This conversation explores the intersection of disability advocacy and medical education, highlighting the importance of collaboration between medical students and The Hive's disability advocacy community. Dr. Nora Newcomb discusses her journey in advocating for disability inclusion in healthcare, the development of educational resources, and the significance of feedback from advocates. The dialogue emphasizes the need for a patient-centered approach in medicine, the challenges faced in research, and the hope for a more inclusive future in healthcare. Special Thanks: members of the research team that are/were USF-affiliated: Abigail Weisse Shannon McCarthy Aishwarya Vuppala Franklin Sun Kyle Lien Rebekah Johnson Dr. Marjorie Fitzsimmons Dr. Andrew Galligan Dawn Schocken Dr. Jennifer Caputo-Seidler Shirley Smith Dr. Vinita Kiluk We would also like to thank NICHE Med for their funding and support And a huge shoutout to The Hive advocates: Chatequa Pinkston Tiffany Pervis Carrie Hoeh Natalia Rijos Tres Whitlock Chapters 00:00 Advocacy in Medicine: Becoming the Change 02:46 Collaboration for Disability Inclusion 05:47 Revitalizing Medical Education 08:45 Empowering Future Physicians 11:42 The Role of Personal Experience in Advocacy 14:15 Feedback and Iteration in Medical Training 17:12 Understanding Patient Needs 20:05 The Adept Care Protocol Explained 23:00 Shifting Perspectives in Patient Care 26:03 Paternalism vs. Patient-Centered Care 28:51 Research Gaps in Disability Studies 31:52 The Importance of Community in Medicine 34:34 Building Confidence in Medical Practice 37:31 Creating Lasting Change in Medical Education 40:25 Personal Journey of Advocacy 43:24 The Future of Disability Inclusion in Medicine 46:27 Final Thoughts and Hope for Change Transcript: Speaker 1 (00:00) I think there's a desire to want to wait to find an advocate in your institution to kind of glom onto to work with. If you're not finding that person, that means you are that person. Speaker 2 (00:13) love that. Hi, community and welcome to talking inclusivity with the hive. ⁓ If you don't know the hive is a nonprofit Tampa based nonprofit that is building ⁓ the first truly affordable and inclusive housing for adults with disabilities. A part of the mission of our community is amplifying the voices of advocates ⁓ that have disabilities as well as. organizations in our community that are being amazing allies and ⁓ moving the missions of the disability community forward. And so today I am meeting with Dr. Nora Newcomb. Hi, Nora. Thank you for joining us. And the reason we're so excited and we wanted to invite Dr. Newcomb on is because ⁓ in December of last year, USF Medicine, ⁓ reached out to us and asked the Hive to do a collaboration with ⁓ their medical students, the Hive advocates. And so we wanted to share about what that collaboration was about. ⁓ again, just ⁓ really be excited and share what USF Medicine is doing and ⁓ what they're doing for the disability community. So we're just gonna jump into our conversation. first, and I literally didn't... I going to do this, but I'm sure you assumed. Could you introduce us to you? Speaker 1 (01:46) Absolutely. So hi, everybody. I'm Nora Newcomb. I have my MD and I am currently a resident. So I am a doctor in training. ⁓ Other than that, to give a brief visual description, I am a white woman with long brown hair, wearing more makeup than I normally do, with black and white glasses, a red shirt and a flower necklace. I got involved in disability advocacy about five years ago. ⁓ and have been involved at the national level with Medical Students with Disability and Chronic Illness National, which is a student-driven organization. It's now a 501c3, dedicated to inclusion of disabled learners in medicine, but also the advancement and inclusion of ⁓ disabled people in medical spaces and improving education for high quality medical care for people with disabilities. Speaker 2 (02:45) So. Speaker 1 (02:46) So, yeah, I'll say, and we got to know each other through the work that we did while I was still at usf as a medical student, which just a little brief disclaimer. I'm speaking for myself. I don't speak for us. I don't speak for any other organizations. I just speak for me. ⁓ But we got to know each other for us. When I was working there as with a project through niche med. So, niche med is a grant that we were lucky enough to receive. through a DMD and it's a national initiative through the American Academy of developmental medicine and dentistry to support the development of disability inclusive curriculum specifically curriculum that is inclusive of ⁓ people and topics related to intellectual and developmental disability in medical school curriculum. And then there's also a dental version because it's known. that that is an area that is majorly lacking. So we met because we'd received funding through Niche to work on our curriculum