Scientist Stories: Susan McDaniel, Genetics & Family Dynamics

Hello everybody, and thank you very much for the honor of speaking with you here today. I came one other time to your conference, the one in Nuremberg, and I really enjoyed it, found it very stimulating. So I'm very happy to be here, and thank you for that great talk, Ramona. I'm going to do something pretty entirely different, but perhaps it'll be going at it just from a different angle. So I want to tell you a little bit about where I am so that it makes sense what I'm going to talk about. The University of Rochester Medical School is probably best known for— as the home of George Engel, Dr. Engel was an internist who first described the biopsychosocial approach to healthcare, which is a framework that incorporates but expands the biomedical model to include psychosocial issues. Lyman Wynne was a psychologist and a psychiatrist who was one of the early pioneers in family therapy and then came to be the chair of psychiatry at the University of Rochester. So my work really combines that of these two great men, applying a family systems perspective to a biopsychosocial understanding of health and illness. And I really think this biopsychosocial systems approach best describes the complexity of human experience, including genetics. So I spend time thinking about how physicians, including geneticists and other health professionals like genetic counselors or psychologists, can make use of the inevitable family dynamics that show up in our offices even when we see individual patients. So— that's a great cartoon, isn't it? For background, my family physician colleagues and I first adapted Family Systems Theory to primary care in the 1980s. So family-oriented primary care is the curriculum that we use with the family medicine residents and the medical students to teach this approach. And while I was doing this work, along with a couple of other colleagues, it began to dawn on us that psychotherapy in general really isn't biopsychosocial. In primary care, we were working hard to heal the mind-body split, but in mental health, we were still acting back then as if the mind-body split was a reality. So in the 1990s, I worked with these two other psychologists, Jerry Hepworth and Bill Doherty, to develop a biopsychosocial systems approach to psychotherapy. Which we call medical family therapy and integrated care. And both of these approaches have been updated in recent years. So I've always had an, an interest at the interface of biology and psychosocial issues, especially those that involve the family directly. So I did psychological evaluations for donors and recipients of in vitro fertilization since it began in the '80s. I still do them. In the '90s, I began working with geneticists on families struggling with genetic disorders. As scientists were working to map the human genome, I realized that work would enable clinicians to find out who is at genetic risk for some illnesses. But I knew we also needed a biopsychosocial risk assessment. In addition to who's at risk for some illnesses, we need to know who in this group is at risk emotionally and who's at risk relationally. So I worked on these issues with family psychiatrist John Rowland, health psychologist Suzanne Miller, and family nurse researcher Suzanne Fiedem. We wanted to pull together across disciplines what's known about the psychosocial aspects of genetic testing and the family experience of genetic disorders. And so we published this work in 2006 with a foreword by Francis Collins. So my latest interest over the last 5 years or so builds on this biopsychosocial approach to healthcare but focuses more on improving communication skills, those of physicians at and other health professionals with patients, families, and each other. So it's this University of Rochester physician faculty communication coaching program that I want to talk about with you today, sharing what I found in general and how it might apply to communication about genetics. So in this process, I've become interested in studies showing why as many as 40% 40% of patients in general do not adhere to their treatment plans. So in medicine, we're missing something here in our approaches, and these people are missing opportunities to improve their health. Some of it may be located in our understanding of the patient and some in the patient's understanding of our communication. In another blockbuster study, that should be the focus for many of us, patients independent of intelligence could recall less than half of what was communicated to them in a doctor's visit when research assistants or medical students interviewed them right after the visit. Surely this communication problem has something to do with the low rate of patient adherence in general. If patients don't understand or remember what's suggested, it's highly unlikely they're going to follow our advice. So turning to genetic communication, while some individual studies show promising results, and I've heard some of them at this meeting, perhaps similar to the adherence studies, meta-analysis show that communicating DNA-based risk results has not demonstrated any significant behavior change in common conditions where risk could actually be reduced by behavior change. So the behaviors, as you know, examined in