public health that had any kind of genetics program, most in the research area. 12 schools of public health that had courses that were identifiably genetics in their topic. And of those, a very splawl minority of schools had courses in the ethical, legal, social implications area. Significant progress since then. Ten now have centers on genetics and seven have curriculum tracks that highlight genetics. We counted a total 193 courses identified as genetics or genomics in the schools of public health. A small portion of those, 21, are the areas of health management, law, ethics, policy, the bulk of them continuing to be in the departments of epidemiology, biostatistics and health behavior and education.
Looking at the training of the current workforce, there are hundreds of sources of training materials on genetics and genomics available online. To my knowledge there's not been a comprehensive colags and compellation of these courses. There are several hundred, there are several places to go to see an array of them, one of them is the CDC website.
And the network of public health training centers that has developed a website, is searchable website identifies four courses that are identified as genomics courses.
Still very little progress in teaching or practice in diversifying the public health workforce with, that incorporates genetics in practice. It's an issue that runs through this field, when one looks at schools of public health, the growing diversity of the student population in schools of public health is not represented in courses or programs in public health. We have almost, between a quarter and a third of students from untd represented -- underrepresented minorities. In the course that I teach out of 29 students, only one student of color in the class, that's very typical and sad. If public health genomics is going to achieve its population it needs to be more representative. So finally, recommendations, in addition to trying to find a way out of this problem of achieving diversity the schools and the health departments need to implement the recommendations on genomics in both of the reports. We need to gather together a way to gather the data. Incorporate it in a variety of public health courses. Need to achieve a sharing of models of genomics teaching as a way to address the lack of competency in faculty members to develop their courses, or develop their case studies to incorporate in courses that ought to have a genetic component. Consideration needs to be given to have genomics addressed. Public health education not only needs to increase their focus on genetic but on ethical, legal, social implications of genetics. Some of us would like to see the fiscal ability of CDC to broaden the network of genomicses in public health standards to a more regional basis to serve the needs and the potential of health departments throughout the country. Thank you. [ Applause ]
Thank you, very much. That was a great overview of the public health efforts. With apologies to everyone we're going to hold questions. I promise we'll save a half hour for general discussions.
The next four were asked to come, were involved in the steering committee. They're taking on the difficult task of limiting their talks to five minutes. The first is David S. Wilkinson. Thank you.
Going to do it the old-fashioned way, without slides. Thank you for this opportunity to comment on the state of genetic, education in clinical laboratory personnel. I would like to start with the most important part, the core of the people that work are medical technology. These folks are trained at the back lawyer et level. The programs are accredited by the national accrediting agency for clinical laboratory sciences. They training training in genetic, molecular biology. They do not specify the topics. They generally do not have a requirement for any particulars of a specific course in genetic. These folks are very well grounded in the basics of genetics. However we find in our own laboratory, that these folks as they come out with their degree in medical technology or medical lab sciences are not ready to perform the testing that we have in a high complexity lab. [ Indiscernible ] and they do require significant on the job training. They're great to work with. We can get them up to speed, but they're not ready to go to the bench right out of school.
I would like to make comments about education. Some reference has been made that genetic is taught in the first or second year of medical school. That reference was made earlier. That is minimal education in genetics in the third and fourth years. Hopefully it's increasing in the clinical years. Now I raise that because, a reference has been made to the license exam which is currently administered in three steps.
The first step for the exam, which is the uniform approach to licensing in the United States covers the basic sciences. Step two is in the fourth year of medical school. There is a move afoot to compress stem one and two into one exam in the fourth year of medical school. Depending on who you listen to the reason is to increase, to increase the requirement for students to retain basic science information into their fourth year. As opposed to learn it and not it for the next two years. However, at this point, this gets back to the comments about resistance to change. Most science departments, of which pathology is one, are concerned that this may have the effect of deemphasizing the emphasis on the basic sciences. I've seen editorials in big papers saying why do doctors need all of this basic science? Which I think is bologna. So I'm concerned about that. I think this needs to be studied in great detail before a change is made. Right now they know they have to bone up and be ready to deliver the goods on that step one exam.
