 Good morning. So I'm one of the probably minority informaticists in the room, so we'll be taking a slightly technical bend So my role UC Davis is academic research informatics But I in here in this room because I've been participating in a lot of patient-powered research networks and student science for quite some time Because of just kind of a moral need So what I'm going to talk about very quickly is Sharon Terry in she here now. No, there she is So I'm partially representing Sharon and our community-engaged network for all which is Bacore project So we've got this this has been the opportunity to assemble a number of the different aspects of What we believe are methods to engage citizens and communities in research? actively and since I'm an academic medical center one of my biggest motivations is just to recruit patients and Sustain that recruitment and engage them and continue to do that the patient-powered research networks are a little bit outside the AMC's But we have a process between the two so it's going to speak to the three components of how we are now modeling and doing this in Real-time and how they are assembled into what I think are possible methods and approaches to engage this first is that with the philosophy is that we are what we're interested in is establishing trust and Through this certain trust and through informed communities and hopefully this is beginning to lead to a new kind of an agor a social space where Participation can happen more actively than it has traditionally We need to develop this trust through community contact Direct level is those points we need to support a spectrum of how our participants engage in these communities and develop trust and we need to address the concerns through an active and dynamic process and I think something that we're learning and we'll continue to learn is that we need to recognize and support the leaders that are also Advocating these communities communities are led by people. They tend to have different aspects and engagements But we recognize that these are influences and leaders. So what we've been doing within the CENA project to engage network for all Formerly reg for all we decided to go big or go home. This is for everybody Is with three major methods the first is that when we originally wrote the grant we Genetic Alliance has many many disease efficacy organizations DO's and we held a competition in order to have them Proposed to us how they would like to be engaged in more of a network-based community participant registry environment And so we sent this out as competition. We had I think 90 responses and These advocacy organizations themselves proposed exactly how they'd like to be engaged who would lead this what was the domain context and But what ways they would learn and benefit from from the work We then engage them in the grant and now we have 10 of these DO's and we're going to 40 over the next year and a half I'm told And we use these leaders turned out to be the active participants now They aren't Informaticists as we've learned they are advocates there. Sometimes they are scientists or more from the not they are not so we're learning a lot about how we translate the needs of data definitions and data dictionaries to those who are less Experienced in that but it is something that we have now begin managed to assemble across these DO's is Representation of how you characterize rare advocacy diseases through clinical phenotypes. So that is but this has really been led by our leaders and our participants That that part of our process is to just really capture the leadership and really begin to you know build this community Through that perspective second part of it is the platform itself that we're deploying This is an actual web-based platform that has a critical component Which is that it has is privacy nuanced privacy aware anyone who this is aimed at the participants or the leaders or anybody Anyone who participates in this platform? Has the ability from the first second to their approach it to identify how comfortable they are for Sharing and developing privacy Explaining their perceptions on how they would like to be represented We do this a couple of ways first we provide a range of different advocates Who are in the desire disease advocacy organization who they might be like there might be someone who is very much of a of a active enthusiastic share George churches of the world and then there's those who do not and we allow them to identify with these Which are actual patients or participants and see if that's how they wish to participate Then they have the ability to modify these privacy preferences at a very granular level so they can say well I am an active engage participant But I do not want to share with the government, but I would like to share where do she on connect But I would like to not determine work with a certain investigator within a certain hospital or something like that We have this very very granular approach though right now We're focusing on really the more general classification of are you engaged? Are you not engaged? And so that is the platform the platform is now deployed out to almost all of our I think all our daos now And then finally what we're trying to build is aimed at the participants the leaders and the researchers themselves so at UCSF they've dealt a platform called open proposals what open proposals is is a collaborative development research environment from which Proposals for active research are being developed. It's been in place for about three years now what we'll be doing with a Sina and and the rest of our PPR N is Providing this as a mechanism for both the researchers and the advocates and the leaders and anyone to participate in development of These projects the key aspect of this is that you can't actually just submit a proposal to open proposals You have to participate in development of all the other proposals to just participate in your proposal You have to comment and peer review everything that is being developed And you have to engage at a very common transparent level so advocates and patients and participants At the same level as the researchers and when they're participating and developing these proposals Everything is very transparent and I'm gonna look at it It is we were still exploring whether or not we're going to support anonymous comments and so forth We think there's obviously a place for that, but it's this is going to result We starting in about four months in proposals that will be directly from patients and participants at UCSF and UC Davis Engaged in developing research proposals for their rare disease communities that we will be providing pilot funding that we will be then Advocating and extending to hopefully other mechanisms So that's our three main methods and outreaches of this want to mention one final thing is That there's been a series of projects that has begin to develop really the place where communities are engaged one of my colleagues at UC Davis and Kotler at all used the CTSA Sentinel Network and two large communities to actually look at underrepresented groups in the San Clemento Central Valley and elsewhere and used five CTSA sites two community organizations to really determine affinity and interest in research and So they use community groups for the outreach. They use the on the ground Meetings to actually do the interviews and everything else. They determined that out of almost 6,000 people surveyed 91% the highest reported outcome of this was African Americans 91 point 91% Instead they were interested in research They're the highest group to be interested in contributing biospecimens use of medical records staying overnight medical hospitals use of medical equipment and And that outweighed all other ethnic racial ethnic groups, but this was consistent across all geographic areas So again, this is the where finding and using the community leadership and Contacts gave the leverage for being able to develop these methods that are going to result. Hopefully in the academic clinical research environments