these studies include smoking, alcohol use, medication, sun protection, diet, and exercise. So these authors conclude these results don't support use of genetic testing or the search for risk-conferring gene variants for common complex diseases on the basis that they motivate risk-reducing behavior. Might have other reasons, but not for that. So I'm thinking as I'm reviewing this literature, what is going on here? Is it just that geneticists and genetic counselors are rational and the rest of the human race isn't? Is it something about the way we communicate the information? Do we understand enough about our patients to tailor the information to their needs and desires? Certainly there are many papers about communicating risk, and yet I think we can safely say that we have not nailed the best way of communicating so that we are confident we provide good information that patients understand and connect to their own health beliefs, values, and realities. Recent papers about communicating risk cover deciding what information to disclose, tailoring it to the patient, streamlining it, understanding the context, and, as this author said, accepting this information may have little influence. So I don't know about you, but I found this pretty depressing. So I wonder if a biopsychosocial family-oriented approach to communication about genetic testing and counseling might yield a better result. So my suggestions about this tonight are purely hypothesis generating. There are approaches that have been shown to work with other health conditions but have yet to be studied with genetics. So to explore this possibility, I'll start with describing our physician-faculty communication coaching program, the results from our initial study across our medical center, and then share some very preliminary data about its application in genetics, drawing from my observations of our genetic counselor and geneticist. But in general, I'm interested in lessening the gap between communicating scientific knowledge about genetics and its usefulness as perceived by our patients and families. Okay, so first, our coaching program that was done is designed for general physician faculty across the University of Rochester Medical Center. So the goal from the beginning of this program was to develop a personalized, evidence-based program that's helpful to the most as well as least experienced physicians. We want to promote a culture of support and feedback throughout a physician's clinical career. We could say the same about genetic counselors or psychologists for that matter. So, I agree with Atul Gawande, who's a surgeon, writes in The New Yorker magazine, everyone deserves a coach. He wrote an article in 2011 in The New Yorker called "Personal Best," in which he describes hiring a coach to observe and provide feedback on his surgical skills in the operating room. The subtitle for his article is, top athletes and singers have coaches, Should you? His point is that other high-performing professionals have coaches throughout their career, but somehow physicians and other health professionals train and then rarely have coaching after training is complete. Under this drawing from his article, Gawande says, "No matter how well-trained people are, few can sustain their best performances on their own, and that's where coaching comes in." His article describes well the anxiety most of us feel at being observed and then the reward that comes with being accurately seen and receiving useful feedback. It's a very good article about the coaching process, whether it's about technical or communication skills. Several years ago, knowing of my interest in communication, the Dean asked if I could develop a program to improve our physician faculty's communication skills. Communication skills. So my first step was to conduct a pilot study so I could shape the coaching program to the needs of our University of Rochester faculty. This began with a list of 32 communication behaviors generated by our clinical leaders across the medical center. I then asked these leaders to vote for the most important of these behaviors, and so I got them down to 8. And from these, I selected 3 behaviors known to be associated in the literature with both improved patient satisfaction and quality. So for ease of memory and because physicians have to have acronyms for everything, I, in a moment of a boring meeting, I came up with ICU. Get it? I for introduce yourself and your role to your new patients. C for ask about patient and family concerns early in the interview. And U for check for the patient's understanding about the diagnosis and treatment plan. It all sounds very simple. The observational coding sheet I use is from the evidence-based Calgary-Cambridge Patient-Centered Care Observational Coding System. And then I added these ICU behaviors and some behaviors based on my own doctor-patient communication research. And the checklist, as you'll see, has a lot on it. But I just foc— and I coded all of that, but I just focused on the ICU behaviors for the study. So for the pilot, I shadowed 12 physicians, 6 surgeons and 6 non-surgeons. 