Let's move on to graduate medical education. The content of genetics in programs varies quite a bit. Let me comment on pathology. The governing bodies of the [ Indiscernible ] the RRCs. And the RRC does require training in genetic, molecular biology. It does not specify the amount of time or content. I have to admit that the experience that residents get, about 154 residency training programs in the United States. The experience that they get will vary quite a bit. We basically run the clinical labs in America. We do have people coming with somewhat variable experiences. There's a subspecialty fellowship in molecular genetic pathology. This fellowship was referenced by Dr. Melissa Fries. This is a one year fellowship devoted to genetics, including exposure to counseling and diagnostics.
There's relatively few of these accredited programs. We are fortunate to have one at VCU.
The final step in the continuum of medical education, is continuing education throughout your career. Education and training and the aspects of molecular biology and genetics. Within the college we have a cluster of committees focused on pathology and genetics. Two are staffed by members of the college of pathologists. One of these deals with molecular genetics. The other is the sight genetic. They bring together the two specialties to oversee the development of new products and ongoing education. The other areas are histo compatibility, which is now with the DNA basis, microbiology and another committee called the molecular on koelgy committee. What these committees do is to manage the development and ongoing changes in the college of American palatologists -- pathologists. This is what you use to get accredited. You can get a certificate through the college program. The check lists are the changes that labs have to follow to make sure that they're being complaint with CLIA. The CLIA regulations form a strong foundation for ensuring the quality of clinical laboratory testing in all areas. These committees also manage, create, and evaluate proficiency testing. This is an important important part. These committees Jen rate educational programs, which they provide to practitioners in the area. [ Applause ]
Thank you. I appreciate the challenge of having so much information, but so little time. Next is Michael A. Rackover who is representing physicians assists.
Thank you for being present today. I represent the PA, the accreditation review for the PA, the NCCPA, certification and testing.
In the last year it's been a phenomenal year. We met at the NIH, we had a model that all of the organizations that came to this meeting. At this meeting it was a top down model. Had to be the presidents of the organizations. The movers and shakers of the organizations to help understand the challenge that we have in providing the clinical services in genetics. I can give you a short break down. I'll talk about each organization quickly to give you a sense of who we are. There's about 64,000P As clinical practice. With minorities in practice, about 12% are minorities, new grads are 17%, and education right now in the classroom is 23% minorities. Our hope is over the next ten years is that we will, by 2010 we'll have about 90,000 practitioners. In the future we need 115 to 130,000 by the year of 2020.
We know where we're working. We're working all over in every special. HMOs, group practices, hospitals. 52% of these PAs see inpatient. Our graph is all over. PAs are part of the team wherever you see physicians. We're giving CMEs in providing genetics education.
We are are now up on this website, this is continuing medical education for graduate medical assists.
We have have about 139PA programs across the United States. The number of recent graduates in 2006, over 4800 students. We have models for competencies, we've written an article about clinical competency guidelines on the educational front. We were also able to do a survey and a needs and assessment for the programs across the country. This survey represented a 75% response rate. We're looking at how to determine how genetics is taught in PA programs. We wanted to determine what is covered and assess faculty needs. This is the conglomerate of the slides. How do you restructure an existing overpacked curriculum? But we're able to get the information in. We also realize it's not seen as a priority. And certainly the problem is lack ever time. Disperceiveed the need to enhance the genetics program. Our hope and my hope is that the educators will lead in the teaching. What I hope to be able to provide with our colleagues is how we will monitor and report innovations, develop best practices, create faculty development, develop a database. The standards that we're after, in September of 2006 we included the instructions on the professional stage of the program. So we're now seeing that medical genetics or parent care is taught throughout the whole program. The national commission on certification is the NCPPA. They're at the table. We're looking at exam content and we're beginning to code new material on the exams. They're hiring a new exam writer. During this year they're promoting their board of directors about medical genetics. The AAPA is the profession, we have a major commitment to provide medical genetics education to our graduates. We're working together to make sure that we have a methodology to train the trainers. We have a commitment to make sure that it's seen in the classroom and in the clinical.
We're all working together, we consider this to be an model of success. I thank you for the five minutes of time. Thank you. [ Applause ]
That were perfect, thank you. The next speaker is Ann K. Cashion.
Thank you for asking me here today. I want to give credit to Cincy prows from the Cincinnati children's hospital for the slides. A longer version was originally presented earlier this year at a panel for nurses, genetic education.