and we reached out to you because we're working on videos. So I'm so happy that you've had me, you're having me here and I can't wait to talk more about our project. Speaker 2 (04:03) Yeah, I am just so proud of USF for recognizing the need ⁓ to create spaces and to create ⁓ assessment processes for doctors to better the experience of individuals with disabilities. ⁓ My son, he's 31, but ⁓ we have lots of stories. ⁓ from moments in, you know, at doctor's appointments or hospitalizations and things like that where ⁓ if there would have been more ⁓ education and awareness, ⁓ those moments wouldn't have been so traumatizing. so, and also we did have many of our HIVE advocates come and speak at round tables with some of the medical students and they got to share. those experiences, which I loved. And I just loved how empathetic and really leaned in the medical students were in listening to every story and wanting to, you know, just really express that they want to make a difference in that space. So, and I remember one of the advocates leaving and she told me, she said, I have so much hope now in, in healthcare. And it was just from, from those panel discussions and those round tables. So, ⁓ That's it's a big deal. So I kind of feel like you kind of already spoke a little bit to this, but ⁓ what personal or professional goals do you hope that the disability inclusive medical assessment videos will achieve in the broader medical community? Speaker 1 (05:47) So to take us a little step back, these videos are part of a larger effort that we're attempting to do to basically revitalize our disability curriculum. So USF historically, our med school had a robust disability curriculum that was spearheaded by Dr. Lori Woodard, who's a fabulous advocate and has been for her entire career. ⁓ However, when she retired, a lot of it went away, which is just the nature of things when the nature of how it is, is a lot of medical institutions where when you have a something that is considered a specialty topic, which I'm using air quotes now because disability is not a specialty topic, but when it is something that is championed, when that champion leaves, things tend to fall apart. And so our hope is not to create from the ground up. but to build on what we already have and to bring it up to where it was and hopefully a little more. So this is being done by a team of faculty and students. And we're basically trying to be as helpful as people will let us and get our curricular initiatives in where people will let us. So it's an ongoing collaborative effort. Part of that are the videos that we're talking about. So we're in the process of creating with our niche funding a series of videos that will show basic medical cases, basic medical interaction between a physician and a patient with a disability ⁓ in an attempt to highlight. both how normal that interaction should be and how standard and how much it is like every other interaction we're taught to have and ways in which we need to be careful and considerate on top of that in the same way we learn about patients from any walk of life. A large part of modern medical education is done through simulation. ⁓ model patient exposure, is somebody with a lived experience presenting as themselves with lived experience for a medical student to talk to and videos like this. It's very common to have medical students watch a video and then pair it with something, whether it's an exercise, a model patient case, an opportunity to reflect. And we're going to get to what that will be. We're still working on where this will fit exactly in the curriculum. But our hope is that these videos will seek to both normalize and educate ⁓ these types of encounters and experiences for our medical students. Because realistically disabled people are 25 % of the US population, if not more. And also it's a lot of who comes into healthcare and we don't do a great job in general in medicine of teaching. how to take care of disabled patients. Our goal is that these will be shown to medical students at a time where they can take their skills and take it with them into the clinic. And it may be that they're shown them multiple times. It may be that it's paired with panels like ones you're talking about or other initiatives, because there's this idea of ⁓ repetition in medical education. It's a very important tool of spaced plant repetition. And so the idea is to hit people with the same topic over and over and over and over again in little bit different form with the hope that it'll stick. Speaker 2 (09:20) So good. So you kind of mentioned this, but I want to talk about it more about your generation because I think that that's something that's significant. But ⁓ medical education has historically had gaps in disability inclusion. ⁓ How do you feel your generation of medical students is uniquely positioned to address these gaps? And what have you pers