6 patients with high— I mean, 6 physicians with high patient satisfaction scores and 6 with low patient satisfaction scores. And then it just turned out to be 8 men and 4 women. I spent half a day with each of these physician faculty and observed them wherever they were in inpatient practice and outpatient practice. And I filled out a coding sheet on each doctor-patient interaction. And I saw a total of 75 patient encounters. I don't talk to the physicians ahead of time about what I'm specifically observing. I just ask them if they want any feedback about specific things with regard to their communication. And very occasionally they say something, but usually they don't. So, this is a slide This is a compressed view of the coding sheet. And I use one of these for each time the patient's observed and check off the behaviors. Did they introduce themselves to a new patient? Did they greet a family member? Did they ask about the patient's concerns? And then I make a composite of the data. So, like, you introduced yourself 9 of 12 times. And then I write a qualitative description of each section of the interview, what the physician did well, and usually 2 or 3 concrete behaviors to work on. And get the report to the physician in a week or 2, and then we meet to discuss it. Some physicians schedule another coaching session. Others keep in touch through email, sometimes their chair or division chief. Insist that they come be coached. So here's what it looks like. Here's the first, the senior, our senior associate dean for clinical affairs. I coached him first, and he told me no one had watched him for 40 years in his practice. I was the first one. So it's never too late. Here I am observing him with patients who gave me permission, even encouragement, to show you. The picture with them in it. Here's another picture of me just watching and coding with my clipboard there. And then a post-session meeting where I'm talking about my initial impressions. So let me tell you the results of the initial pilot study. So for introduce yourself and your role, I found that 81% of the time our physician faculty introduced themselves. And when relevant described their role. But of course that means 19% of the time they didn't. And many of them said to me, "Yes, I did." And I said, "No, you didn't." Eventually they would believe me. And I think it's just more of a testament to the fact that we often aren't accurate reporters of our own behavior. By the way, in the pilot, non-surgeons and females introduced themselves 100% of the time to new patients. So I think you can see that it's the male surgeons who seem to have a problem in this area. Many physicians don't introduce themselves to family members, however, which can be a major mistake when it's clear that the family members are crucial to the decision-making, to carrying out a treatment plan, or are even implicated because of the results of a test. So let me talk a little bit about families here. Many health professionals view families as perhaps a nuisance or a necessary evil. Family members can ask a lot of questions, assume their loved one isn't going to be well taken care of by the medical system, or family members can just take up too much time. Or they may give you entirely different information than your patient gave you, and then what are you supposed to do with that? That being said, These are the people who likely have far more influence over the patient than any of us, who will deliberate with them over options, support them in their darkest of times, and celebrate with them in the best of times. So in routine medical care, avoiding them does the patient a disservice and reduces the power that can come from recognizing them as part of the team. And when it comes to genetics, obviously, often there are patients to. So it can be useful when scheduling the first appointment to ask who the patient might want to bring along for any consultation or pre- or post-test visit and problem-solve whether it makes sense to have a genetically related relative who might be implicated or a spouse or friend who isn't. Family systems theory offers an approach to understanding families, how they relate to each other and to the healthcare system. So family systems theory and the biopsychosocial approach to medicine have common roots. They both are descendants of general systems theory. These theories assume a complementarity between subsystems and adaptation between subsystems that are connected. So an example in the doctor-patient relationship would be the physician who decides his patient really should be tested for the colon cancer genetic mutation given her pedigree and her own disease history. He recommends it. She declines. He explains why it's important. She declines again. He explains again, this time somewhat louder and with more conviction. Now the patient vehemently declines. So, what's happening here? It starts to dawn on the physician that the more he pushes this patient, the more she digs in her heels to resist his suggestions. So the doctor and patient have become a complementary system. The implication of this is that the only way the patient may reconsider is if the physician takes an entirely different tact. So, at the first sign of resistance, systems theory would suggest he might say, "I want to make sure that you've considered every aspect of this decision as it's an important one. Let's start with considering why you might not want to have this done." test. And then rather than pushing her