 Okay. Now can you hear me? Great. Okay. So I have to say seven minutes is a big challenge here. So my name is Denise Dillard and before I jump into kind of the meat of my talk, I wanted to give a little bit of context of which informed how I and others work with the American Indian, Alaska Native community and how I'm approaching my talk about this phase of the research. So a little bit about South Central Foundation. So South Central Foundation is an Alaska Native owned and operated tribal health system which took over provision of all of their primary care services from the Indian Health Service in about 1994. SCF provides a wide range of mostly outpatient services to 60,000 American Indian, Alaska Native people across a pretty wide geographical area, 1600 employees comprise the SCF workforce of which 54% are Alaska Native themselves. So since taking over provision of their own health care, SCF has made very dramatic changes and what their care looks like now is very different in terms of if you visit the clinic, but part of that change has really been very important changes in philosophy. So philosophy's underlying decisions made at SCF are that health is not only medical and individual, but it's holistic and it involves the family and it involves the whole community and it involves many multiple generations. Another key philosophical change is a change from the use of terminology of patients to customer owners since the system is owned by the people that it serves. And this is important because it helps move the population of Alaska Native people from being recipients of care to being in partnership and in charge of their own care with people providing services and with other systems including the health care system. So how does this apply to research and citizen science? So although research has been going on with Alaska Native people for decades, much of the research that was done was done by people who were not native and in a way which has been characterized as helicopter research where people flew into villages, collected their data and then left, kind of never to be heard of again. The results were often never returned or they may be returned in a way which was either stigmatizing, so focusing on pathology or in ways that there was actually damage to the community and the reputation like the Barrow Alcohol Study. And this is a study where results about alcohol misuse in the community were reported on the front page of the New York Times before they were reported back to the community and if you read that article it describes the Alaska Native community as basically facing extinction because of high rates of alcohol use. So all of this history, there's a resultant lack of trust in researchers as well as federal entities that are charged with, quote, protecting human subjects. And this partly goes back to kind of ongoing issues related to treaty negotiations, those kinds of things with the federal government, but also research that has been done by entities like the Public Health Service where Alaska Native children in boarding schools where they were forced to attend were injected with radioactive iodine to take a look at the effects on thyroid cancer. So SCF, like other tribal entities, is increasingly taking over the oversight as well as the actual doing their own research. So SCF, since they took over their own healthcare, they started a tribal review and approval process where all research before it's published needs to be shared back with the community and with tribal leadership and they look very carefully at issues related to possibilities of community harm. But SCF also in 2004 created their own research department and this was done not only to ensure that the community is respected, but also so that the corporation could engage in studies which they felt like really addressed what they wanted to study, not what NAIH wants to fund or what individual researchers may be interested in. And so I am the director of the research department. I am also Alaska Native. I am a customer owner of the system and I'm also a researcher. So I wear many hats in this organization. So kind of moving on to what should, after the study, kind of an important consideration. My focus today is really on kind of two big buckets. One is on developing and disseminating results. And active involvement of participants or citizens or customer owners in developing and disseminating results is really important for a variety of reasons. One is to ensure that results are accurate and complete and I can repeatedly learn that what I may be interested in from my vantage point is really different than what other people may be interested in. For instance, we did a study looking at what people thought about specimen banking. And people wanted a lot of information of what exactly are in the tubes, who works in the bank, do they get freezer burn, those are things I never would have anticipated but we made sure we included those in our results. Doing collaborative results creation and dissemination is respectful of the dignity of Alaska Native people rather than someone who should be disseminated to or educated to and I mentioned the history of forced boarding school attendance. This is using processes that don't repeat the harms of the past and this can help build trust, kind of takes the blind off of what actually happens in research and makes it more transparent. It also helps to build capacity, which is another potential benefit for communities in terms of oversight and participation in other research activities but also gaining skills in other areas. Areas of tension that we faced in this area are issues about if, when and how to return results as well as issues related to community confidentiality. So somebody talked about this yesterday, we often when we do genetic studies, the specimens are not associated with any identifiers and analysis is typically done in research labs which are not CLIA certified. However individuals really want to know their results and frankly this, when you tell people we can't return your results because they're not from the CLIA certified lab, that doesn't make sense to people and so I know that we're in our next set of efforts, we're going to be looking at this whole issue because researchers benefit from knowledge all the time so why can't Alaska Native people or participants also benefit from that knowledge even if we don't know the full implications of that. How to best return results in a way which is meaningful and which is done in a way that is done in plain language, some of the, this is very time consuming and oftentimes it happens at the end of studies which are already insufficiently funded, often kind of beyond the rate of the funded period and so those efforts need to be supported. And then there's also ethical and social issues related to communities so you know communities can be harmed if they're identified in research but in our work some communities want to be, want to be named because they're proud of the work that they've done but you know how do we go about making that decision and then I also do want to say real quickly here a couple other things is that I want to reiterate that scientific publications are important, if you talk to community members in Alaska they feel like there's been all this research in Alaska but there's very few published studies so where are those studies, getting that information out there so researchers aren't returning over and over again to study the same things and it also helps set up the stage for future action and so in terms of action I think paying attention to what are the potential policy implications of the findings, what are clinical practices or procedures that need to be changed, I get asked that for every single study that we do and we take that very seriously and this does not mean that research has to result in some sort of change but I think to be very upfront that you know this may just be knowledge generating but what are the potential future steps which could which could lead to actual change and then my last point is really in terms of data ownership and ongoing use of data SCF has taken the stand that they own and govern all future use of data so there's kind of the tribal oversight but then also for us with use of genetic information or biological specimens we have also taken the stance that we go back to individuals each and every time because individual Alaska native individuals may not necessarily make the same decisions as what tribal leadership may make thank you