we did yesterday. We have microphones. We have e-mail and online strategy. Please do avail yourselves of them.

I am going to turn it over to Sue Brown Trinidad. She is a research scientist in the Department of Bioethics and Humanities at the University of Washington. She is going to moderate our panel. I will say that she focuses in her research on ethical, legal, and social implications of genomic research. She also is interested in studies, communication, and decision making, and health care settings, health equity, community-based participatory research, and more. She is a terrific thought leader and member of our planning committee for which we are grateful. I will turn it to you. Thank you, Sue.


Dr. Susan Brown Trinidad (Moderator)

DR. TRINIDAD: The first thing is always, I apologize if you cannot see me. But I also saw that girl fall down at the Oscars. It is a trade-off always. We have a lot of work to do this morning before 10:45. I know my panelists and thank you all for being here. On behalf of the Planning Committee, thank all of you for being here and all of you out there as well.

I do want to point out there was a comment on the website last night saying, “Why aren’t there any patients up here?” I am pleased to say that today we will have patients participating as panelists.

Knowledge generation and care improvement. The research world. I think there are a couple of big trends that are converging to bring us toward a direction that looks more like progress on a lot of the things that most of us in this room care about. Translational science and the research space. There is a lot of talk right now about how we move from the bench to the bedside. There has been less discussion of where patients fit in that translational process. I am hoping we will talk a little bit about that today. We will look at comparative effectiveness research, patient-centered outcomes. All of those things I think are beginning to grow in the direction of a critical mass to actually get patients involved in a way that is more reciprocal than what we have seen in the past.

One way of framing what we will be thinking about and talking about this morning is, what do we know? The first question is, who are we? We have been in the research realm and historically a pretty limited set of people. There was some talk yesterday about culture and the important shaping that culture has that can sometimes be invisible to us because we are in it all the time. That definition of who we are when we are thinking about what we know is starting to get broader. And I think that is a really positive development and I think bringing patients into that definition of “we” is an important piece.

The other issue is what we know, what do we know, how do we know that we know it, and what counts as knowledge. I come from the bioethics area. I have training in philosophy. All of these questions about epistemology, how do we know it is knowledge, what counts? Those are actually important issues from a policy standpoint. Whose input counts?

I just came back from Bethel, Alaska. People in villages of fewer than a thousand people. Their ideas about what their health priorities are finally beginning to get some currency in the people who are providing services. That is important and that is an important change.

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