 Hi. I do have slides. This has been a really interesting day and I've learned a lot. It's been a lot, frankly, better than I thought it might be, so thank you very much. Just have to be honest about it. And many of you know me and a lot of you don't, but I've been involved in working with research, the research system, researchers itself, and programs since 1991 after shortly being diagnosed and treated for cancer, and primarily in the cancer world but also in some other diseases. So I've always used a different word which is also not good as a patient advocate, but citizen science, I'm going to explain a little bit too, it also doesn't quite resonate and frankly wasn't something that I had heard until very recently. So I just thought I would go through and kind of give you a little bit of background. When we talk about patient advocates, we usually have to define what that means and in the context that we're putting it in, which is what I think we're also going to have to do if we use citizen science. There are different types of patient advocacy. There are different reasons that individuals and organizations and groups form. They usually have a core reason for being in one of these five puzzle pieces. And usually it's one of the four on the outside that they get started with. It can be everything from direct patient support, which is probably the most accurate definition of the word patient advocate. That would be services, resources, etc., things like that. It can be political advocacy, which is lobbying, making sure that people have protections that we need, that regulations get set for things that are important to the patient community. It can be fundraising and there are organizations that are set up and foundations certainly specifically for that. There are some cases and some diseases, watchdog advocacy and a lot of people think of AIDS immediately when you start using that kind of term, but that's where you're really looking at issues that need to be put on the table and may not be within the traditional roles. And so we shed light on things. And then research advocacy or patient advocates in research, which is where we actually get actively involved and integrated into the research process. And that is at many different levels. So I'll try to explain that. Our role is that we, and I'm obviously involved in that, I started a pair of patient advocates in research, which is an international network of primarily cancer patient advocates, about 250 of us that are involved in research in some way. And we partner with scientists and I have every word there and that's actually true because there are many different ways to be involved. And that can be anything from being on grant reviews, which is usually where it starts with people, to getting involved in programs both on a national and sometimes international level of setting programs and policies to actually being involved and actively participating in some type of research program itself. Projects, protections and patients. So to give you just a couple very short examples, although there's a lot that could be said about them, I was involved in helping get the NCI Spore programs actually funded and then started and then I participated in the program itself. Spores are the translational research program that was started about 23 years ago at NCI. And we're focused on eventually, I actually had a grant that was called the Patient Advocate Research Team Program Grant and that came from lots of development along the way. But we actually helped establish patient advocates that were working with the researchers in each spore. There were about 62 grants and 24 institutions and 14 different cancers at that time. So that's one example. Another example is with through the CTSA Sentinel Network that Nick mentioned earlier today. I was involved in that as well in helping train community health workers who were the ones who were going out and implementing the questionnaires in the six locations that were collecting the data that the Sentinel Network was interested in. And the real issue there or the real focus I guess that we have is that we are interested in results for people. And I think that's really important to remember. We talked about most of the morning of the benefit that people feel towards science to get involved. That's a reciprocal thing. There's a reason people get involved and want to help science out. It's because they want science to help them. And so I think one of the things that we have to remember and you have to excuse me, I'm going to use the M word because I have a marketing background as well as communication and strategic planning and all sorts of things in my computer world is with them. Okay. How many people know what with them means? Okay. Very few of you. Okay. It's what's in it for me. It's it's human nature. Okay. It's actually they talk about it in psychology classes. They talk about it in marketing. It's everything and everybody who came into this room this morning thought that what is this meeting? What am I going to get out of this? Is this worth my time? Well, guess what? That's what every researcher thinks when they're thinking about working with communities and engaging them. That's what the individual patient thinks who's going to be on the study. That's what the individual group thinks. That's what the community thinks. This is where I think we need to start maybe our discussion of what do we need to do from an LC perspective? And how do we make sure that the WIFM is taken care of for all of the stakeholders? Okay. And of course, challenge is up here because that's what we do. That's our role is to challenge the thinking and the process and make sure that it's going to get those results for people. So that leads me to talk about citizen science. I don't I'm so glad you guys are enthusiastic about this and you want to incorporate citizen scientists in your work. I can guarantee you the majority of researchers outside of this room do not feel that way. I don't think many of them are going to feel comfortable calling us citizen scientists. Now, I'm not saying there's a I don't know what the better term is and we have the same problem as I mentioned with patient advocate. That's not a good term either. But we have to come up and the public isn't necessarily going to understand this either. I think if you look at it from an environmental standpoint, that makes a lot more sense. But when you start talking about biomedical research, and the type of science that goes on there and biology and and all of that stuff. That's a little bit different. So I just bring this up to say that citizens aren't always patients, although I'm every time you go into a doctor's office, you're considered a patient, whether you're healthy or not. So you know, at one point in time, all of us are patients. There is a different perspective. They're definitely citizens aren't necessarily advocates either. But we are actually the same people. So I think we have to keep that in mind as well. So I'm using this as my platform to talk about some of the issues and I'd be happy to go into any of my examples. But this comes from years of working with the research system. We have to stop siloing things. And that actually means the ethics community as well. I love many of you. But sometimes ethics can slow things down. And sometimes that's actually important that we slow the process down a little bit so that we're thoroughly considering the issues involved that people may not be considering. But we also but sometimes the discussions become insular. And don't actually engage the rest of the research community that we're supposedly doing this for and with. So I think that's really important. Relevance is a really important piece here that we haven't really even talked about that much. We've talked around it but not necessarily brought up the word. So relevance is important about the research that's done. About the way ethics interacts with the community with the research communities. As well as the public. And it's also about irrelevant. And that's with the work that we're talking about with citizen science or within the research itself. We have to approach ethics in new ways. And we've talked about some of that. And then we've also discussed the last point which is as a citizen. Scientists we want to be useful but we don't want to be used. And that goes for the communities as well. And we have talked a little bit about that. And frankly there have been abuses that we know about. And all of them weren't 50 years ago. Some of them were last year. So we have to keep that in mind as well. Words really do matter. And this is one I hope we get rid of forever. Because the way that we hear about this and the way research talks about it is the top line. The way patients hear it is the bottom line. Okay. One's a noun, one's a verb. And that's important to keep in mind as well. So we have to remember who are we doing clinical trials for? Who are we doing basic research or at least translational research for? And the informed consent process as John brought up has a lot of room for improvement. And it may be time to go ahead and start from scratch so that we can help IRBs do the important job they need to do. We can help patients understand it. We can help the researchers who need to process the whole approach. But do it in a way that actually makes sense again for patients rather than becoming what I call CYA which is cover your aspirations as an institution. So my last slide is on can we please focus on the future? And I saw this coming out of an airplane in one of my connector flights and I thought that's it. That's what we need to be talking about. There are, you know, DNA and data are here. They are out there. This is a bank talking about that in their ad to promote their bank. Okay. This is the world that we're now living in. One of the things, you know, to actually think about which may sound totally bizarre, but it's not going to be too much longer. They're testing right now 3D tissue from 3D printers. There's going to be organs that are going to be developed that way. What happens when we can clone humans that way? I mean, these are the kinds of things as far as future stuff that we need to be thinking about as well as crowdsourcing and all of those kinds of things. And I just, I guess one of the things to leave with is that research in and of itself is not necessarily progress. And I think that the LC community is so important because we have to be able to help research make the progress that the patients and the citizen scientists are looking for, because that's why they are supporting research and science and want to be involved. So I think I'll stop there. There are lots of other parts that we can do with the panel. Thanks.