How do nurses obtain genetic training? There's many avenues, however there are about 3 million nurses to update and keep updated. That's one of the areas that Beth Pestka spoke about earlier. Right now we have less than 10 formal BS, MSN and preage post doctoral areas. Two areas are the significant players, the NINR and NINH, had 121 graduates and the genetic program for nurses that is conducted through the Cincinnati children's hospital. Both are provided nurses that have gone back to their institutions and have tried to incorporate genomics into their teaching models there. We have continuing education opportunities, those are throughout our professional organizations. There are many gaps that we have identified that need to be filled for us to continue this growing momentum, to incorporate more genetic and genomics content. We have basically, we need to look at the levels of genetics and genomics needed by faculty. And how to make it more accessible. Currently the international society of nurses in genetics has a scope and standards much practices. This document has actually helped us to identify the difficult levels of genetic nurses that are out there and the competencies. Another resource that is provided over the last couple of years is the essential nursing competencies and curricular guidelines. This helps us to address what we think that practices nurses should know. This is all practices nurses. These are really genetic nurses. We have that dichotomy going on. And how we think that different levels and skill sets are needed for the multitude of nurses in practice. We also look at instructional resources, which are what our consisting CEs. How do we decrease the burden of adding more content to dense curriculum but still allow for academic freedom? And how do we help clinical faculty to structure this content?
Two big issues, one resources are created, how are they maintained and updated and how is peer review part of this process?
What can we do to influence the use of interdisciplinary resources? What can we do to influence the use of genetic nursing courses shared among universitied? The southern research educational board has a model for this. We're trying to institute a course that has some clinical content in it as well. It would be taught online at one of our universities and then students from other universities could register, we're looking at shared resources as well. Thank you, very much. [ Applause ]
Ann, thank you. Our final speaker is Judith Benkendorf. She's going to offer a perspective on the workforce issues, thank you.
Great, good morning. Thank you. It's a pleasure to be here. I thought I would give you my bottom line first. This is a talk where I will tell you what you already know. The genetic workforce is small. Unequally distributed geographically. Um, this is, I think, ut owe, I just hit the wrong button. Let's see if I can make this advance. Okay. All right, um, what is striking in light of the latest announcements, [ Indiscernible ]. What does our genetic workforce look like? I'll tell you that these data is from the American board of genetics and from our workforce study and both of the publications are in your pacts. 4700 individuals who hold certificates in a medical genetics profession. Half are genetic counsels, the other half are MDs and PHDs. Remember, not all of these individuals are still alive. Not all of them live or work in the United States. So we're probably a little smaller. We're not very diverse. The counselors are the fastest growing coheart, but still only 6% are men, 9% with minority. If you look at the U.S. population of about 103 million that's 1 counselor for 127,000 U.S. population. Sitting here in DC I'm told there's one lawyer for every 17 of us, so we're slightly outnumbered. Thank you, Paul. What do the MD geneticists look like? We're less than .02 of all of the physicians in the United States. A recent survey done through the American board of American genetics, we learned that these individuals spend only 45% of their time seeing patient. We have to have divide that time out. The best data to find for how many geneticists there should be, comes from the world college of physicians that estimates about 1 for each 250 thousand people is the ideal. We need 1200 full-time equivalent medical geneticists. We're not quite half way. This is just a graph of certification trends. The board cycle is now compressed to two years. I estimated this for a three year cycle. To show you the trends that are growing the fastest. We're no longer offering the PHD imam after this cycle. The workforce situation is critical. I put that in red, we can't emphasize that sufficiently. Young physicians are not entering our field. You can hear this cry. I go to a number of meetings. They're all saying that young physicians are not entering. This is not going to help with the emerging shortage coming down the pike. Many states are identified as having an inadequate number of geneticists. Geneticists have to take care of patients from across the life span. [ Indiscernible ] if you have epilepsy go to the medical center across the street. We can no longer aforward tad that. A picture is worth a thousand words. This is only 509 people. But the lighter the state the fewer the geneticists. You see some states with gray. There are none in these states. The darker blue have a large population and more geneticists. There's a bit of a misNomer, Maryland comes up high, but remember that our friends at the NIH are not doing clinical practice. So that is a bit skewed.
We're expanding newborn screening and more decides are being thought of for the panel.
