 So, we're next going to hear from the Community Engagement and Genomics Working Group, and I've asked Carla Easter to introduce the working group member, Gwen Darian, who will give the presentation. And Carla is the education part of the Division of Policy Communication and Education. I have it. I have it. We're just going to leave this here. Wonderful. So, I have the pleasure of introducing Gwen Darian, who is the chair of our working group and, in fact, is the first chair of our Community Engagement and Genomics Working Group. But Gwen has a long history in engagement and working with the Genome Institute, which she will talk a little bit about. She is, as I said, a longtime patient advocate. She is currently the executive vice president for patient advocacy and engagement at the National Patient Advocate Foundation, and also a three-time cancer survivor. And so, it has been a wonderful opportunity to work with her, and it is my pleasure to have her talk about the working group and our activities over the last year and a half, two years. Wonderful. Okay. Thank you. Carla. And, okay. So, the first thing I have to figure out is how to advance the slides. Oh, okay. Yeah. I'm a little technologically challenged in terms of that. Anyway, thank you very much for having me. Thank you, Dr. Green. Thank you, members of council. I actually had to edit my presentation because I put we are the newest working group, but in fact, we are the second newest working group of the council. And I thought that it was really interesting that one of the things that Trey Idecker finished with was this notion of community engagement. And I'm not sure whether our ideas of community engagement are the same, but I think that we are going to pick up a little bit where Trey left off in terms of thinking about community engagement across very, very different stakeholders. And as everybody in this room knows, I'm not telling you anything you don't know, if we have the science, we have the medicine, and then we have the community engagement. Nothing's going to go anywhere unless the community is engaged in making sure that genomic and precision medicine is adopted by the community and also is equitable and available to everybody in this community. So we are, this is us, and I have to say I've never watched that show, but I love that title, this is us. And we began as an ad hoc working group, which was called the partnership for, I have to read that, partnership for community engagement and outreach, community outreach and engagement and genomics in 2017, we became a working group of this council. And as you can't tell from this, but you can tell the diversity of faces and expressions and engagement, and there's just a different spirit in every single picture that's up here, we are, we include community leaders, we include liaisons, health advocates, community-based researchers, health practitioners, and patients and caregivers, and we represent very diverse populations from across the nation. We are, of course, any group can't represent all communities, but as we transition in our membership, we will continue to try to make sure that voices are heard and also try to make sure that the people who come are not only representing their own voices, but also out there thinking and talking to everybody, to other people about what genomics means to them. I, we have very, we are very different stakeholders, we have very different perspectives, and we have a very trusting and open relationship among this group. And I'll talk to you a little bit more about that later. The other thing that's really significant about this group, and uncommon for NIH, and I will say, I chaired an advisory group for the National Cancer Institute, as Carla mentioned, I'm a three-time cancer survivor, and I am not a professional chair of advisory groups, but I seem to be part of a lot of them, because I find them, I find the bringing together of these multiple perspectives so important, and so, and it is the cliched sum as much more, the whole is much more than the greater, greater of the sum of the parts. So this group is really uncommon, because it is not disease focused. It's really community focused, and there are many advocacy groups that provide input to the NIH in various different ways, but in many ways they, a lot of them perpetuate what we used to call when I was working a lot in breast cancer, the disease wards, breast cancer and HIV, being one of the examples of that. And this is a very different shift in a traditional frame. The other thing that we do is we ask people to represent and talk to their communities, but also go back to their communities and talk about things that we have talked about within the group that other communities are thinking about. So when I did, when we had our first meeting, when we changed from a ad hoc working group to a ad hoc partnership to a working group, I likened the change to a, I used a musical metaphor, so my favorite music is jazz, and in jazz, and before that we were a bunch of soloists, but in jazz everybody plays, they play together, they go apart, they improvise, but in the end they all come together. And we all represent different things and we all have different tunes that we carry, but we come back together and then we go back out again. And so our group I think is very unique in terms of building this kind of trust and open and honest relationship where we can talk about very difficult issues in a very open way, bring them into the group and