Good morning everybody. I am Donna Prosser. I am the Chief Clinical Officer here at the Patient Safety Movement Foundation. Again, my apologies for us getting started late. This actually is part two of our Social Disparities webinar that we did back in June and at that time what we were focusing on was the effective COVID-19 on disparate populations very specifically in Chicago, Illinois. If you haven't seen that and you are and you'd like to go back and view that you can see that on our YouTube channel. I've got the long link here but you can access it easily through the webinar page on the Patient Safety Movement website. But just to reiterate what the key points were in this last webinar that we did we talked a lot about how structural racism has significantly impacted communities of color and looking at this list of inadequate poverty, poor nutrition, inadequate education, significantly lower life expectancies and a much much higher prevalence of comorbidities I'm sure that that's not surprising that this created the conditions for the severe level of illness and deaths from COVID that we saw in these populations early in the pandemic and still now. You know Pat, Mary Weather, one of our panelists brought up that the elderly are another disparate population often forgotten in nursing homes and rehabilitation centers and also disproportionately affected by COVID. We also spoke about the safety net hospitals that serve these communities who didn't receive much of the CARES Act funding and sustained some pretty significant financial losses because of COVID. The message last time that I heard loud and clear was that achieving health equity is going to be very hard work but it has to be done and we unfortunately had run out of time last time to talk much about what we need to do about this. This is not an easy solution so we have our panelists back today to talk about what we need to do to improve this. So our same panelists from last time are here joining us so we've got Dr. Ron Wyatt, Dr. Marcus Robinson, Dr. Daria Terrell and Pat Mary Weather and I'd love for I'm gonna stop sharing my screen and and for the remainder of this conversation we're just gonna have a panel discussion so I'd love for our panelists to introduce themselves and I'd like to start with Ron Wyatt. Dr. Wyatt tell us a little bit about your background. Yeah hi good morning everyone good to see you again and thank you Donna and Kaylee and patient safety movement. So about training I'm an internist practiced for about 25 years mostly in St. Louis and here in North Alabama where I am this morning grew up in the Alabama black belt small town born in Selma and I would say that the work of disparities has been a lifelong journey for me it's the reason I went into health care in the first place and that journey continues so thank you. I muted myself by it okay and Marcus please tell us a little bit about yourself. Hi I'm Marcus Robinson psychologist by training and I've been working in the community development field for over 30 years and I've been served on the boards of Spectrum Health Lakeland Health Unity out of Michigan Unity Health in New York and currently here in my neighborhood in Inglewood Chicago the patient advisory board at Sabrinoc hospital. Wonderful thank you so much for joining us again and Pat good morning tell us a bit about yourself. Good morning everyone and I'm Pam air weather Argus and I'm with project patient care prior to project patient care and it is an advocacy organization for patients families caregivers in bringing the voice of the patient and resident to the forefront but prior to the act I worked for the Illinois Hospital Association and also the quality improvement organization both organizations working on not only the equity issue but also across the continuum of care because that's oftentimes we focus on hospitals but as we know care has shifted to the community level to the outpatient level and I also serve on a number of hospital boards including one in Marcus's neighborhood in Inglewood at Sabrinoc hospital. Wonderful welcome again to everyone I know that Dr. Daria Terrell is working on getting on so Kaylee just if you just let us know when she's able to join and then we will hear from her as well. So let's go ahead and get started we have lots of questions for you all today and I'd love to start first with Ron Ron since our last webinar you had a personal experience that illustrated exactly what we're talking about here today and why this is so important. I'd love for you to share that story with us and some insights that you've learned. Sure and thanks for asking a question I'll add on some to some developments from that story as I go and I'll try to be as concise as possible about two and a half months ago my brother was diagnosed with a significant medical illness that will require radiation treatment chemotherapy and a bone marrow transplant after a couple days of not feeling well his wife who had had a ruptured cerebral aneurysm about two years ago this decided to take him to a hospital there in northern Virginia and he was admitted with septic shock and put in ICU. Now I'm gonna back up and tell you a bit about my brother who's a couple years older he is a lifelong public servant veteran of the Vietnam era he is a managing supervisor for a large federal government agency that I think most of us know and fear so but about him he is a consummate professional person impeccable in his dress down to the point that if he gets a nick on a pair of shoes he won't wear me anymore so I get these really nice shoes that he decides not to wear he sends his shirts and blue jeans even to get him starched so after a day in the ICU when he was on liver fed which people that don't know it was there to keep his blood pressure up apparently he had gone into acute renal failure I talked with the care team on two days back to back the conversations were mostly demeaning to me and the data that I was given was totally misleading so for example the hospitalist told me that his renal function had improved and I asked for his creatinine and it was actually higher than it was the day before so when I said well how could this be an improvement when it's worse than the day before and he went into an explanation of how that was better and finally you know he gave up on that and I said well that there's nothing about this is better the next day a nurse practitioner talk with me who I would say had better grasp of the data but still what I experienced was a disconnect between the medical interventions and the person that was in the bed with a very low blood pressure and acute renal failure who have been told that he would probably face temporary dialysis about three days later he was to me inexplicably transferred to a medical surgical unit I made sure that his wife knew that he needed to speak with pharmacy social services care coordination care management all of the things that he would need to know before he was discharged home now again this is a person who's never been in a hospital overnight as a patient in his life the next day he was discharged home when my sister-in-law picked him up from the hospital and understand the midst of COVID she could not visit him as an inpatient he was brought to the reception area to be picked up by her and wheelchair when she picked him up he broke down in tears she described him as quote-unquote filthy and this again a person who prided himself in his appearance during that hospitalization again nor he or the family met with any of the teams that I just described they did not do any type of home assessment they didn't know anything about her functional inabilities or that he had to climb both of them had to climb to flights of stairs he worked primarily at world level at home but his the bedroom was two flights of stairs up there was no inquire about what kind of home setting are you going into so about a week after I filed a concern complaint and grievance with a hospital I was able to speak to the head of hospital medicine and I went through this same story that that I shared with you but he started out with a statement that I think demonstrates what happened to my brother and what happened to him was that his dignity was taken he was not shown compassion he was not respected and back to your your point Donna this is this is hard work but this is hard work and he did not receive the hard work that and the hard work doesn't hard work doesn't substitute for hard work so when I when I talked with the hospitalist this is how he started the statement well you know when these folks come in and I said wait a second what do you mean by these folks and he said well you know what I mean you're internist I said no I don't but I know is you had a human being that happened to be my brother in septic shock and I went through this the same series of events so I said so we need to back up and we're not going to talk about any human being as as these folks whoever these folks are and and through the conversation he began after some of the defensiveness began to fade not all of it he said well I'm learning from this as I talk to you and you know he could have learned from my brother and my sister-in-law when he was there if they had met with them you know I spent the next week gone over what a renal diet was because they didn't go over renal diet for a person was facing temporary dialysis so so she was she took him home and was giving him the same foods that he had been taking before high potassium foods and a person who's in acute renal failure no one talked to her about diet when I talked to the hospitalist chief hospital medicine he even said to me well you know we have a dietitian but we don't have a nutritionist so I said well you know you're you're in a very large health care system one of the more large health care system in this country you gonna tell me that you have people in acute renal failure that don't have access to a nutritionist that he had a reaction to a biologic and no one discussed with him the dosage or what that biologic was doing to him none of that took place he never met with the pharmacist or a care team so I'm gonna pause there because I think in many ways it does demonstrate the disparity or as WEB dwells talked about this passive indifference to people and it doesn't matter in his case he has he has not one but two master's degrees you know a professional person so that doesn't matter and the data says for for black indigenous and people of color it doesn't matter what your your educational background is it doesn't matter what your income is there's something different about that those interactions that impact care what my what my brother said and I shared this with the hospitalist is when he left and tears his wife said I might as well be dead because the way he was treated when he was in the hospital and and again this is something I know directly about because it's my brother and I experienced it but this happens every day and this happened every day for decades and generations and we're to this inflection point where we what we talk about today we've got to say we have to stop this we have to do hard work we have to respect people we have to show compassion we have to be empathetic we cannot rip a person's dignity from them because then they they're left feeling with this internalized idea that I might as well be dead so I'll