to have the test, ask her to list as many reasons— oops, sorry. Let's see. Okay. As many reasons as possible not to have the test. And then the physician might even add some if she didn't come up with everything. And then when they've done that, then the physician might ask, "Why might someone want to have this test?" And ask for reasons again. The important thing is that, especially with this kind of patient, the physician needs to be sure not to take a strong stance in favor of the test, as it's clear that'll result in a strong-willed patient resisting. And the physician can tell the patient he respects her need to think this through carefully, that he's her consultant and she's the decision maker. So understanding how to manage patient resistance is just one example of the usefulness of family systems theory. So turning to my observations of our genetic counselor and our geneticist, like some other physicians and health professionals that I observed, They worked as a team on 2 initial consults, and the geneticist gave feedback alone on 2 follow-up patients who were negative. The genetic counselor spent an average of 34 minutes— uh-oh, this isn't the right slide. Sorry. I want you to see it. Hmm. I think I'm going the wrong way. Hmm. Wow. Well, let me tell you about it and perhaps we'll come to this slide in a little bit. So the genetic counselor spent an average of 34 minutes with 2 patients and families who came for an initial consult, 32 minutes with one and 36 minutes with the other. And the geneticist spent spent an average of 12 minutes with these patients, 6 minutes with one and 17 with the other, and averaged 5.5 minutes in his follow-up consults. I was really impressed with the skill of both of these genetics professionals. The geneticist is well known for being both smart and kind, and I was impressed that our genetic counselor was calm, confident, and articulate, which can go a long way to a spheres. In terms of the behaviors targeted for the coaching approach, out of the 4 patients and families I observed, you can see our genetic counselor introduced herself and her role 100% of the time, just like the female physicians in our study. The geneticist introduced himself and his role 50% of the time. It's true that the genetic counselors name probably isn't known by patients. So there are reasons to identify yourself. But even for the geneticist, ideally we all introduce ourselves and our roles because it's polite and respectful. But also because what can seem obvious to us as health professionals can sometimes be confusing to patients. So for a comparison to trainees, here's a study from the Journal of Hospital Medicine on Johns Hopkins internal medicine interns. And they found these interns introduced themselves only 40% of the time and explained their role 37% of the time. So I think sometimes the usual interpersonal skills that we learn earlier in life can get lost when we're interacting in a healthcare environment. And I think, Paul, the most likely mistake based on ours and others' research is to assume patients know who we are and our role I want to mention that the other end of the spectrum can also be a problem, which is saying too much about ourselves. In a large qualitative study I did funded by National Cancer Center, a surprising number of oncologists and family physicians spoke about themselves personally, which we labeled self-disclosure. And when the study was published, I heard from many patients and from the many reporters who wrote about the study for their newspapers that they wanted their visit with their physician to be focused on them, the patient, and they felt uncomfortable with the physician's self-disclosures. On the other hand, patients do want their health professionals to ask them about something other than their health condition. So any questions about their work, their hobbies, their family help to build the relationship and a sense of caring that goes beyond a more sterile biomedical approach that doesn't put the patient in context. Another aspect of introducing your role is often commenting on other team members or the referring clinician. Some of the most common patient complaints at any hospital, at least in the U.S., are about health professionals talking negatively about each other to the patient. It makes patients really uncomfortable. And this was a major theme that came out in a different large qualitative study that I did funded by National Cancer Institute. Prior to that study, I didn't even think about this. But I have to say in watching our geneticists and genetic counselors, they were both great about making supportive comments to the patient and family about each other or about the referring physician. Another communication technique that can facilitate an interview and build the relationship is when apologizing to the patient when that's appropriate. There are a variety of frustrating things, at least in the US, that can occur prior to seeing a doctor that put an already anxious patient or family member in an irritated mood. When I observed our genetic counselor, One of the patients had gone to the hospital instead of to the physician's office and was quite annoyed. She likely ignored the information that was sent to her, but instead of mentioning that, our genetic counselor said, "I'm