then bring them back out again. This lens also gives us the opportunity to really be timely and to be responsive and to be very, very agile. So we build bridges across the institute. We also have bridges across other institutes. And I wanted to, before I went on, I wanted to just tell you a little bit about the genesis of our group and the genesis of what we did. As we mentioned, our group came out, it was prior to becoming the community engagement and genomics working group. Several members of our group were part of a more ad hoc group, the partnership for community outreach and engagement and genomics. And the genesis of much of this came out of conversations with Fence Bonham when the genome exhibition was at the Smithsonian talking about how we could further engage communities and how we could bring patient advocacy into this, health advocacy into it, community engagement into it and community leaders. And it started with a meeting that Fence and a number of us organized that was the ad hoc committee. So I wanted to say a special thank you to Fence Bonham who was there at the genesis of this working group and this kind of engagement, very new and unique engagement. I also want to say a special thank you to Laura Rodriguez, Laura has always been an incredible champion of our group. And I first met Laura when I was chairing the, now it's called the, well it was called the director's consumer liaison group, I can't remember what it's called anymore, the National Cancer Institute. And Laura from the beginning that I met her was devoted to bringing community voices into these discussions. And then of course Carla Easter who's the director of the branch and Christina Dalton who keeps, who is our education specialist and keeps everybody going together. But this was a group that started and didn't know where we were going, but we started and we did some very specific projects. So I have to remember to do the slides, that's the other thing I always forget. There we go. Okay, so we started out, we did a few project partnerships and some of them started while we were an ad hoc committee and some of them have continued into being a working group. The first ad hoc committee project we did was called your genome and you. And that is an infographic that the group developed together to talk about what genome was. We brought in a lot of comments, it took a long time to do, but it was something that was really in the end everybody in the working group felt very proud of and felt very much as if they could be part of. The, we, many people were talking about really wanting very basic information and being able to have information that could be shared across communities not just for one community or another. We also recognized the need to work in partnerships with other groups and so one of our members who is at the University of Washington came to us with an idea to look a collector with her colleagues at the University of Washington collector review of studies looking at the knowledge, attitudes and perceptions of the public towards genetic counseling and testing. And a manuscript was drafted and several members of the working group provided input. And then the final project that has actually just launched and we are, we are a member of is a project called the health experience research network. And it comes out of a project called DIPEX, which is at the, that was started in Oxford, which is the database of individual patients experiences. There are now over 142, 142 diseases. There are millions and millions of viewers. And what they do is they create modules that tell the stories within a qualitative research framework of experience with disease. So the second module in the U.S., our colleague who is actually in the first partnership is the PI for at University of Wisconsin is on genomic medicine and it's focused on colorectal cancer, breast cancer and Lynch syndrome. And so that just launched and I am the, I'm a representative, I'm on the advisory group as a representative of the C.E.W.G. And that will be done probably in about two years and they'll be, we're talking about how to how to feature that on the NHGRI working, or the education branch and NHGRI website. Then the other thing that has been really important and people have come to us about is to have honest and direct feedback from diverse perspectives and really open feedback. So as more and more people know about our group, we've been, we've been sought after for, for input and for diverse perspectives. The, many of these things have happened on an individual basis, but they are members of our group and it's become more and more, we've become more and more known. So we've been, a number of us have been involved as individuals in, in providing input into the all of us research program, the 1000 Genomes Project and just about every single member of the working group was the GLEE group. We provide a, we provide a sounding board and a testing board and we also provide a more, a well-informed testing and sounding board because as we learn more about genomics in our group, our group, the people that we work with learn more about the communities that we represent and the communities that we, that to which we all speak. The other thing that we did was that we've also reviewed early drafts of the, of the feedback on the series of videos called 42 North and Public Facing Videos about Genomics and those are on Genome TV. So one of the other very important things that we did is that we've been creating