stop there wow Ron thank you so much for sharing that very powerful story and you know sets the tone for exactly why we're having this conversation today so thank you very much we we have been able to get Dr. Daria Terrell on with us on the panel so good morning Daria so so sorry for the the the technical difficulties we're still getting texts that zoom is having all kinds of issues so my apologies there no if you yeah if you would would you introduce yourself for for the audience please good morning everyone sorry for the delay and joining you as Donna said tech issues got the best of me this morning but I am Dr. Daria Brooks Terrell I'm an orthopedic surgeon and I am the medical director of clinical programming and health outcomes at St. Bernard Hospital which is a safety net hospital in Chicago Illinois and I'm very happy to be here in a part of this discussion this very important discussion this morning thanks for joining us well my first question is on Ron in our last webinar we ended the webinar where you spoke about the three things that we have to do to achieve health equity rectifying historical injustices valuing everyone equally and reallocating resources based upon need could you just briefly review those and and where you think that we we need to so I'm gonna say first and foremost if I look at those three all are critical the most important one is we have to value people that's most important doesn't matter how old you are where you live your education your skin color we have to value people that black indigenous and people of color populations LBGTQ populations that elderly this the disabled have been devalued and in some cases have been dehumanized and as the example I gave then people become and they internalize this devaluation of them as a person and then we have this way of feeling comfortable by ourselves by saying well that person was non-adherent or they were non-compliant or they were combative or they were difficult or even the family doesn't care why should I that's that's the realness that goes on so we have to learn that every human being has innate value and if we can start there and see the humanity in the people that come to us seeking to trust us and that gets into the historical injustice there has been so much trust in black indigenous and people color population that have been taken away and and in health care I think we gotta understand a part of racial healing is we're gonna have to go back through some pain and wounds have to be cleaned out and sanitized and and allow to heal an environment where healing is the top priority so so that trust started I'm gonna say in 1619 or before so so so pandemics for for our populations started then the disparity started then the disparity started on slave ships and on plantations it started when when a black slave that ran away was labeled a dreptomaniac because you had to be crazy to try to run away from being a slave it started with Marion Sims who who was the father of gynecology that operated on black women some of whom he owned without anesthesia and became the father of modern gynecology we can talk about the birth control contraceptive experiments that happened in Puerto Rico with with almost no informed consent we all know the story of Henry the lax and the healer sales here in Alabama why am the Tuskegee syphilis experiments all of these things begin to line up for people to say why should I trust you and as we move through a pandemic and the urgency of a vaccine that's a question that we need to start answering why are these populations gonna trust a vaccine when I don't even trust you to treat a sinus infection so so we got to understand that it's historical injustice and restore it to people the next and a very difficult part of this is we have to take resources that we have that there's not many new resources it's almost a zero-sum game but if but leadership at the executive board level you got to say we're gonna look at our resources and we're gonna reallocate resources and that's scary for people because they hear redistribution of wealth well you know yes we're gonna have to redistribute wealth and we need to redistribute resources where they are most needed not where they're most wanted or where they are most needed and this is for both nonprofit or for systems for profit systems government federal health care systems leadership has got to say we have to put the resources where they're needed there's no excuse for eight zip codes in New York City to not have no PPE in rich health care systems there's no excuse that decisions have to be made about who gets put on a ventilator that nurses and health care providers have to wear trash bags to protect themselves in systems that have millions of dollars in resources that they distribute in an unequal way so we need to understand who our populations are that are truly at risk and decide where those resources need to go understand who the people even that work for us that that have to catch a train and a bus or walk or ride a bike that that are making less than a living wage in our health care systems and take care of them that's a leadership commitment that is the hard work so we have to value people as human beings we got to understand the historical injustices that that existed and frankly still exist and then we got to make a commitment that we're going to put the resources where they are most needed and don't apologize for these are human beings and we're in a in a life-saving industry and I would say bluntly to people that don't get this you're doing more harm than good find something else to do for a living because you're only hurting people and that's not what we're going to do from this point forward we must not do it we must commit to these three areas invest in them incentivize them and pay attention to them so I'll pause there because I get carried away with it so I love your passion Ron thank you thank you so much well my next question is for Marcus you know Ron articulated very well what hospitals and health care systems need to focus on you know from a leadership standpoint but you know we also know that in those in those organizations there's a culture that's made up of individuals and folks from the community what can the average person do the average individual and the communities do to help support hospitals in this endeavor well I think first of all thank you Ron for sharing your personal story and and given context for this this conversation and and the passion that you bring to the very important ideas you just shared about the path forward for us and Donna thanks for such a wonderful complex question you're welcome I knew you can handle it thank you so so I'm gonna I'm gonna start at the macro and see if I can't get down to something that makes some sense so ultimately we just simply have to come to a group the fact that oppressions drive the disparities and social determinants are all man-made they're within our full control to address you know we can deal with these underlying issues that that Ron is pointing out and and for the one we also need to understand that we are all complicit in that system that Ron is pointing out that would have that kind of outcome happen for that would rob the dignity of a human from a human being in that way and that we all live at the effect of that system that oppression and nobody gets a buy you know black brown blue white yellow doesn't matter who you are we're all negatively affected by it so we all have to do our own work to help rectify these injustices and the work breaks down for me in three stages really some sort of first stage I heard Ron kind of allude to it we simply have to tell the truth to ourselves about the way things are and the way they have been so that we can see the evidences of the disparities and other underlying drivers of these disparities so that we've got evidence with which data with which to get some real work done and so so the truth-telling piece of it was super important so that we could understand how these oppressions racism sexism genderism you name it is out there and this all you know having an impact on us and once we find so you have your own homework on that regard then there's the reconciliation piece I think Ron spoke a little bit to this too there's some making right that has to get done and right now that means that might mean reprioritizing our how we use dollars in health care writ large and then expanding the health care team getting out of our silos kind of thing you know hospitals are in a silo public health people are in a silo unaffiliated practitioners are in their own you know little foxholes kind of thing we all have to you know kind of do our own work and so reconciliation is a big piece of that work and and we have to repair the breach and keep in mind that this is a cultural journey this is a journey towards cultural understanding and belonging it's not a destination or a time point so it's you don't without the worry about trying to get someplace by a certain period of time we just have to get on the way of speaking truth about the issues gathering the data and then making the reconciliations and the repatriations and the repayments and whatever we have to do to reorganize in order to get this thing done in your wherever you're at because everybody's in a different lane you know so not everybody can do the top-level work but there is work we could do at the level of of an intake at the at the level of I'm coming to check your vitals this hour I could do more of this if we check off the numbers I can actually have a human interaction with you that says I see you I value you and I'm on this healing journey with you so that folks can you know you know recover themselves in that way and it's only when we do the truth-telling and reconciliation that we can get on to healing and I'm gonna use healing at the most broad sense of the word I'm gonna use trauma in a broad sense of the word because the oppressions that Rod is speaking to are traumas and then when he talks about the historical patterns of how these things have come from 1690 right through the 1800s right into the day these these become epigenetic traumas that we actually experience in our bodies to experience in it as much as I have skin color I have encoded trauma of my ancestors as well and it's genealogical because it means that you know this this stuff comes down we all get told how to do this the kid at kindergarten is getting the same getting white kids black kids brown kids white people black people brown people business people we all get the same lessons about oppression we're told where our place is in the thing and these are like family known family traditions regional customs cultural norms they even have legal components I mean there are laws that need to be addressed administrative rules that need to be reviewed organizational policies that need to be examined and changed and we have to develop professionally developed so leader preference as as as Ron was pointing out leaders in charge of large institutions change themselves so that they could be the vanguard and and the standard bearer for the change that needs to happen in the in the organizations so just remember the three big things I've kind of point out here and that is truth reconciliation and healing is the pathway to get into where Ron wants to be where we can all value each and every