More people will entering the system every year.
Exactly 200 also have a MD degree. This is the group that is least able to expand services. This is based on 20 03 data. 20% are expected to retire in the next five years, there's only one more year left. Several states were unavailable to expand their newborn screening bans due to a shortage of physicians. This is serious.
One thing that is said, there is no federal funding for training medical geneticists. So what, anyone ASMC is asked for advice we ask them to put in funding. 1858, which is the newborn screening was just reported out of the committee, it does have money for education. We also have one ASMC for the fellowship position. We have, our board has approved the creation of our first clinical geneticists subspecialization. This is the medical biochemical. We're going to be seeing more of that, I think. As Melissa said, we need to recruit. How can we inprove? At the end of the conference they realized that many around the room weren't all talking about the same thing. We brought people together back to the center a year and a half ago to define the domain. How can you wry curriculum if you don't know what you're training people to do? This document is about to be published in geneticists and medicine. We still call it ban bury three anyway. We're going to develop training for genetic. I'm not going to go through all of these principals. I will just highlight a couple of those. The first one is we're dedicated to improving the health of individuals and that we see patient across the life span. For conditions involving all organ systems. We also have a public health interest. We need to be anymorable. -- nimble.
And a little bit about how we practice, we're and remain a team-based sport. We're interested in the translation of new technologies into healthcare, more outcomes.
Many of these concepts have already been said today.
I will end with the last slide. I'm from the American college of American genetics and we're here to help. We now have a tag line which is translating genes into health. We're working on a branding campaign. We have a media advicer working with us. You will be soon be seeing the rollout of trying to put us more in the eyes of the public of the individuals that translate genes into health and healthcare. [ Indiscernible ] in his address in 2001, talked about opening the tent. We have to open the training tent to expand the work force. We've got to expand our number of joint training programs programs. Again, realigning the training efforts to involve common disease, which is often very, very complex. It's not simple. It does involve a teaching of gene environment and healthcare throughout the life span.
We have to be cog disanlt of how genetic services will be distributed. There's a lull for the medical geneticists. We need to keep our eyes on the ball. I'm pleased to say that several of companies have approached us looking for a way to use us for resources.
We want to be able to provide adequate clinical support to the range of service settings. There's not enough of us going around. We're supposed to be the educators of everyone else, we're going to see all of these patient, and reach out to the rural areas, doing a lot to push tele medicine. We're looking at new training,. Some of us need to be writing these tools and developing and testing and evaluating them to make sure that they're working. Am I getting tired going through this. We need to get ahead of the 8 ball. So that the workforce will grow. It will take a multipronged approach and a multidisciplinary one. I think I'll stop there, thank you.
Thank you. That was a mind full. I'm really happy to open up the table now. We will use this time to address questions to our guests to come here and talk with us. We'll start with Paul.
One question for you all. I was trying to follow the discussion as best I could. I want you to be thinking. This is not necessary right. You probably have your only constructs. Is there a problem? Is there a problem here that deals with genetic exceptionalism or just medicine? Is there something about genetic exceptionalism? Is the problem with the availability of expertise? By disciplines? By diversity? Whether it's the individual dock or the professional level? Is there a problem because of compromised patient care? second, is there something that the secretary can do? Is it through connectist to others of our reports like the oversight discussion we're going to have? Or through the reimbursement program? That whole big thing. Is there something that the secretary can do with CMC in terms of payment. We will not pay for this or that unless you have proven that you have kept up with your level of education. It may not be that you need to beg and plead to a CME course. If you haven't kept up with the board certification you don't get the [ Indiscernible ] bucks. You could that draconian. Is there something that the profession should be doing themselves? The societies, the boards? I want to keep the, I'm not sure if that's helpful. You're to ask questions that get you to a conclusion. Don't ask questions just because you are interested. You get to ask questions about yes or no you want a subcommittee an what you will charge them with.