sorry about the mix-up." Another patient was irritated, saying she had to fill out background information 3 times, which shouldn't have happened given electronic health records, but our unflappable genetic counselor said, "I'm sorry to hear that." Returning to the pilot study, in terms of asking about patients' concerns, in the larger study, 72% of our physician encounters, they asked about patients— the patients about their concerns, which means 28% of the time they didn't. I was really impressed that most of our physicians were excellent at describing a patient's diagnosis and treatment plan in plain English. However, they didn't always ask what the patient or family was concerned about. Of note, physicians with higher patient satisfaction scores were 10.6 times more likely to ask about patient concerns. So that's a really easy way to improve patient satisfaction scores right off the bat. I was impressed with the physicians who could reflect back the patient's concerns and communicate that he or she was listening carefully. To make sure the patient was fully understood. And I think this process provides an opportunity for the patient to clarify and correct any misunderstanding. And certainly, truly listening to another person is one of life's most difficult skills. We bring our own associations, our personal experiences, as well as medical or psychological knowledge, genetic knowledge to any interview. So we're likely to be having another conversation within ourselves about the patient's history or similar patients, or what to ask next, rather than fully listening to the patient. Too often we don't listen to understand, rather we're preparing our reply. As in many things, Mark Twain had a relevant quip about listening. He said, "If we're supposed to talk more than we listen, we'd have two tongues and one ear." So, especially when asking about patient and family's concerns, it's important to be in full-on listening mode. In my observation of our genetics counselor, I was impressed how she was attuned to the patient, listening and normalizing what could be sensitive questions like, "Are mom and dad blood relatives?" "We ask everyone that question," she said. She asked about patient and family concerns in 2 of 4— sorry, in 1 of her 2 initial consults, so 50%. Similarly, the geneticist asked in half of his visits, in 2 of 4 times. So with both of them it only happened half the time. In the initial visit when the geneticist did ask about patient concerns, it was at the end of the visit. He said, "Did you save any questions for me?" It's always good to ask, but if you ask at the end, it opens up the possibility of staying much longer with the patient. Who brings up a concern that the physician hasn't yet addressed. So asking at the beginning allows one to weave the patient and family's concerns into whatever the genetic professional plans to convey. Because genetic consults tend to be targeted and shaped by the referring physician, it's easy for the genetic professional to make the referral question the centerpiece of the interview. But we all know that patients' concerns often don't match those of their physicians. Which is likely part of why patients don't always follow a physician's treatment plan. A physician wants to know medical information, such as whether a woman's family member's breast cancer history is related to a particular mutation, whereas the woman may want to know more about how she functions, like whether she should have another child given the breast cancer history. In these cases, the patient and genetic professional don't have a— shared mental model, a common framework, and so a satisfying exchange may not happen. We can be speaking different languages. So it takes time and training, but can be very rewarding to enter into the patient's narrative to understand his or her health beliefs, family relationships, values, goals, and how these relate to her desire for testing or treatment. I know what you're thinking. You're thinking that takes way too much time. But remember that at least the genetic counselor I watched averaged with her initial consults 34 minutes. So that's a lot of time to obtain information, especially if the family history was taken over the phone or by questionnaire. So it's all in how the time is used. Asking open-ended questions allows us to find out what's on the patient's mind before explaining what's on ours. For example, our geneticist asked a closed-ended question: "Did we keep you sleepless until you got these results?" This pulls for saying no, even if the patient is anxious. An open-ended way of asking would be: "How have you been since having your blood drawn for the test?" Another communication technique that's strongly associated with patient satisfaction But surprisingly uncommon is empathy. For example, in cancer care where oncologists deliver bad news, studies show they average an empathic comment of less than 1 per interview. The most common response by a physician to the patient expressing a negative feeling in our own studies— so a patient expressing fear or anger The most common response by a physician is to change the subject by asking a biomedical question. I don't know of a study of empathy when delivering bad news regarding a genetics test, but you all may know it. I do know that what I'm