human being that comes into our presence no matter who they are from what's they come or whether they have money or not full stop very well said I really yeah truth reconciliation and healing I'm writing that down for our notes for that thank you and Daria the last time that we when we joined together you talked about your safety net hospital and the strut the financial struggles that safety net hospitals who serve communities of color are facing generally in general but specifically in this COVID situation how did those hospitals who are already struggling how did they improve access to resources for for our desperate pop so thank you for the question Donna again a little complex you know by nature the fact that safety net hospitals strive to deliver care to those who are challenged by low income and lack of insurance sort of makes us almost at a disadvantage in trying to render care but despite those challenges there I think there are ways both on large scale and smaller scales that we can still try to provide the health care resources that patients need the first thing that I will say is and it's almost non-medical but I feel like the less financial resources you have as an institution the more you have to use your voice and the more almost politically active you have to be so I say that meaning that our hospital leaders have to continue to be vocal about resources and the needs and why we need those resources you know the the whole discussion of COVID brought out a lot of talk about disparity so when we if you think about the fact that in some instances we're starting with sometimes sicker patients it would seem almost intuitive that we should have these resources but that's not always the case so being vocal on is one one answer the next thing I would say is as institutions we have to be able to meet people where they are so the challenges of COVID-19 have made certain barriers to access and so we have to be equipped to transition to telephonic medicine and try to encourage our patients to come along in that journey with us some go a little bit more readily than others but also in that we have to also realize that everyone may not have internet access and so just being able to render care as to the best of your ability within certain circumstances being able to have a telephone conversation if that's what it takes to at least establish some kind of contact and prevent things from just going haywire or really getting out of out of control until they can be in person also you know messaging is very important I think at this time so I I'm a big advocate of people using social media responsibly almost all institutions now have Facebook pages some have Instagram LinkedIn etc so using those platforms which speak to a lot of people now dinosaurs like me have to accept that you have to get on the social media bandwagon or you'll you'll kind of be you'd be dragging behind but we can use those tools to help us communicate with patients so I think one of the big things that we need to do right now is let our patients know that it's okay to come back to the doctor let us let them know that we're available for them let them know that this is the time that you want to maintain your follow-up visits you want to maintain your screening for things like diabetes for colon cancer for breast cancer those things that we put on hold in the midst of our crises we can't we can't lose sight of those now because then we might be putting ourselves at risk I want to share a really really quick story that exemplifies this I during the heart of all of this I want to say back in April I got a call from the emergency room for a woman who had come in she had had a small wound February January February got worse was referred to a consultant which by the time she got the appointment we were in the heart of the COVID and that camp that appointment was canceled so she stayed at home the leg got worse more pain wound got worse so this poor woman decided not to eat because she thought if she didn't eat she wouldn't have to get up to go to the bathroom so then she wouldn't incur more pressure on her leg and that and she stayed at home in that state not eating not drinking for days until things just couldn't go anymore so by the time she actually presented to the emergency room she had a leg that needed to be amputated and she was maybe 80 pounds so I share that story because on one hand we want to sometimes we we're right now we're so focused on trying to keep ourselves safe from COVID that we are not doing what we need to do in terms of keeping ourselves safe the other thing I would say they're even small things so for example in our institution where patients can't get to the hospital or to the medical center for more complex care such as surgeries or diagnostic testing we're doing what we can to help them with those transportation needs also the CDC has talked about the importance of getting flu shots this year more than ever because we all want to avoid the synergistic phenomenon of the flu and COVID so we're doing things to make getting flu shots and pneumonia vaccines more accessible to our patients and our patients in particular some of whom are still dealing with the devastation of looting and their local pharmacies that they've come to depend on still haven't reopened from some of the civil unrest and looting and lastly I would say one of the more powerful things that I think we as institutions can do is celebrate engage and educate August's civil health month and for those of you who don't know and as providers we're encouraging our patients to register to vote one way or the other your health care is dependent on the political regime no matter which side of the aisle and which philosophy you partake in health care is a part of what happens in politics and so we are actually encouraging and also trying to help our patients register to vote sometimes just in discussions as they occur in history taking sometimes we're doing it as a part of our social history and then we are actively assisting patients we've had in-person groups come in to help patients register to vote while they're waiting for their appointments or while they're waiting to be registered I'm a little technologically challenged so I'll put this up just as a demonstration this is an organization vote ER but I'm putting it up just for the symbolism so that you can see this is a wonderful organization that was started by Dr. Alistair Williams and Mass at Mass General and basically it provides a QR code that patients can just scan and that shoots them directly to a mechanism where they can register to vote you we have to vote like our health depends on it because it does and I'll leave it at that wow I had no idea that that it was civil health month in this month so thank you so much we will be sure to share that on our social media as well thank you Pat a question for you we have several patient advocates that are on in our network and also on the line today I wonder if you can share with us what can patient advocates do to help improve health care equity I think that's a great issue and I really have to applaud the prior speakers for their informative discussion as well as their powerful messages so so thank you in terms of patient advocates I'd like to propose something a little bit different is we all need to be patient advocates if we're if we're in a setting or we need to have caregivers that are our advocates so so again patient advocates doesn't mean just a formal organization it's everyone can be an advocate for themselves and oftentimes they need to be and certainly that's where caregivers also are of great assistance and then there's the formal ones that sometimes can work on behalf of patients and they're the sometimes now for-profit organizations or for-profit organizations where you have to pay a fee to to get some advocacy and then there's the focus area ones whether it's disease-based or location-based there are many different organizations out there and I just want to talk about two streams because if you're in immediate jeopardy what we call immediate jeopardy or immediate harm you take different actions than you will for something that may be longer term and when I say immediate that means that you're in the hospital or you're in the nursing home or you have a loved one and they need some change to occur well first you want to try and speak to the caregivers have somebody speak to the caregivers see if you can change their mind if not you want to go to the hospital patient representative or you want to go in a nursing home to the ombudsman which is located outside of that nursing home and is supposed to work on behalf of the resident and then if you don't get anywhere there if you're a Medicare beneficiary you can contact the the BFCC the beneficiary and family-centered care quality improvement organization and they actually respond they respond well and they will advocate for you whether it's hospital or nursing home or outside of those settings as well and then you can also contact public health but oftentimes you may get not immediate assistance depending upon the state you're in they all work function differently and then the other option is if you're not getting satisfaction along those ways take to social media because it really does have an impact so those are for the immediate issues and I'll tell you right now during this COVID-19 time people are taking to media they are trying to find solutions because again care in some settings is not the best and if we hit disparities before they're only being accentuated by by what's going on right now with COVID-19 so again the disparities are just widening they're not closing they're in they're in full blown view of everyone for a longer term approach I would say you know you can get involved with the patient family advisory council within a hospital setting that's an opportunity to voice your issues and concerns you can also get involved in a nursing home resident council or family council and everyone has to have a resident or resident family council now sometimes they're not open you know in terms of their discussions but some are so again you have to at least try that route community leaders people in the community you know if there's disparities occurring and you're being treated in justly then you need to also look at are there community organizations that are also rallying behind that issue and we see that in Chicago oftentimes you can also join with some of the organizations that are out there whether it's a disease-based or even the patient safety movement foundation there's many organizations the other thing is approach elected officials and sometimes it's not so much the official you can write a letter there it may be their staff and raise the issues because elected officials and their staff actually do respond and you have to be very you know share your story and be willing to share it otherwise the other route is journalists I just picked up an article somebody sent it to me and it's the most insightful article on what went on at the Kirkland nursing home and and the harm and from a resident perspective a caregiver perspective clinician perspective just the the chaos that was going on and how people were calling out for help and then of course you know it's you can go to your state public health but right now they seem to be overwhelmed with