I would just add to Reed's questions, I had two, what is the role of SACGHS in this discussion and also I'm interested in the met wricks that we -- metrics we look to. What are the metrics that we should be looking at. I have points, one is a number of you mentioned diversity issues. I understand that, I acknowledge and agree that's an important piece, but none of you mentioned, I would encourage you to also think about people with disabilities in the profession. People in disabilities are a medically under served and under represented population when it comes to the healthcare professionals and with respect to genetics and think of people with disabilities as patient as opposed to a community that brings something to the table in terms of understanding the experience of living with a disability, or having a disability, it is something that is very unique and equally valued in terms of, with respect to diversity. My question is, I want to piggyback on something else that Reed said, in terms of the question that he asked before the break, who is qualified to make judgments about this? We have groups that are thinking about genetics in different ways and wondering if there's a role for the SACGHS in bringing groups together in talking about what are qualified genetic professionals? And whether the overarching group is something that can bring the individual groups together to talk about that issue.
Comments?
First I whether or not like to thank everyone for this wonderful tour deforce this morning. The question that I have for everyone. I'm glad to hear Judith's talk. That was really music to my ears. As we make this transition, so to speak, from the paradigm of taking care of people with genetic diseases and their families and communities, to how to deal with genetic information in general, whether it's [ Indiscernible ] or gene expressions, or taking drugs. Would like to get your thoughts about how do you think this should be done, given the lack of the workforce, the numbers are not going up. If you do [ Indiscernible ], I like your statistics, one person, one lawyer per 17 in D.C. You should think about how many geneticists you need per [ Indiscernible ]. Those numbers could be a little bit more, a little bit. . What is the role of the new genomics person? Whether it's a counselor, nurses, what do they have to do to translate genes to health? And what is the role of evidence-based practice? And how can the new geneticist incorporate and use it? Without it there is really no payment for services. Let's face it, that's the current problem here. It's not the traditional model of genetic information is valuable per se. We have to sell why is it value to improve case. Let me open that up.
[ Inaudible ]. I can look from the different roles. Evidence-based medicine is largely based on large studies that are made of practice patterns widdling down things [ Indiscernible ] we've always done it this way to actual evidence that this makes a difference. The differences of genetics is when you're looking at it as a residency specialty since 1992 it has not got that body of practice information. So you would have to incorporate some of all specialties practices and incorporate genetics into those to assess that. [ Indiscernible ] it's based on the [ Indiscernible ] of experiences of the patient. It's going to need a different development and pattern. However that doesn't mean that it can't be done. The way it has to be done is the way that it's done anywhere in medicine, look at innovative strategies and set up large sponsored trials of those strategies as a comprehensive group. I think that is an area where this group could be very influential in funding and support of those kinds of strategies.
Mara, then Joseph.
[ Inaudible ].
Two questions on the table. This may be the only thing that I have to contribute to this conversation, the answer to this question. You asked what is the problem and what can the secretary do about it? And I would give you a simple take away. I think the problem is integrating genomics into the daily practice of our professionals. It's about taking care of people. What can the secretary do about integrating genomics? I would suggest that the most important thing is focus on decisions forward. Now, there will be a component of education that is necessary. The clinicians will need to know what is in that decision support. But the clinical decision support is where people are being taken care of. That's how you integrate this information into clinical practice.
Wow. A comment about support?
I wanted to make a comment about decision support. Our newborn screening was mentioned. The idea was to get these into the hands of the primary care providers. The laboratories do send them out with all of the positive test results. The next [ Indiscernible ] are for genetic tests ordered by physicians to be [ Indiscernible ] by the laboratories. We're doing two things. One that is one identified these as a pro toe type and they're going to be ingrated into medical records as a point of care tool. We're going to be evaluating how that works. And then the other thing is that the ASMG has funding for a meeting for all of the EMR industry folks to talk about decision support tools.
We be hitting these issues again. There is a considerable part of this that will be addressed again.
A quick comment. We need to get the [ Indiscernible ] built fast. Everybody at this table, before we leave should make a phone call. Without that the students need to hear that, they don't have to hear that they're concerned about the ethics behind the genetic bill.
You're preaching to the choir. You can't make that call today, after today you can call.
Tell your friends in Oklahoma to make the call.
Not today.
Um, thank you. Again, this has been impressive. I was struck by a couple of things. First, how much is being done. And it's great to see that. That said, two missing elements, one is I think there's one consequentcy not here, which is industry. And how much industry is in doing in individual organizations and as a group to come together. I'm not just talking about funding, which is a piece that several of you mentioned. I think that's a component. The second, Reed from what you said this may come up again, a window of opportunity with the coming of the electronic health records. I believe there is a window of opportunity, I've heard too many times about great new practice guidelines, new tests, new information that can't fit into a system. If anyone has changed a system, you don't want to do it once. I think there's a window of opportunity now. That said, in terms of context, my question is, do you work together? Is this the first time that all of you have come together? Or do you really share your breast practices across the organization -- best practices across the organization?