suggesting are interviewing techniques that I'm sure you learned in genetic counseling, that are taught in medical school, perhaps even our parents taught us this. But time pressures and a system that doesn't reinforce these behaviors can really result in a biomedical fixation in our interviews. So let me share an example from my practice. Lynn was a 33-year-old woman who came to medical family therapy with Greg, her 45-year-old boyfriend, referred by her geneticist. Lynn has a rare progressive genetic condition which resulted in blindness and difficulty with balance. She badly wanted to marry and have children. Greg was divorced, and he said he loved Lynn but only wanted to marry and have children if he could be assured they'd have better than even chances that Lynn would not pass along the genes from this disorder. The meaning of the illness to this couple was interwoven with their transition to marriage. So in an extreme example of monitoring behavior to cope, Lynn had $30,000 worth of genetic tests at genetic centers across the East Coast without any conclusive diagnosis. That's a heck of a lot of money. The couple and their physicians were focused on diagnosis and on a degree of certainty that wasn't available. The sheer expense was amazing. With each failed test, the strain on their relationship increased. By the time they were seen in medical family therapy, Lynn was literally begging Greg to adopt an optimistic viewpoint about their future. But Greg held firm based on his temperament, his preferred coping strategies, and his past failed marriage. He wanted more certainty this time around. The couple had lost their non-illness identity. They were overfocused on the genetic tests and not dealing with the reality of their relationship. In medical family therapy, collaboration with other health professionals is key. So on the phone, the geneticist and I shared our mutual frustration about how stuck this couple was. And we didn't have a specific plan that came out of our talk, but the couple came to therapy next time to see me and they were totally different. They said the geneticist had explained the risk using different language. And they now understood it was very unlikely that any test would provide the information they wanted. They found this both disappointing and relieving. The rest of the session involved exploring more about the relationship and the possibility of marriage while being more uncertain of the future than is typical with most couples planning a wedding. Over the next 3 sessions, Greg withdrew more and more. It became obvious he didn't want to marry. And this was only in part due to Lynn's genetic condition. Lynn was heartbroken but glad for the clarification as the deadlock seemed like it could have gone on endlessly. In a post-session phone call, the geneticist told me, "I listened to how you talk about the couple and the illness and realized I needed to express the risk to them in a different way." So the standard way of communicating genetic risk was leading this couple to think we'd eventually find an answer. So he found a way to more simply communicate, and that resulted in this couple— really, our collaboration helped us unhinge this couple from their problem and, in this case, from each other, too. So, back to the study. Check for understanding. As I mentioned earlier, research shows that patients remember and understand less than half generally speaking in medicine, of what clinicians explain to them right after they come out of a visit. Carolyn Clancy, who was director of the Agency for Healthcare Research and Quality, says that asking patients to recall and restate what they've been told is one of the top 11 safety practices on the strength of scientific evidence. It's associated with better glycemic control in diabetic patients and with better compliance with inhalers in asthmatic patients. We know that everyone benefits from clear communication, that it's very hard to identify which patients are at a risk of misunderstanding, and that testing reading levels or intelligence doesn't ensure understanding. So many factors, of course, influence whether patients understand, from lack of comprehension of medical facts, nervousness about being in the doctor's office, emotional reactivity to a diagnosis, and lack of focus or clear cognition because of an illness or medication. So we have a special responsibility, I think, to be certain that patients remember and understand what's important. By asking them to recall, explain, or demonstrate their treatment plan or their diagnosis. The nursing literature calls this teach-back. I prefer the more general term check for understanding. In our study, only 23% of physician encounters checked for understanding, which of course means 77% didn't. But Note that female physicians were 6 times more likely to do so. Check for understanding also discriminated between patients with high satisfaction scores and physicians whose patients had low satisfaction scores. So it seems to me we have a huge opportunity here in genetics to convey genetic information, often so complex, and true with after-visit summaries, often patients get things in writing, it's still not the same as being sure they understand. So, like other physicians I've coached, I was very impressed with our genetic