everything going on so again I would try the other avenues first and but the idea is not just to let it occur but to be proactive and know it's okay I think we all as I hate the word patience because it implies you're supposed to be patient not do anything we'll take care of you you don't have to voice your concerns and we need to change that around so they have people all feel they have a voice and they should have their voice respected and we have to address the health and equity issues because they are really driving up the cost of care because we're not providing the proper care at the beginning so with that again I hope I encouraged everyone to be a patient or caregiver advocate because that's the only way and not give up when you the door closes on you but just find another door to go through thank you wow yes very well said that we are we all do have to be our own patient advocate and I great suggestions for all of us thank you so much Ron question actually from the audience for you someone who commented that they were very sorry to hear about your brother's experience and but curious to know about the social history assessment that was done when he was admitted to the hospital you know very often that's the one and only time that we gather the kind of information that you were saying that people didn't know about your brother can you just talk about about that process and what what happens with your brother there and what can organizations do better in their social assessments sure so and I thank you for the question and I alluded to that a bit there was very little known about him as a person that inquiry wasn't made and I think what's really important in healthcare whether it's inpatient or outpatient whether it's face-to-face or or telemedicine that it is a person who has a life has a family and is a part of this society so that there was little or no evidence that any of that took place person comes into an ICU with septic shock and they get IV fluids and leave a fed and all those things but there's a person there so no those aspects about his his social background and that's why I brought some of that in the kind of person that he is uh is important and that's for for anyone who comes into healthcare and is looking for empathy and looking to trust what's about to happen to them I think a big part of what healthcare can can do is not it's just not complicated calculus and you know I go to Dr. Venable who was just this wonderful person that I met years ago when I was leaving training in St. Louis Dr. Venable was over 90 years old and still practice medicine in St. Louis and he gave me a few lessons about this I still think applied to all of us whether you're physician nurse or advocate whoever it is he said when a person comes to see you keep your mouth shut and listen and they're going to tell you who they are they're going to tell you what's important to them they're going to tell you what matters to them and he said over nine percent of time they're going to tell you what's wrong with them and then all you need to do is come up with some of those big medical words that you learned in medical school and repeat them back and he said first they're going to thank you the smartest doctor ever met so they're going to go tell the whole community you know that's a smart doctor he knew exactly what was wrong with me but it came down to just humility and somewhere we've lost humility in health care delivery in patient outpatient again I go back you got to have humility on a telemedicine visit so we have to practice humility structural humility culture humility listen listen to people ask questions ask their permission to enter into their lives tell me about your life and this is not something new for me even when I was in academic medicine teaching medical students when they want to say well this is a 58 year old black female yada yada yada I abolished using 58 year old black female over 20 years ago I would say to medical student resident tell me about the person in the room and it was one in some case it was a simple question give me three things that are sitting on their nightstand in that hospital room tell me that there's some sign of life is are there paintings from grandkids or family members or friends are there flowers what is in that room that tells you this is a person in front of you that has a life outside of these four walls and if there is nothing if there are no flowers if there are no signs if there is no get well soon grandma that's still telling you something that there's something there that you need to understand this person may be lacking social support what what is going on in the other dynamic that we need to know about so you know I just say empathy love compassion respect humility you know and I always use the term from Chen Waqibi who wrote things fall apart and and I paraphrase it you can't come to into my house through your gate you have to come through my gate I need to tell you about my gate and my yard and my house and what it means to me and then I'll give you permission and we can sit at my table and we can have a conversation and we can get to know each other and we can co-produce your health care and you can own it take away this paternalistic approach that that hit me in the face with my brother when that physician said you know these folk come in he's already made a decision about people whatever that meant so that's we got a back away from that and enter to a different kind of partnership where where people take control of of their health care people understand the resource available is their patient family advisory council you know I have the right to ask for pharmacists to to to talk to me about my medications inpatient outpatient about my diet about me get to know me and then we can get healthier together and and and that's I think the things that we need to go to before we can get to then clinical decisions and the bias and violent clinical decisions and you know we can talk about that if we have time but those are the basics of it that we need to we need to understand and get back to and admit that in large part inpatient outpatient um we have lost if we ever had it so we need to focus on regaining what's been lost absolutely well and and it sounds like it sounds like what you're suggesting is that we go back to the way we used to think about assessments before they became checkboxes and an ahr so um and thank you so much for reminding us that humility and health care is is a key in order for us to understand others um Marcus I wonder if you could um and and and I just wanted to note to everyone we are about six minutes away from the hour but because we did get started late um if if anybody has to jump off I completely understand but if if we could kind of go until 10 after the hour to get everybody the full one hour of contact hour credit that we that we are offering today that would be fabulous um Marcus um can you you know both Pat and Daria talked about the importance of getting involved talking with politicians voting um and and and such what what how do we incentivize local governments to uh to better improve health care access again with those modestly beautiful complex questions oh thank you so much Donna you must think a lot of me I'll take I'll take that as a as a as I'll take that absolutely I do okay so so so it was so I'm gonna follow uh Ron's uh uh I'm gonna follow everybody because they're sleeping with souls the size of in their answers so I'm just to get right to it in Western society specifically the United States of America no matter what town you're in is incentive it's all about the money it's all about the money and here's where I come at that oppression costs way too much with little or no actual ROI for the oppression I mean it's just not a good deal uh there is a business case for resolving these oppressions of racism sexism classism other isms however you define them there is a business case for solving that uh when when communities and government lower the overall uh cost of effective efficient governance we all win financially you know we all win by paying less tax lower issuance premiums better outcomes oh my goodness what could be better than that you know uh so solving the oppression riddle that drives disparity actually reduces taxes increases societal uh uh level engagement productivity you know if we're healthier we perform better and so we could earn more I mean it's it's uh it's in a balanced scorecard kind of way uh we could do a lot better job for ourselves and that's the rule incentive so getting smarter about the economic equations that drive what I would call human capital value add so like it's not just so that human being has a life and has family and people or no life from family and people there is a capacity for economic value add sitting right there there is a human capital ROI that can be established for non-profit and for-profit agencies organizations that that will drive their efforts to reduce the impact of their touch on the oppression will so figure oppression is like a huge societal boulder that all of us have our hands on and we're all pushing it one way or the other if we could just get one hand off the boulder that means it pushes a little little you know it rolls over fewer people we can get both hands off it might even stop kind of thing so getting smart about these uh uh occasions uh can be a bit about about the human piece of it the money piece of it will lead to better outcomes across the board in the human endeavor so here's a here's a quick story about this so when I first came to Chicago six years ago I decided I was going to come be a part of the the solution around the gun violence inside did my own little research on that thing my little back of the napkin calculation and what does this thing cost the Illinois Cook County city of Chicago and all told that the way I rolled it up it was about three three and a half billion dollars a year for gun violence alone three and a half billion dollars a year now if you and I got together with all of my institutions and all of the you know all of our partners and and uh and you know the public health departments and all of their partners in housing economic development all these other things that drive at the underlying stressors that are that are the source of the uh the disparities and if we and if we only did a what I would call excuse my name a half-ass job that means it would go down by 50 percent right well what is a 50 percent reduction in that well that's a 1.5 billion dollar savings year on year for a Cook County for city of Chicago and uh the state of Michigan I'm sorry state of Illinois and guess what if if those were sustainable uh cost savings with responsible leadership that would be passed on as lower tax burden to you and me it's all about the money and if we could see the business case for eradicating racism the business case for eradicating genderism the you know for sexism we all be wealthier and healthier because we did full stop thank you Marcus I knew you were the right person to ask that question of as complex as it was that's a perfect answer thank you um um Daria I there's we got about 10 minutes left I have about three more questions I'd like to get to so um so I'll ask you another complex question but ask you if you could keep it brief for me you know kind of playing on what what Marcus