dialogue and intersections with a lot of other projects and a lot of, a lot of other places where we've elevated genomics into conversations where many of us are, are out in the community and there were not conversations about genomics and genomic medicine. So for example, Carla Easter came and talked to two workshops that my organization, the National Patient Advocate Foundation did on skilled communication with patients and care, patients, caregivers and healthcare providers. One at the Mayhack Mountain Area Health Education Center in Asheville and one at the University of Illinois Cancer Center and I will say because I shared the evaluation with Carla that at the University of Chicago where we did the first real evaluation, it was one of the highlights of that, of that workshop with primarily, primarily cancer patients in that workshop. The four NHGRI staff members were invited by a working group member from the coronation to have a community meeting at the tribe's tribal college and there's lots of work that's coming out of that. The genetic alliance asked us to the working group's feedback on the early drafts of their epigenomic infographic and draft guide to community partnerships and needs assessment. One of our members just provided an introduction to the Morehouse College of Medicine, a strategic planning event and one of our working group members was a featured speaker for NHGRI's history program series and he spoke about historical trauma and its effect on Native groups, Native youth. So I think one of the things that's really important about this and I think it's been, it has been a implicit but I want to make sure that it's very explicit is that one of the power of our group is that it's bi-directional, that these conversations are bi-directional. We learn from the NHGRI, the NHGRI uses for learn from us and I actually wouldn't even say bi-directional, I would say multi-directional because we have all learned from each other in the working group and we have spent a lot of time and a lot of intentional energy creating a space where we can talk about some very, very difficult things like structural racism, like historical trauma, like sexual orientation and what that means in terms of economics. Issues that are specific to one group that other groups may not necessarily understand and we've looked, we've approached it all with incredible, I would say a lot of openness, a lot of heart and a lot of willingness to listen to very divergent points of view. So one of the things that we realized was that we needed to do, we had been, we had been working together for about a year and we decided that we were faced with a lot of questions about genomics and health care. There are a lot of questions about equity and genomics in health care, there are a lot of questions about what it is, there's a lot, there are a lot of questions about what is the real promise of genomics and health care and what is the promise that is more exceptional in terms of genomics. So we did a survey to our group, about three quarters of our group answered this survey as the basis for some of the work that we're going to do, work we're going to do as we go forward. And so we really can't serve our communities or the NHGRI unless we know what their experiences are with genomics, health care providers and what kind of, what they need or what they're interested in receiving. And so these are some of the quotes that sort of rose to the top from this survey and I will say it was a survey monkey survey, it was not, it was a market research survey, it was not a rigorous research survey, but it could be a hypothesis generating survey. So there's little awareness about genomics and lots of misconceptions, we all know that, but it's also important to have that reinforced and continue to be reinforced because if we don't address the misconceptions we're not going to move forward. There are very limited resources for genetic testing or counseling in our community and we see that everywhere, actually the Patient Advocate Foundation which is my other organization, I work, I, I span the two organizations. We have a genomic and genetic testing care line to help people access genomic testing as well as access care once they've been prescribed a treatment course based on genetic testing for which they have barriers to getting that usually insurance denials. I think that every, every cancer patient, so we have a lot, we have, you know, clearly cancer rises to the top when we think of that, should know about their potential risk and whether they should or should not be tested, we've talked about that a lot. The other thing that I think is really interesting is the idea that this has to be very solution oriented. So any engagement that just focuses on understanding the disease or drug discovery or diagnosis is effective but general education is of less interest. There has to be something, there has to be something actionable that people can do with it. Of course community educators are key and people who are trusted by the community but it was, we know that but it's important to be, it's important for that to be reinforced and that they're key tools to deploying into the community with information about genetics and that's part of what we do with our working group is that we try to help enable people to go into their communities and teach other people to go out beyond their communities and the, and the dissemination of culturally relevant information on the influence of genetics