 Good morning. Thank you for getting me set up. I'm Laura Cleveland and I'm a patient advocate research. I came to this Advocation from an education background when I was diagnosed with chronic lymphocytic leukemia Gosh almost 17 years ago. I was pregnant with my now 16 year old son so So what do research advocates do? I didn't purposely make this all small, but I Just wanted to show you at please don't even try to read it I just want to show you some of the app the activities that patient advocates and research are Involved in everything from I currently serve on the NTI CIRB right now I'm involved with the cooperative groups. I'm involved on a local level with our local academic Cancer Center all kinds of things that have happened through the last 10 years in my My experience But the cool thing is is that until About three weeks ago. I Didn't realize that I was also Laura Cleveland citizen science scientist so When Charlize called me and asked if I'd like to participate in this meeting I Had to tell her I'm not exactly sure what a citizen scientist was this is a term that in my circle of Patient advocates and research is not it's not a term that is is well known But I'm excited to bring that back to them and to share with them. What exactly it is that We're trying to incorporate here So at the end of the day, we're talking about what it is We want to share with our communities at the end of the day as far as Elsie goes as far as research goes So what so I want to kind of clarify what it is that patient advocates do What we are and what we are not In the scientific world That we are peers with our And I'm talking mostly in terms of Researchers who are in the academic field We are peers with them, but we're not necessarily colleagues and in that I mean that we are not the person who's going to step on their toes Or be in conflict with them as somebody who is also in the academic world and Can Ruin relationships or Disrupt relationships, especially in academia that we're collaborators We're not necessarily kill joys that we bring to the table different ways of doing things But not necessarily as we can't do this because so we want to collaborate We're the independent voice this kind of goes with not being a colleague We are a voice at the table and this is where I think we can really with the NIH and with Elsie Really incorporate That independent voice that says hey wait a minute. Can we try this? Can we do this can we figure out a different way of doing? Something that's not typically done right now We've I've observed and have friends who have changed Protocols in the way that certain agents are delivered in the cancer community Just by asking a simple question. Can we do with a lesser dose? Can we do with Less visits less bone marrow biopsies More of something else We're a voice for the patient community Yesterday, I think Deb Collier talked about we are not self-seekers. We're not just there to Present my own case our own case, you know, I have this this disease and I want this this this kind of Treatment for that we speak for the entire patient community So practical applications for the NIH community for citizen scientists. It's not about Just the research it's about people especially when we're talking about health outcomes and What the research means to individuals and their families at the end of the day study summaries in addition To Consent and I'm talking about study summaries at the beginning of When you're presenting somebody a consent form Having a study summary that talks about what it is and lay language what they're going to be doing instead of the 20-page consent form that You know, I I believe that people are already Impaired when they hear the word cancer they're impaired when they walk into a room with the white coats and Have to make these decisions with their families about whether they're going to participate in research or not So how do we get the word out about? study summaries about clinical trials and How do we protect our communities? whether that community be a Group of patients with a certain disease whether it be a geographical community and Then study result summaries Deb Collier who also spoke yesterday as you can tell we have a close working relationship within Several arenas but mostly within the cancer cooperative groups We want to know the good the bad and the ugly of those things Not just the rosy picture of what this study or what this agent or what this drug is Means to us. So here we have Clint Eastwood the good the bad the ugly and Encourage the publication of all results. This has become a real issue of getting these things published It is our responsibility. It is our duty. It is our Yeah, I can't think of the word just got the brain drain it is our Absolute Under the umbrella of LC to get that out citizen science Also includes using language that is understandable to our community so as a member of the CIRB a lot of the Protocols that I look at I focus on the informed consent and it's become as I've served on this now for almost three years It's been my heart's desire to really see that we bring this language down to a Readable level in plain language that anybody that comes to the table who's considering Participating in a clinical trial that they can understand that enough to answer reasonable questions about what it is that they may be taking That they may be participating in Educate why results are important We talked a lot about education yesterday pearl. I know you mentioned it quite a bit Educate why the research is important getting the information out there encouraging Change when things don't work. We've been operating under the same type of system for a good 25 years if not longer and I mean 25 years ago now given out I grew up in a rather rural area I still have we still had a party line at our house a Party line now we have cell phones. I mean With all the technology technology that's changed with the way that research has changed with the way everything has changed Let's encourage change was that within this community as well Let's not hunt with the same old dog. Let's encourage new methods and strategies and designs and let's Learn from our mistakes and to make things better Thank you Thank you very much and now our next presenter will be Denise Dillard from the South Central Foundation