just said we we really need data to be able to establish a business case for this so what role uh what role um it does data play in health care organizations and how can they better use the data that they have to address disparity so I'm going to try to keep this brief but I'd like to answer your question about using data uh with one of my favorite quotes um that I don't think people apply to health care but Dr Martin Luther King said nothing in the world is more dangerous than sincere ignorance and conscientious stupidity and I that is my driving force and how I practice medicine how I interpret that is as a as a clinician if we don't understand that or we we're not aware of the increased incidences of maternal mortality in Chicago for example that Chicago actually has the highest rate of of deaths related to uh childbirth if I don't understand the side effects that certain african-american patients have with certain anti-hypertensive drugs that's sincere ignorance if I don't understand that racial and ethnic minority females are more likely than white women to present with uh breast cancer at later stages that's sincere ignorance if I have the data I have to have the data first and I have to I have to familiarize myself with it and once we have the data and all these discussions of COVID has brought out you know all these discussions about health disparities and how people of color are affected now if we don't use the data correctly that's the conscientious stupidity if uh Ron gave us examples uh countless examples so I won't I won't I won't dwell on that but if we if we don't look at our diabetic patients for example and we chastise them why aren't you why aren't you uh checking your sugars but we're not paying attention to the fact that they were sent lancids but their insurance companies have not given them a glucose meter or they've called five times trying to get a glucose meter or if I'm talking to them about their diet and why aren't you eating a healthy diet but I don't appreciate that they have food insecurity then that's conscientious stupidity I'm practicing medicine without as Ron told us thinking about them as a person so what I would I would recommend or how I see this uh we have to do some basic things I'm not going to go into how we need to listen to our patients because I think Ron has driven that point home that's like the assist from magic johnson and now that you know we've got the slam dunk I would say we have to as entities we need to use social workers and community health workers to help us gauge what patients need things and and and use those individuals to help us try to link them to the resources that we need we have to look at this uh healthcare disparities within the context of social determinants of health so we as an institution need to play a part in trying to solve burdens of food insecurity we're when we do contact tracing we're asking patients okay we told you to shelter in place do you have meals and so if we if they don't have meals we partnered with some local community partners in the food depository to bring them meals so that they can safely eat and shelter in place we need to look at health literacy I think that's a huge huge vacuum and where a lot more attention is needed because if we expect patients to be partners we also have to be partners in helping them navigate the medical system we need to have robust comprehensive programming that includes looking at social disparities and things that have been identified including mental health and lastly I would say we need to again listen to the community listen to our patients we we conduct community needs assessments here at our hospital every three years and we look at that data and use that data along with all that we know about specific comorbidities to gauge programming to to help guide us to know which programs do we need to implement comprehensive diabetes do we need to implement ice screening do we need to implement std programming so we use the community needs assessment as well as the data from entities such as the cdc and and other medical entities to help guide our programming if we don't use the data we're practicing dangerous medicine in my opinion as Dr. King warmed us against doing wow this has been such a fabulous fabulous panel discussion I do I do have a quick question for pat you know Daria mentioned the importance of health literacy you know we also have language barriers in our communities what can be done to improve this so that so that hospitals can do a better job first of all there's a study that came out from cms and asked the health care providers how many of their patients have difficulty with language or literacy and they said 60 of all the patients so again we're talking about almost everyone has it as a barrier when it comes to language health care providers are required to provide a language line if the patient expresses and they have to ask the question what is your preferred language because many people are bilingual but they tend to prefer one language over another so they have to ask that question and then second they have to provide them with access to if it's a different language than what the provider speaks they have to provide that service either within the if it's in a hospital or a nursing home or they've got to use the language line because again that that has to be offered they have to be it's a requirements it and if they don't you can always contact within each region around the united states there's the department of health and human services office of civil rights and you can file a complaint and they do follow up this is a very serious violation by a provider so that's language now you come to health literacy and and it's not just literacy it's health literacy and that's where many people don't understand their condition or it's not explained to them and and that's where the opportunities to improve care occur is when you when a patient is asked if they understand this and not in a threatening way or a demeaning way because we've got to get away from the demeaning of patients and ask them if they understand and and also is Ron was saying listen to the patients I always you know we hear about teach back having the patients say what they thought they heard were the instructions for care but it's also I call it bi-directional are we listening to the patient really listening to them and and just to give you an idea health literacy changes and I have a I have a very close friend that is a well-known physician top of the line international researcher and lecturer and he for kidney disease but he now has a new disease he's got a esophageal cancer and he knew nothing about it and so he's had to listen to the others and learn from them and he even though he was an expert in his field he did not understand his his needs as well as the treatment and options that he has available so we all even if you're the most prolific you know a physician around you need assistance in understanding your condition and it's it's very common when somebody has a chronic disease their disease may progress and so their needs for more information different information occurs but we always need to be asking at the beginning of a session do you understand do you it's called the confidence tool do you understand your condition are we explaining it so that you can understand it and then at the end asking those same questions because the conversation may have changed and again it's it's a way of really doing fast track improvement is just by listening to the patient and asking them questions in a non-threatening way making them feel comfortable that they can say I really don't understand so so health literacy goes a long way in improving outcomes keeping the patient safe because they understand their their course of treatment and then language is just essential to care I mean there's no other way around it's essential care absolutely thank you Ron last question is to you I wonder if you could wrap up this session by addressing a question that somebody had from the audience about how to define disparities in patient safety and and commented that this is the first time this person who works in patient safety has heard this term so I wonder if you could end the session just by commenting on that and your thoughts about what patient safety professionals need to know and and and how do we help it help people for this not to be their first time hearing it yeah so so you know I summarize patient safety as no one should be hurt or harmed in the process of receiving health and health care that's what patient safety is so if we just go to the to the inpatient side of it then that means we have to look at things like hospital acquired pressure ulcer falls with injury surgical site infections we have to look at things like readmission race and why people readmitted so on the hospital side you can begin to look at those and that's the data part of it because all of those are harms on the outpatient side of it that the whole access issue but it's more than access is what happens once I gain access at the at the reception desk if I don't speak English as the first language is there a person there that speaks my language that's a patient safety issue right because what we found when I was at the general commission and still at the state is one of the biggest root causes of failure is failures in communication so so if you are working in a community where you know that the the first language of most of the people in that community is not English but if when they walk in no one speaks that language that's a major patient safety failure when that person's calls in for an appointment likewise that's a major patient safety failure when a person sits in front of a clinician or decisions are being made is the is the clinician listening or they spend most of the time in front of the computer typing in some words that's that's where failures and communication and clinical decisions are made that hurt people so it's inpatient and outpatient so look what but look what the data is telling you is your race and ethnicity and language data accurate valid robust measurable and actionable when you look at the outcomes of what your care are you measuring them do you know that for every person that comes in that evidence-based best practice is being implemented and and and you can measure that and so look at those things are you incentivizing reductions in in harm are you looking at and I think probably top patient safety issue and inpatient outpatient settings are medication errors so so look at the medication error rate these are valid numbers and they'll tell you something about where those errors are being made and you dig underneath that to say how can we make our system safer just around medication error so those are just some examples but I'll sum it up again by saying no one should be hurt and that's preventable in the process of receiving health and health care that is patient safety that is zero harm there's no substitute for it there's no compromise about it there's no negotiating it and I think at every level of health care we have to say to people that that aim the goal is zero harm wow absolutely thank you so much Ron Marcus Pat Daria this has been a phenomenal discussion we've got lots of comments from the audience about about how much they really appreciate everything that you've spoken about today this is of course being recorded as are all of our our sessions and we are providing continuing education credit for physicians nurses and pharmacists so there we also have a question from the audience about contact information to our panelists if oh perfect excellent so Ron has already answered that question if anybody else has a has contact information to share if you would share it in the chat so that folks can reach out and ask questions then that is wonderful well this again this is part two but definitely not the end of this conversation I am sure so I appreciate your time and you all so very much and I hope you have a wonderful rest of your day


