 And I guess just by way, as these are getting set up here, I'll just start by thanking the organizers of this conference. I've already been really inspired by the conversations that have happened this morning. And I'm grateful for a chance to explore this with the folks in this room today. Ostensibly, this section is about governance, but there may be some blurring of lines in terms of what I talk about and some of the other topics that come up today in this afternoon. And I can always skip the slides. And you could, yeah, I changed it a little bit, but we can just improvise. Thank you so much. OK, so as Sarah said, I'm from PCORI. I'm here to help. I'm going to talk to you a little bit about the notion of citizen science as we think about it through our initiative that's called PCORNet. I apologize, there's probably a couple of acronyms I'll throw in there. That's one of them. It's the Patient-Centered Outcomes Research Network. As a backdrop, this is an infrastructure development initiative that PCORI has funded, again, or the Patient-Centered Outcomes Research Institute. You can see why I shortened that name. At its heart, PCORNet is really intended to blend capabilities of health systems, health care delivery systems, such as Kaiser and the VA, and federally qualified health centers and many other academic health centers, with the capabilities of patient-driven organizations. So we have advocacy organizations that I've often partnered with. I heard about CENA this morning, partnered with researchers. All of this is in support of a retooled national ecosystem for research. And HALAPA is brought forth another great example of what we call the PPRN this morning. So we have all of these great people working together on an ecosystem for research that is hopefully far more efficient and effective than the current system and much more patient-centered. And we have a number of research networks in existence today. They have kind of helped move us forward. Things like the Clinical and Translational Science Awards certainly have helped make, I think, big sea changes in terms of how research is organized and carried out, kind of in the backstage, if you will, in terms of contracting and mechanisms that support research. And I think through PCORI's early existence, we've been around for about four years. We've had patients engaged in research shoulder to shoulder with the scientists. And I think that's creating some both incremental and large scale changes. So we are happy to be able to harness patient engagement, participant engagement, citizen engagement, and blend it with this data-driven moment that we're all experiencing. We have 29 networks. Again, two of them are in the room represented today. They are all part of what we're calling phase one. We have these clinical data research networks, as I mentioned, the health system-based. We've been up and running for about a year. We are anxiously awaiting the opening of phase two, which will run from October 2015 to 2018. Each of the networks that we have involved, we have 29 networks. They were all invited to bring in a patient cohort of their choosing. This could be everything from the very rare conditions, the rare genetic disorders, rare epilepsy, to very common conditions such as breast cancer and diabetes. And what I think is really cool about this is we've been, we talked a little bit around the margins this morning about the need for understanding what works in terms of governance and involvement of participants, co-creating research with scientists. We are gonna have the opportunity in PCORnet for some natural experiments. You can see from this slide, we've got three different models in play within our patient-powered research networks. I won't belabor this too much in the interest of time, but suffice to say, we have the ability to look at different levels of patient and participant involvement at the governance level and see what difference that makes in terms of how people feel about the research at the end of the day. Does it increase recruitment? Does the research feel different? Does it feel more patient-centered? So we'll be able to really explore that in a more systematic way than I think we've been able to previously. You can see that these are some of the examples. We have patients that are PIs or co-PIs as Holly is and Sharon is. We have them as key advisors. We have them on advisory boards or other kinds of, kind of governance councils that are more advisory to a PI or a leader. They serve on different task forces within the larger community of PCORnet. And then they also serve a very important external role as ambassadors and connectors to other disease organizations. They serve as communication specialists and extenders and they're really helping extend the concept of PCORnet out in the larger research community. And I think that as we think, some of the issues I've heard discussed this morning really made me think that citizen science and patient engagement are really sort of two sides of the same coin. Obviously befitting PCORnet's funded projects, not just in the program I work in, which is PCORnet, but all of our projects involve patients in governance. We are assessing that impact. We are able to decide what research topics to study. What happens at study sections? We have patients on our study sections. But for PCORnet, what I think is interesting is it's pretty far upstream in that we're building infrastructure, which is kind of a kind of arcana to a lot of people. They might understand a trial, but they don't necessarily understand intuitively why new research infrastructure is needed. And so really there's only, I would say a minority of patients that are attuned to this, to the shortcomings of the current system. Maybe when you express it as the fact that only 5% of patients are represented in clinical trials and those are highly specialized, that kind of gets their attention, but this notion of a different infrastructure is I think still a little bit opaque to a lot of people. So we have to deal with this learning curve. We talked about challenges and opportunities. I like this made up word called challenge tunities when patients are co-creators. When do they kind of transition or do they transition from being a patient to being a researcher? What are the implications of that? What should the researchers do in terms of changing how they behave? We were talking, I was talking with people at the introduction about how researchers need to become vulnerable and that's very uncharacteristic. Where they are expected to be among the smartest people in the room and be the smartest person in the room sometimes. And then to say in front of a patient who's gonna potentially be in your project, I don't know the answer to that. That involves kind of taking off a cloak that you're probably not, that doesn't always feel that comfortable. We have a lot of asymmetry issues, some of which were brought up this morning around power, information asymmetry. What do we do to enable really good strong communication and kind of bridge the gap between these two different languages that researchers and non-researchers speak? We've heard some interesting things from some of our investigators that I've worked with where they feel like they're bothering patients with methodologic details that they shouldn't have to worry about that. And I would submit that that's still relatively paternalistic, maybe not even relatively. So we need to think about letting people choose and I think citizen science is a great example that letting people choose what to be involved in. We have opportunities to have the patients decide what strategies are viable. We're doing some crowdsourcing on research ideas in some of our networks which is I think a really cool opportunity. I think this is my last slide, I'm just kind of teeing up some provocations and insights for further consideration this afternoon. Governance in research is often about data. Who owns the research data? Is it the patient who gives it? Is it the health system who kind of soaks it into their EHR? Is it the researcher? I would say it's probably not the researcher but they might feel differently about that. So I think there's still some big thickets around governance to tackle. Don Burwick has a pretty famous paper in the realm of patient-centered care that says nothing about me without me and I think that there might be some good analogs for patient-centered research or citizen-driven research. Already talked about kind of the opacity of research and the data privacy. We've had questions come up about should we go deep with a few patients or go broadly with a lot of patients and I think that there may be opportunities and pros and cons in both and then just finally the notion of rebalancing the scale such that the individual benefit and the societal good are equalized to the extent that we can. I think that's my last slide so I'll leave it at that and thank you so much.