So, um, I don't think that we have worked together to the extent that you would hope we have. In terms of being aware of one another's metrics. I can say that we have worked with virtually organizations at this table. That's not just because we have reached out to them, they have reached out to us. We do work together. It's a small community in many ways. Those of us interested in genetics, perhaps a little too inbred. Geneticists ought to be aware of that kind of behavior. We welcome input from other groups as well. One of the things that we do, we reach out to the extent to be to a lot of groups not in the genetic community. We ask what they need. This goes to back to Dr. [ Indiscernible ]'s statement. Looking at genetics through a nurse's lens, or a PA lens. We do talk to one another. We try very hard to make the education relevant for the practitioners. Somebody talked about champions before. That's very important. We are aware there are few champions within some of these professionals. The PAs are very large. We have to clonal the champions -- clone the champions.
I think that's helpful. I do believe that some of the best programs, you don't have to re-create the wheel. Again, with industry I think there may be a role for a convening organization to help you do that in an efficient way.
I will tell you, however, that there is a fair amount of parolallism across all disciplines. There's some sense if we didn't develop it ourselves it's not right for us. We just don't have the resources to, to, I use the word squander on that approach. There's a set of core principals that are broadly applicantable. That's one of the things we hope more as well. We're on that page. We don't want to re-create wheels.
Joe, and then Julio.
[ Indiscernible ] about the genetics companies offering 1 million [ Indiscernible ] to consumers. I know that people offer -- what I see as a mismatch. I was part of the training program. I had somebody that trained with me in the program. I'm familiar with that structure. And I don't know how to say this. If has a background has ee resolved. -- evolved. You have this collision of information. Which is not about the risk of typical genetic diseases. And how equipped are the people that go through the different training programs. The person gets a test and they're going to want to go to a professional. They're going to go to them to have them digest it for them. Are the professionals equipped to do this? What is the situation? How are you going to handle this direct to consumer effort? There's a lot of different positions. You could embrace it, or you could be cautious. What is your perspective?
I think it depends on how you define professional. If you're talking about genetics. They're equipped to handle this. The average PCP is clueless when confronted with some of these test results. We'll be meeting with the 23 [ Indiscernible ] people soon to talk about activities to what Judith Benkendorf was discussing. If I were trying to integrate genetics into medical education, or education of PAs or nurses I would take one of those test results into my class and say, look, some day soon a patient is going to walk in with this and what are going to do and what do you need to know? How are you going to handle this? I think there's a real opportunity for us. Maybe these companies are pushing us faster than we were willing to push ourselves.
If I could response to that. I have that part of me that mind set that is working on that. I also teach under graduate students. People say what do you teach? What is the content? Over the last six years I found that the most influential content that teach is how to be the lifelong learner. We focus on websites. We go to websites every day and look at them. We do the family health initiative. They have to do it on their families. We bring in, we didn't have the gene chip information that is now out there by the three companies. I also teach advance practice nurses, they're the ones, people are coming in and want to know. How to look for the knowledge. Whatever I teach them today is almost out of, out of, it's not useful in two or three months from now. I really do not teach content as much as I teach how to learn and maintain skills.
Thank you.
I would like to add to that as well. I think as much of the answer of this question is in the patient's hands. They're learning. The video snip that I showed, almost all of the patient comes in and have hopes and expectations. We need to be prepared to deal with them. I believe there's a place for our experts, our geneticists, but there are not enough. We need to have all healthcare providers educatorred and have a body of experts to refer to with the complex cases.
We need to close out. Was there one more?