I mean, it's mad when you think about we were just some chances who started a radio show We'd all come out of the student movement. I actually Didn't like Aaron We had protested Against tuition fees. We'd occupied universities. We had if you remember we have been charged down by police on horseback in that freezing square and We lost but a lot of us knew I think That there was this huge gap between the status quo and The future, but I think we probably both agreed on was that we weren't Represented much by mainstream media or really by any political power and and that it was time for us to transform it ourselves Right and and that this was the time to have those big ideas and be talking about those big ideas And they should come from us from all of us I think if there's a moment when Navarra became Navarra It was in 2015 when we interviewed Jeremy Corbyn in the leadership election and it was the day that his odds were Cut he became the favorite and there was almost a moment before that interview where I sat down and I thought Wow, this guy could be the Labour leader and that meant that that brand of politics was very relevant But also that our suspicions were right and that actually Navarra media was in the cusp of something very very very important We're at a political tipping point, right? All the old assumptions are falling away another world is coming and The question is what's it gonna look like near liberalism is dying in it and Navarra media started what five years ago But it's really in the last two years. We've started making a real difference. Yeah I mean the the sky is the limit and You know so far we've been doing it all on a shoestring. I mean, I think people don't know but all our contributors are paid but The overwhelming majority of the core team are purely volunteers and that has to change And that's why we're asking you to donate just one hour's worth of your monthly wage and We will keep working round the clock to build a new media for a different


I feel now, even when it was founded, it had a different challenge. At that time, whatever it was, as Dr Chandler has put it, it was a challenge in applied science. Applied science and solved the problem and particularly applied science. But now as 30, 40 years have gone and we are coming to the 50th in the fifth decade, the national programs have become stronger. The challenges of the rice cultivation, the rice farmers, rice consumers, the whole rice community in the world have also become more and more complicated and complex. So under these circumstances, certainly our challenge is to use this real science or the, you can say, basic or strategic research. But the challenge is that we should not be going deep in strategic research and ignoring the fact that we have to solve a practical problem. Whatever strategic or basic research is needed, according to Institute's capability or resources, should be done either here or in collaboration with advanced countries. But our focus is to put ourselves in a situation that we solve the practical problems using those. Now how this requires a balance and how to put ourselves at that particular place where we can really perform the best. Because if we start working on the strategic or the basic research side, we can go. But whether we have a comparative advantage there to compete with the advanced countries, advanced labs, private sector for many of the technologies, we can't compete with them because we don't have the resources. So I think our strength would be if we put ourselves in a very strategic place in that whole continuum from the basic research, strategic research to applied and to the downstream work, so that where we can perform and still not do sight of the fact that farmers' problems should be addressed. And that's the biggest challenge I've been seeing. And then performing that job with the financial constraints that we are facing, that's another thing that we have to solve. So basically in general the challenge is that we have to solve the practical problems by using the advanced science, strategic collaborations both with national programs. And now also another factor that was not there before is strong private sectors. And we have to know how to work with them. I still feel that CG Center as a whole and even at Erie, we are not yet very clear how to work with them in a way that we also get something in return from them. Of course in hybrid rise we have been working in a way that whatever is available we are sharing with both public and private sector. But that's just giving every time. We are not getting anything back in return from them. And the reason we can't get it because we don't have a mechanism at this stage. So that's another challenge that we have to address. And if we, based on my experience in hybrid rise, if we can develop models of collaboration with the private sector, I think this collaboration models, if found successful would be also useful for many other seed-based technologies that we are coming forward which are in the pipeline right now and where we can impact 5-10 years from now. So this is another area that Erie has to look in terms of future.


Thank you, Rudy. Once again, I want to welcome all of you to this open session of the National Advisory Council for Human Genome Research. While I normally would have an in-person audience for my director's report, the current situation with the COVID-19 pandemic has obviously caused me to have to take up a different venue. So I'm doing this presentation while sitting here alone in my conference room. Now in addition, and to accommodate the generally overall shorter council meeting, we decided to shorten my director's report considerably, but nonetheless we retain what I think are a useful assortment of updates that we want to share with you. And as with the rest of this open session, my director's report is being videotaped and that recording will be made available as a permanent archive on NHGRI's website, genome.gov. We do have some new council members and so especially for those who are new to our council meetings, such as those new members, but also others who may be tuning in, I want to make you aware of the electronic resource that we develop for each of my director's reports. It's analogous to a supplemental materials of a published paper and it can be accessed at the URL shown at the bottom of the slide. The slides that I will show during my director's report are also available electronically at this site, either in a PDF format or a PowerPoint format. And when there are documents or relevant websites associated with a particular slide, you will find that document number indicated at the bottom right of that slide. And that document number references materials that can be accessed and or downloaded at the website whose URL is shown here. And again, the dedicated web page that's been built up for this director's report will be a part of the historic record kept on genome.gov. Now there'll be a number of presentations of other presentations during the open session of this council meeting. My director's report is tailored around these presentations, so I'm not going to discuss in detail what others are going to cover. Immediately following my director's report, we're actually going to have four concept clearances presented by staff of the Institute's extramural research program. Luis Cubato was going to present two related training proposals, one on research experiences and genomic research for genetic counselors, and one on research experiences and genomic research for data scientists. The third concept on technology development for single molecule protein sequencing will be presented by Tina Gatlin. And then the fourth concept on investigator-initiated research on genetic counseling processes and practice will be presented by Ebony Matt. For the rest of my director's report, I will cover the seven areas listed here which have reliably provided a nice framework for the topics that we wanted to cover. And we will start with some general NHGRI updates. Now if we go back to February, which seems like it was years ago, not just months ago, but back in February and immediately after we ended the second day of the February council meeting, I had the opportunity to travel, well actually, I Ubered to Capitol Hill immediately after the meeting to meet with several congressional members and their staffs. The photograph shown here was taken at the end of a very productive and engaging meeting with Representative Eric Swalwell of California's 15th District. We had a wide-ranging discussion about genomics, precision medicine, and the future of healthcare. I can report to you that Representative Swalwell is extremely interested and quite well-informed about genomics and its many promising developments. Part of our work here at NHGRI is to inform members of Congress, like Representative Swalwell, to respond to their questions about the science that taxpayers' dollars are funding. And I was pleased of this opportunity to fill this part of my job back in February on that day. Now while my meeting with Representative Swalwell was enjoyable and it was productive, my favorite appointment since the last council meeting occurred a couple days later when I had a spirited encounter with eight energetic yellow Labrador Retriever puppies as part of the NIH Puppy Cam 2020. This event showcased the important role that dogs play in various aspects of human health, such as serving as support and therapy animals, stress relievers, and companions. In NIH Puppy Cam 2020 was live-streamed and started a set of puppies who were in training to become service dogs. Throughout the day, various NIH staff, including some prominent senior leaders, were asked to hang out with the puppies while being interviewed. I can tell you from first-hand experience that this sounds easier than it is, especially knowing that the interview was being live-streamed and when you have a puppy laser-focused on eating your lapel microphone, as you can see on the right. Nonetheless, I survived this very tough assignment and was able to talk about the importance of dogs in my life and even provide some facts about the dog genome. NIH Puppy Cam 2020 was a huge success on social media with almost 50,000 views on Twitter and over 170 million impressions of the various tweets from NIH staff. NHGRI's Genomic 20 Strategic Planning process is now well into its home stretch en route to developing the Institute's new strategic plan, which will be published in October of this year. To date, Genomics 2020 has been associated with over 50 events that gathered input and feedback from the research, healthcare, education, policy, and diverse public communities. These