and environment on chronic diseases affecting our population and so people talked a lot about what was important to them and what was important to their different populations, what was important to American Indian populations might be different and the approach might be different than what was important to it to African American populations or Latino populations or Muslim populations. So then the other thing that was critically important when we did this was identifying barriers or concerns and what we can do with some of these barriers and concerns. And one of the things that came out very strongly and very movingly to us particular was that this quote from one of our working group members, many LGBTQ people are very concerned about genomics. The recent news regarding the federal government's proposed definition of sex is as mutable and based solely on chromosomes, many transgender people think of genomics genetics as a tool of an enemy. And I think that we have to, we know that there are communities who can, who think of genomics as the tool of the enemy but I think that we don't always know every community that thinks about genomics in this way. I think the other thing that of course happens often in these groups especially when you're trying to be represented, I mean larger groups that are trying to be representative is that we can be a little reductionist in our thinking. And so one of our Latino members reminded us that Latinos as a group are not homogenous in their beliefs, thinking culture or history and that there's some resistance among some particularly those with indigenous beliefs about sharing their spirit. So these are the kinds of things that within our group we were really surfacing and we were really surfacing in places where we could have honest and safe talks. Our group is a, not to use a cliche, but is a very safe space where we can really focus on what, on people feel comfortable enough to talk in a, with people of very different values, beliefs than they do because they feel like they will not, that they will be heard and that people will take what they've heard back and integrate that into their learning. So then we talked about collaborating to find what works, follow the lead of the communities themselves who have already been working to improve the patient experience, fund research on patient engagement and satisfaction in the clinical encounter. That's a lot of work, that's a lot of what a lot of us are doing in other places. I work a lot with PCORI, for example. Needs assessments, tools to collect patients feedback and that's what we started with the University of Washington project. Help bring communities and health care providers together in a discussion about genomics and health that provides a safe space for everyone to raise questions. And as I mentioned before, Karla came and spoke at two of our workshops and was very and had I think a really terrific, very deep discussion with a lot of our participants. I know we say this about every topic, I'm reading a quote, but bringing in, bringing genomics in early and often into the schools at every level will help it to diffuse into communities. I truly believe the more we have local community-based individuals working to provide the day-to-day outreach, education, resources and with all the available materials we would impact more on the genomics health research we could meet with our local tribal and state representatives in expanding the goals of the NHGRI. And we have quite a number of representatives from the American Indian population, which as we know has significant historical trauma around genomics and significant concerns around genomics. So our goal is to provide NHGRI with better understanding about the challenges of, challenges to an acceptance of genomic resources, research and also to the uptake of genomic applications. And as I said in the beginning, our group should be a group that is used to both go out, both understand what's going on externally and within our group, but also to use as a group that can speak out into the communities as we all have been doing. We are committed to equity, we are committed to equitable access, we're committed, there was a lot of talk about equitable access and representation on in a lot of research studies, we are committed to that and then we are also committed to making sure that the fruits of genomic research and genomic medicine are available to all. And I will say that I think we've gotten, we've moved quite far with our committee, our, it's actually not so small anymore, but our mighty committee in and have created a really pretty extraordinary dialogue within that community. And I think we've gone a long way, I'll end with a personal anecdote. My dad is a retired physician, he got a master's in genetics in the late 50s, maybe early 60s, right at the beginning. And so I knew we needed more education in genomics when my sister Suzanne said, dad, now I get genetics. We have three brown eyes and three, one of my siblings has blue eyes. She said, I understand Mendelssohn's peas. So I think we've gotten beyond Mendelssohn's peas, we are creating a stronger understanding and I hope that we're bringing back some understanding into the NHGRI and we are grateful for this opportunity to be a working group and thank you to everybody. And I'm happy to take any questions. Okay. Well, thank you very much. All right. So let's boost those caffeine receptors and take a break for 15 minutes. Please be back at three 20. Okay.