Solving Health Challenges Through Research and Collaboration

Automatic TRANSCRIPT

Let's start with. Sharon who has not been here before we usually like to struck these podcasts by talking to our guests about specifically what they do and how did they get their sort of talking to the public about how does one become professor of medicine or a division director of nephrology or interested in the research that you do. So I started in research when I was in a froggy fellow at the University of Chicago. I was motivated to be honest by a patient on dialysis who kept having bleeding into their shoulder joint that I had to actually remove the blood for her to be able to use her arm on a weekly basis, and this was due to a rare disease that patients on dialysis get that deposits in the bone called amyloidosis. So that made me start doing research on bone learning about bone I worked in someone's. Lab and then when I came to. INDIANA. University in thousand hundred two I came really because of the strength of the Bone Research Group at Indiana University? Not Necessarily in the nephrology division from there I have held a lot of different administrative positions. I am kind of an organizer and get things done type person. So it comes pretty naturally to be able to put all that together. I could say I've been truly doing. Translational, research since my fellowship, as I hadn't during my fellowship, a clinical research paper and a basic science lab paper published in one year. So sometimes I feel like the word translational isn't really new and novel, but I'm happy that people are finally understanding that when you do something in the lab, you ought to be thinking about who the patient is. That would benefit from this at least some point in their life. So can I get you talk a little bit more about that like what do you? What do you think translational research is because I'd agree with you it it does seem like one of those things that people are treating soften is it's a new thing but it is it. So how what does it mean to you? So it should mean that there ought to be a potential and the back of your head. As to where this was going to go at some point in the future I truly believe there is an important area for research just to do research to understand, for example, and identify new and novel gene, and what does that gene do on the other hand translational means that you actually go from a patient and you work backwards to try to figure out what makes that patient tick? What makes them have this? Disease, what makes them prone to this disease? Both of those kind of approaches from science perspective are absolutely needed. But the whole emphasis of the he sl is really to actually take discoveries into humans and overtake humans back to bench discovery so that we improve their health to see this as something that doesn't do that. There needs to be a focus or we just sort of doing more no I think the difference between. That and very focused research is that in order to really cover that spectrum, you have to have collaboration you have to actually have other people who can work on different pieces of that Longitudinal plan again from patient back to bencher bench to patient, and so it is hard for someone to do all of those facets and so you have to have this ability or desire to get there and you need to collaborate. And that's really what the chess is all about. It creates an infrastructure that people can go to so that they can understand how to take that part that they're doing in that trajectory and make it happen. Can you give me some hard examples of some of the work for structure talking about? Yeah, I mean this is I. It is absolutely fabulous and I give talks and visit places all around the country and. We are truly one of the best and most advanced CPS I in my book from start to finish, you have an idea you think might actually be a drug down the road. We are working to try to figure out how we can actually benefit people who are not sure if it's going to be good. So connecting them with the right people to understand drug discovery, we then want to know if you're doing. An animal work is that gene that you're studying that protein actually present in humans because there's a lot of discrepancy in animal models of human disease, and so we have a giant bio bank samples that people can gain access to to actually measure the DNA and try to understand the Hamas between an animal and human, and then if you do have something and you have an idea and you want to implement a Clinical Research Study, do you need to know how many patients you have? So we have a connection where the Reagan streep data set to help to feasibilities. Do these people that you think exist really exist? Is there something unique about them that you need to know who the people are that you want to study, and then we have a pool of trained research coordinators and infrastructure setup to actually conduct clinical research and? Then from there, we have an ability to help people learn how to communicate how to publish how to write a grant. Harman's all these other things through our professional education opportunities the whole beauty and the fun of research is that it's never a dull moment. So every day you think you're going to be studying this and something send you to a tangent and you go wait a minute maybe I should be doing that. And that's how you end up needing collaborators and resources and methods and infrastructure to learn how to do it. Otherwise, you lose those tangents and discoveries are errors initially and someone takes a different look at it from a different viewpoint and they turn it into something really positive. So the CY is an effort that involves just more than Indiana University School of Medicine Right? Absolutely. So it's really Notre Dame purdue IU Bloomington. And many other hospital systems as well as the medical student campuses. So it it really integrates everything and it's very fun to actually learn what people are doing at different institutions and to actually get people excited and have a pathway forward to maybe something that isn't at their institution. Bring it back to what the research is that they're doing. So Sarah I'm not gonNA ask for full introduction. I think you may be the. Frequent. Guests on our podcast dates. So if the audience is familiar with anyone, it would be you but I would love to hear a little bit about how you became involved in community and translational research as well as what you see is the distinction between say clinical and translational sciences and community in Translational Sciences my research has always focused on vulnerable populations and health equity related issues and started with geospatial concentrations of poor health outcomes among adolescence and I was doing a project that was enrolling team girls on the West Side of Indianapolis and tracking them, and when we recruited from the clinic for the study just to give you an idea, we were using blackberry pearls. So that dates long ago this was. One hundred percent of the girls we had approached agreed to participate so much so that the I R. B thought perhaps the protocol was coercive because we were offering free cell phone service while we attract their locations and they were wondering if even after our main criticism with this grant to the NIH, which was like this grant isn't possible no never is going to let you track them Things have changed since I started asking those questions in any case my point is, is that when we brought it into the community because we didn't want a clinical sample because it can be quite biased for an adolescent population, those who are seeking healthcare, we were not meeting our enrollment targets and so what I learned after a lot of errors that engagement with the community in this case our target population of teen girls on the West Side we realized they weren't seeing sort of the Ir be approved flyers. replastering everywhere. That, there were all kinds of things that we needed to reconsider and it had nothing to do with the protocol itself. So the science was valid. There wasn't anything that was sort of keeping them necessarily from participating in terms of the incentives or what we're asking them to do. It was that we were not effectively engaging with them and as part of that as well as some I think innovative at least at the time collaboration with a faculty member from Herron. School of. Art and design in Santa Matsu we sort of employed this human center design research approaches sort of our how community engagement in any case because of that sort of experience for me personally as a researcher I learned the value of engagement and really beyond just meeting recruitment targets to getting to something much more meaningful from the participant's perspective, and it's just grown from there. So it has taken a lot of different trajectories for me and my own research relating to data, sharing partnerships to what's. Now Research Sham the patient engagement core to various community engagement in between but I guess where my role now as associate Dean as well as CO director of the CSI, plays in Israeli extending that translational spectrum in with the community and back rights as a bidirectional relationship, and so it's extending those collaborations to stakeholders in the community. My definition of team science and sort of that collaborative space is not restricted to individuals within the academy and really absolutely needs to include community folks at all. Levels of the translational spectrum. So this is not just from like clinical to community in my book it's you know community engagement even within the basic science from.

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