events have included town halls and workshops, meeting sessions, advisory committee discussions, webinars, and poster sessions, among others. A draft version of the strategic plan was made available for comment last month with feedback received through various means. We are now actively synthesizing that feedback and finalizing the strategic plan, which will be submitted for publication in the early summer. Moving on then to some general NIH updates. Dwayne Alexander, the former director of the Unis County Shriver National Institute of Child Health and Human Development, or NICHD, passed away in February. He was 79 years old. As NICHD director, from 1986 to 2009, Dwayne led efforts to improve the health of mothers and children through research and its translation into practice. He presided over efforts that led to the near elimination of maternal to child transmission of HIV in the United States, the prevention and correction of neural tooth defects, such as spina bifida, and the identification of the genetic basis of Fragile X and Red Syncopes. Now, the rapidly changing situation with the COVID-19 pandemic is raising many questions by many people. Several government websites are available that provide relevant information about the virus and the disease that it causes, such as those as the Centers for Disease Control Prevention, or CDC, and the NIH. Now, for NIH grantees and applicants, a new COVID-19 resource is now available on the NIH Grants and Funding website. In addition, NIH regularly issues news releases regarding COVID-19 related funding, funding research and scientific findings. Finally, NIH director Francis Collins' blog provides another good source of updated information. Needless to say, NIH is aggressively tackling the biomedical research challenges associated with COVID-19. These efforts include developing programs and mechanisms for funding research grants related to COVID-19. For example, a number of NIH institutes and centers have issued funding opportunity announcements or FOAs to solicit research proposals related to COVID-19. Now, recognizing the interest and opportunity in the genomics community to contribute to COVID-19 research, NHGRI has issued a notice of special interest, or NOSI, regarding the opportunity for making urgent competitive revisions to existing research grants. Specifically, this NOSI invited current NHGRI grantees to submit proposals for adding research elements to their existing grants. These elements needed to address scientific questions of direct and immediate relevance to the COVID-19 pandemic. Applications in response to this NHGRI NOSI were due on May 15. Now, in May, we typically provide an update about the activities on Capitol Hill related to appropriations, as lawmakers are usually drafting bills to try to have a budget in place prior to the beginning of the next fiscal year on October 1. In fact, we typically would have seen the first versions of the appropriation bills being voted on and would have a sense of the possible budgetary numbers for the Department of Health and Human Services, and perhaps even the NIH. However, as you can appreciate, this is not a typical year. Nonetheless, even in the midst of all the legislative work related to COVID-19, staffers are also simultaneously drafting budgets for fiscal year 2021. We hope to see those numbers sometime soon, but as with many things in the moment, we will have to wait and see what happens next. Meanwhile, and as a reminder for fiscal year 2020, the final NIH appropriation was $41.7 billion, with NHGRI receiving around $606 million as can be seen in the middle column. This reflected a roughly $2.6 billion increase for NIH and a $31 million increase for NHGRI as seen in the second column from the right. Overall, this made NIH's increase about 6.6 percent, and NHGRI's increase about 5.4 percent, as you can see in the far right column. Moving on then to some general genomics updates, Kenneth Pagan, a geneticist who served as the director of the Jackson Laboratory, or JAX, from 1989 to 2003, died in February. He was 92 years old and actively conducted research until shortly for his death. His research spanned investigating the molecular mechanisms of gene regulation to study recombination hotspots in the human and mouse genomes. He was also an early advocate for mapping and sequencing the human genome. According to a statement from the JAX quote, Pagan was a brilliant scientist, a treasured colleague and mentor, and a towering figure in JAX's history. He will forever be remembered for the indelible impact he had on JAX, including his leadership in rebuilding the lab following the devastating fire of May of 1989. Mary Shimayama, who's associate professor of biomedical engineering at the Medical College of Wisconsin, principal investigator, a PI of the RAT Genome Database, and one of the leaders and major contributors to the NHGRI Alliance of Genome Resources, sadly passed away in February. Mary also served as a co-PI of the Sematic Cell Gene Editing Consortium's Dissemination and Coordination Center. She was a strong proponent of the use of model organism data and bioinformatic methods to support research into human diseases. And James Taylor, professor of computer science and biology at Johns Hopkins University, passed away in April. James was one of the founders and developers of the Galaxy Project, an open source platform for data intensive genomic research with an international community of users and developers. A strong advocate for open genomic data science and reproducible research, his work in biomedical data science education and training for the Galaxy Project inspired and benefited many scientists around the world. He was also a lead investigator for the NHGRI Anvil platform. James made numerous other significant contributions to NHGRI and Genomics starting with his work on the ENCODE pilot project as a graduate student at Penn State University. He also had a commendable record of serving at NHGRI and other NIH reviewed panels. The National Academy of Sciences recently announced their newly elected members of particular relevance to the genomics community at NHGRI are the individuals listed here. We extend our heartfelt congratulations to these colleagues with a special shout out to Howard Chang, one of the new council members. And then in breaking news from last week, former council member Aviv Ragev will leave the Broad Institute of MIT and Harvard later this summer to join Genentech as the new executive vice president of Genentech Research and Early Development or G-RED. In her new role, Aviv will continue her research spanning cell circuits, tissue circuits, and human biology and disease, including translational work involving patient biology and therapies. She'll be moving to the San Francisco Bay Area in August, but her laboratory will continue at the Broad Institute for one more year. Moving on then to the NHGRI Extramural Research Program. The Cancer Genome Atlas or TCGA was a coordinated effort between NHGRI and the National Cancer Institute or NCI. Although this project completed data generation in 2016, its data and resources continue to be used for studying the molecular basis of cancer. TCGA partnered with the International Cancer Genome Consortium or ICGC and the PAN Cancer Analysis of Whole Genome project. And the major findings from this project were published in Nature and Nature Journals in February. Now this nature collection included 24 papers with relevant links to data portals and data sets. The cross-tumor analysis involved over 2,600 cancer genome sequences and their matching normal genome sequences across 38 tumor types. And that enabled scientific discoveries of fundamental cancer biology, including the ability to infer the order of cancer-driving mutations that may have happened decades earlier. Innovations in large-scale data sharing among international partners in a cloud-based environment was an essential part of this project's success. Now, NHGRI has extended the receipt date related to two new funding opportunities from Mendelian Genomics Research Consortium. As I mentioned in my February Directors Report, NHGRI intends to fund research centers that will discover novel associations of Mendelian conditions as well as develop and apply approaches to discover causal genomic variants in known Mendelian conditions for which a canidine was not identified by exome sequencing. NHGRI will also fund a data coordination center that will manage data release and disseminate findings, coordinate program logistics and administrative duties, and oversee an opportunity fund for follow-up functional studies of discoveries made by the research centers. Now applications for the research centers and data coordination center are now due on July 15, 2020, and all applicants are encouraged to submit letters of intent by June 15, 2020. The Human Genome Reference Program, or HGRP, represents NHGRI's continued commitment to refining and maintaining the human genome reference sequence. Specifically, HGRP is a multi-component effort that aims to improve the human genome reference sequence and foster its long-term sustainability. At the February Council meeting, I announced the first two components of this program, which were awarded last fall. Specifically, a Human Genome Reference Center at Washington University, and a High Quality Human Reference Genomes Sequencing Center at University of California, Santa Cruz. This spring awards were made for a third component, the genome reference representation. This component will focus on research and development for establishing next generation genome reference representations that capture human genome variation and enable research on the full diversity of populations. Awards were made to Hang Lee at Dana-Farber Cancer Institute, Mark Chasen at the University of Southern California, and Han Lee Gee at Stanford University. These new projects will seed an open source model that encourages the integration of community-based tool development for genomics, epigenomics, function, and clinical research into the HGRP. And HGRP is expanding our successful genome sequencing program to include two new components. First, we have released a series of related funding announcements focused on technology development to improve the quality, capabilities, and efficiency of nucleic acid synthesis and synthetic constructs at decreased cost. Second, we have released a funding announcement for Coordinating Center to help integrate, accelerate our genomic technology development efforts. The Coordinating Center will be responsible for facilitating collaborations, sharing program advances, promoting standards, and managing an opportunity funds program. Applications for both of these initiatives are due on June 24th of this year. In addition to these new activities, HGRP continues to fund novel nucleic acid sequencing technology development work to decrease nucleic acid sequencing costs, develop nucleic acid sequencing methods, and increase throughput. Applications for these areas are due on June 26th, 2020. We also continue to fund nucleic acid sequencing technology and genomic technology through the NIH Parent Funding Announcements. The Phenotypes and Exposures Toolkit, or Phoenix, is a catalog of consensus protocols for measuring phenotypes and exposures in biomedical research. In response to the COVID-19 pandemic, NHGRI and