I just wanted to -- it seems to me that Dr. [ Indiscernible ]'s comment is true of public health. It addresses Dr. [ Indiscernible ]'s question about the side of the workforce. We don't need a larger faculty in our school of public health to incorporate genomicses. We just need people that are teaching to incorporate genomics. To some extent we've been successful. The same is true of public health departments. They need to incorporate family health history in what they do. It is very much a training and education question. I think this also relates very much to Reed V. Tuckson's question. If we do not do, if we do not move the educational process forward this way the public will be seeing genomics as genetic, as segmented because the private sector is moving in that direction. They think that genes are more and more responsible for ills. The net result of that will be genetic tools, a worsening of disparities as these tools are available to some and not to others, a sense genetic determism termism. It is the integration of genetics are all of the other factors with health and disease that are our defense against doing less and having the forces that are moving very fast distort people's views.
Well, eloquently stated. First of all, we have benefitted from a terrific panel. Not only did we get smart people, but people that know how to express smart ideas. We really appreciate it. Let's give them a round of applause. Just terrific, just terrific. Here's our dilemma, we have a very power packed session this afternoon. A lot of this material that we just heard, is part of some of that. But there's still not going to be, even under the most blessed of circumstances enough time to get everything squared away. I would propose, I think there's something here that is going to require a deeper deliberation by us. I would be surprise, but I'm open for someone to object, that would say in the broadest of unformed terms there is work that this committee will want to pursue in this area. Unless I hear someone screen out this is all solved, I think we're going to wind up creating a subcommittee to take another look. What I cannot do, nor do I think we're prepared for is to define the agenda, the scope of that work yet. So as the afternoon unfolds we're be thinking about that. Something will arise out of the oversight conversation. I know that Barbara you will not be able to be with us. I'm going to draw mara into this and a few others, but not Joe, he's disruptive sometimes. The question about do we all talk to each other? One thing that I think is frustrating, when we try to ask who is qualified to do what, particularly when it comes to counseling and who then should be qualified to do counseling and what is the reimbursement? This issue comes up over and over and over again. And we have asked over and over and over again for all of the factions to sit down together and figure it out, create an umbrella and bring it back. I think that now, as I get more mature in this is an unreasonable expectation. And therefore I believe it is a role that we might play to try to be a convener of the conversation. I don't need to get one more letter from one or organization that just rehearses what we wrote five years ago. So clearly we're not getting the message. We need to step up to the plate. That would be one thing that we would do. [ captioner transition, please hang up phone line and answer for captioner to continue. ]
CAPTIONER TRANSITION, please hang up and reanswer audio line.
Please hang up and re-answer telephone audio line for captioner.
... I wanted to say thank you for your great work on this committee. Since 2005, the committee has had the benefit of your participation, perspective, and these matters are things that get right to where they are supposed to get, participation of the large population studies, and also gene patent and licensing issues. I wanted to say thank you to you, for your service. I know I say to everyone in had this room at the same time it's a wonderful thing to participate, and a sacrifice. We appreciate it.
I say thanks to those who aren't with us, Cynthia Barry, with us, with the original committee. Dr. Hunt willard, and thanks for your excellent service on behalf of the Secretary and the Department.
Thank you.
APPLAUSE.
You know that your schedule is very busy today, obviously at some point you will have to leave us, but please stay as long as possible, and don't be shy when you have to go, we understand.
We have to say one thing to the troubadour.
You cannot get the presidential medal of freedom, the nation's highest civil award and not be noticed by your colleagues around this table. Now, I know you are turning red, I don't have to look, but everyone around this table understands that only -- you get awarded that, to those who made especially meritorious contributions to the country. You got it for your leadership in the human genome project, paving the way for applications not easily diagnosed. You got this on November 5, a major White House ceremony. You were praised for your relentless pursuit of knowledge and extraordinary intellect. I noticed that the president likened the projake project to the Apollo project in scope. A wise, human scientist, behind achievements in genetics. Francis, you are not only smart and brilliant, but you are collegial. It's a rare gift for a committee like us to have someone not smart but knows how to play nice. Work with people, not have a massive ego the point you can't sit down and have discourse, dialogue, come up with shared accomplishments. You have always prided yourself in terms of the way you demonstrate here, being a member of the team, member of sharing. Dear Dr. Troubadour, we really do honor you.
APPLAUSE.
I have to say thank you so much to my dear colleagues for that. I value the collegiality on this, I have wrestled with a lot of issues, I suppose you were exposed to a different facet of me earlier today. What happened in the medal of freedom, I got the call from the White House, a stunning call, to say this was going to happen, the person who called, someone on the White House staff hi not met described the event. I was by