professionals' attempts to explain the problem, often in simple common language, which, as you know, is very tough. However, I heard the following phrases and hypothesized that The majority of patients didn't understand them. All cancer is genetic, but spontaneous mutations are not hereditary. This test will not adjust your probability. Or, this test won't change your risk. You already have familial risk. This could be familial without being genetic. Families share more than their genes. They did not find any harmful mutations. You do have a variant of uncertain significance on MLH1. We don't know if it will be actionable in the future. This is a major Debbie Downer situation. Screening doesn't change your probability. And what's the point of screening if there's no treatment available? So these were things that one of our genetic professionals said while I was observing that I jotted down because I really wasn't sure that the patients were understanding. Building a shared understanding, a shared mental model, leads to the possibility of a shared approach. It means taking into account patient preferences based on family health history, individual and family meanings given to genetics and illness, religious convictions, since you mentioned that before, and cultural factors. It means understanding the person with the mutation and taking a biopsychosocial rather than a biotechnical approach. For example, take the last quote I mentioned, "What's the point of screening if there's no treatment available?" So this question assumes that rational thought drives decision-making, and yet we know that human beings are supremely irrational creatures much of the time. Some people do want to plan and see that as a highly rational choice, but remember how distressed Peter Rowley, who is our late geneticist, was in the early days studying testing for breast cancer mutations when more than one woman wanted her breasts and ovaries removed after testing negative. Of course, these women did have elevated familial risk, but their physicians felt the choice was an overreaction. So having a dialogue rather than a monologue and speaking with the patient in a respectful way about his or her preferences until one really understands is probably the most likely approach to eventually agree upon a treatment plan both parties support. Okay, I'm running out of time and I'm not quite done, so let me quickly move through here. So here are the results from check for understanding. 23% of our physicians did, and— but our genetic professionals— oops. Did not do this at all. So lots of times what people do to check for understanding is to ask the question, "Do you understand?" So I've probably watched, I don't know, hundreds, maybe even 1,000 doctor-patient encounters, many of which the doctor says, "Do you understand?" And I used to think I could predict whether somebody's nonverbals was telling me they understand. No. So there's a lot of research that shows you really can't predict. And do you understand is not a way that checks out in terms of actually predicting whether the person knows what you're talking about. So it requires actively checking for understanding. I suggest things— physicians are often worried this is going to sound arrogant or something. So, I say, "I want to be sure I explained everything clearly. Tell me what you understand about your testing results. Tell me what you're going to tell your family member about our visit today. What's your plan about taking your medications once you get home?" These slides just show that physicians don't want to do this program at all. They do not want me to observe them. I'm good at doing it anyway. So afterwards though, you would think they had a religious experience. They are so excited. The head of the cancer center made his faculty's raises dependent on whether they got coaching this year. That's how enthusiastic he was about it. So these are some comments that demonstrate that. And these are, some of the feedback that I've gotten more recently. But you can see most of them give the experience a 5 or very helpful. I do want to mention just quickly that requirements for a good coach are keen observational skills, the ability to write a good report, to elucidate clear strengths and suggestions for change, communicate with the health professional in an effective, supportive, productive way. Understanding how to educate and understand physicians and other health professionals and the demands of their job. And particularly, at least in my coaching program, I only take people that have some psychotherapy training, because it is sort of another form of psychotherapy, actually. So this slide just talks about how it's a system. That there's a healthcare team for genetic disorders and that hopefully all these people communicate with each other at some point in time. So here's my prescription. Introduce yourself and your role. Build the relationship. Ask the patient something that isn't health-related early in the interview. Ask about patient and family's concerns. Take care to listen. Actively check for understanding. Recognize, validate, and communicate with the healthcare team. And try to create a culture in which exemplary behavior and lapses in professionalism can be attended to because it happens with all of us. So, thanks so much.