the Phoenix team, led by Carol Hamilton at RTI International, have collaborated with a trans-NIH working group co-led by the National Institute of Aging and the Office of Behavioral and Social Sciences Research to create a catalog of available measurement protocols for COVID-19 research. The goal of this resource is to facilitate collaboration and data integration. Domains include COVID-19 symptoms, knowledge and attitudes, adherence to various mitigation behaviors, social impacts, and economic impacts. The Clinical Genome Resource, or ClinGen, evaluates and disseminates the clinical relevance of genes and genomic variants for use in precision medicine and research. In January, the Unis County Shriver National Institute of Child Health and Human Development, or NICHD, issued a funding opportunity announcement to establish ClinGen expert panels for curating genes and genomic variants associated with diseases or conditions of high priority to NICHD's mission. Now, in addition to NICHD, the National Cancer Institute, or NCI, the National Eye Institute, or NEI, the National Institute of Mental Health, or NIMH, and the National Institute of Neurological Disorders and Stroke, or NINDS, have also signed on to this funding opportunity. Now, these expert curation panels will be required to utilize ClinGen curation frameworks and tools to determine the clinical significance of the selected genes and genomic variants. The final assertions and supporting evidence generated by each expert curation panel will be deposited into ClinVar, and there will be an annual application due dates, the first one being May 27 of this year. NHGRI has issued two new funding opportunity announcements for a polygenic risk score, or PRS diversity consortium. This consortium will study the known, poor PRS-based predictions of health and disease risk in non-European populations compared to European ancestry populations using existing data sets that are genetically diverse and have broad phenotype information. For the first funding opportunity, grantees will harmonize phenotypes, develop PRS methods, and collaboratively generate refined PRSs for populations of diverse ancestry and a range of complex diseases and traits. For the second funding opportunity, a coordinating center will be established for the consortium and will focus on data integration, methods development, analysis, and dissemination of PRS models and data to the broader scientific community. Applications for both funding opportunities are due on June 23 of this year. Now, the September 2019 Strategic Planning Workshop on Genomics in Medicine and Health recommended the engagement of patients, providers, and communities as partners in genomic medicine research. To address this recommendation, NHGRI offered a supplement opportunity for stakeholder engagement in genomic medicine research. These supplements will support partnerships between genomics researchers and relevant stakeholders, such as professional societies, payers, public health, and regulatory agencies, communities, patients, patient groups, primary care providers, and caregivers. The goal of these research partnerships is to enhance the translation of genomics and to improve clinical care and public health. The deadline for responding to the supplement opportunity was last week. The February 2020 report from this council's Training and Education Task Force recommended the expansion of opportunities for individuals to obtain training in genomics research. NHGRI has moved quickly to develop supplemental opportunities to fund research training for genetic counselors and data scientists. The task force also recommended the development of training modules and the training of healthcare providers in response to these recommendations. We are collaborating with the National Center for Advancing Translational Sciences to provide support for the development of training modules in genomic medicine and the National Institute of Nursing Research for Genomics Training for nurses. The submission deadline for these supplemental opportunities has now passed. Of note, we plan to follow the short-term one-time funding opportunities with long-term programs to address the needs identified by the task force. Now, in order to manage the COVID-19 pandemic realities related to travel limitations, stay-at-home orders, and social distancing routines, many NHGRI and NIH meetings have been canceled or rescheduled and or held virtually. Since this was a shortened director's report, we decided to provide simple lists about the fate of various meetings. As you can see here, H3Africa, Anvil, UDN, Ignite, and the Genome Sequencing Program have all held virtual meetings over the last few months. Meanwhile, the Advanced Genomic Technology Development Program, CSER, and the GWAS catalog, and a combined Anvil with the Genome Sequencing Program will all hold virtual meetings over the next couple of months. The LC Virtual Forum will be held on June 15th and 16th of this year. This is going to be a free online event featuring keynote and plenary speakers as well as panel presentations over the course of two days. Registration is required by June 10th. Meanwhile, the Fifth LC Congress, which was originally scheduled for June of 2020, has now been rescheduled to March 22 to 24th of 2021. And lastly, both the GM-13 Genomics and Public Health and the curating the clinical genome meetings have been postponed, with the new dates to be determined. Moving on, then, to NIH Common Fund and other trans-NIH efforts, I'm just going to have one update here related to H3Africa. The central goal of the Human Heredity and Health in Africa or H3Africa program is to build a sustainable and collaborative African genomics research enterprise. Now perhaps not surprisingly, as COVID-19 continues to affect global populations, H3Africa investigators are guiding the response to the pandemic on the African continent. In March, H3Africa investigator Christian Happy and his team at the African Center of Excellence for Genomics and Infectious Diseases led the effort to sequence the first African SARS-CoV-2 genome in coordination with the Nigerian Centers for Disease Control and other Nigerian research organizations. In addition, Dr. Happy and his center have been tasked to sequence samples from all COVID-19 patients in the African Union for the duration of the pandemic. Several additional H3Africa investigators are now involved in larger roles related to the international domestic responses to the COVID-19 pandemic, such as serving on presidential task force, providing guidance to their respective ministries of health and coordinating institutional responses to COVID-19. These investigators, such as those listed here, have been and will continue to be influential in guiding the response to the pandemic, as well as shaping the future research priorities in their respective countries. Moving then to NHGRI's Division of Policy, Communications and Education. For almost three years, NHGRI has been working in partnership with the Washington, D.C. local public broadcasting system affiliate, WETA, in support of developing the film, The Gene and Inimate History. The four-hour two-part documentary from Ken Burns and Rod Goodman aired on April 7th and April 14th and was adapted from the award-winning book of the same name by Sid Monkardji. The documentary wove together science history and personal stories in describing a historic biography of the human genome while exploring breakthroughs for diagnosis and treatment of genetic diseases and the associated complex ethical questions. NHGRI was the major education and outreach partner associated with the film and assisted with the development of engaging educational animations, lesson plans, and a do-it-yourself or DIY version of the Smithsonian National Museum of Natural History NHGRI exhibition, Genome Unlocking Life's Code. Information about these resources can be found on the PBS Learning Media website and the National Museum of Natural History's DIY exhibition website. April 25th is National DNA Day and every year NHGRI hosts programs and offers educational resources to mark the occasion. This year, DNA Day was celebrated throughout April using virtual formats. A Twitter chat was held on April 9th highlighting genetic, genomic, and general STEM resources available to families celebrating DNA Day at home. Then on April 16th, NHGRI partnered with HRE African grantee Nikki Molder and her team to host a DNA Day virtual speaker exchange. Ayo Damate of NHGRI Center for Research on Genomics and Global Health and H3 Africa trainee George Daroka each presented the research findings to a global audience. Finally, on April 23rd, NHGRI's Genomics and Health Disparities Interest Group hosted a DNA Day 2020 virtual presentation by seminar speaker Janela Jeffs who spoke about using bioinformatics and podcasting to advance precision medicine initiatives in diverse populations. The Inter-Society Coordinating Committee for Practitioner Education in Genomics or ISCCPEG aims to improve practitioner genomic literacy and enhance the practice of genomic medicine through the sharing of educational resources and identification of educational needs. Now ISCCPEG membership includes over 180 representatives from professional organizations and societies and NIH institutes and centers and industry as well as individuals with expertise in medical education. This year's in-person meeting was held back in February. This meeting included a keynote talk by council member Jeff Botkin and updates about funding opportunities for NHGRI extramural program staff. And finally moving on to NHGRI's intramural research program one but very notable highlight Bill Gaul senior investigator in NHGRI's medical genetics branch and founding director of the NIH undiagnosed diseases program was honored with the 2019 U.S. Department of Health and Human Services Career Achievement Award. This award recognizes employees in the department with 10 or more years of service for their dedication and accomplishments. Bill was also recently featured in MIT technology review a very impressive achievement as well congratulations to Bill. And then before ending my brief or the unusual director's report I would like to as always put in a plug and say that anyone wishing to receive my monthly email update called the genomics landscape can simply go to the NHGRI website genome.gov and subscribe under email updates. And finally personal thanks to the many NHGRI staff members who contributed the slides and associated materials that I just reviewed in my director's report as always requires a group effort to put such a large amount of material together and to be able to convey it to council in each meeting. An additional thanks to our communications group and web team for making director's report an electronic resource and as always a special thanks to the ringleader for helping to prepare my director's report each time. Chris Watterstrand shown here on the top row second from left. And this is one of the many Zoom based virtual meetings we've held. This particular one was for the last ever meeting of the genome sequencing program. And with that I will stop and happily take any questions that you have. Rudy feel free to moderate any Q&A. Any questions for Eric about the director's report? Hearing none I think Rudy we can proceed with the open session agenda. Okay very good.