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Join us as we welcome Dr. Fauzia Riaz, Samira's oncologist, who believes in treating the whole person—not just the cancer. In this episode, we explore survivorship care: What does it truly mean? What insights does a thousand-person study reveal about different cancer survivorship care models? How can oncologists optimize treatment plans to improve quality of life for survivors? And what gaps must care providers address to ensure lasting, meaningful impact? This episode features the following PCORI study: Quality of life among cancer survivors by model of cancer survivorship care by Holly Mead.Your Cancer GPS is here! Step-by-step breast cancer maps based on what others have gone through and what oncologists recommend: https://mantacares.com/pages/new-see-how-it-works Sound Bites"You're helping me live and thank you for saving my life.""It's important to look at the emotional and psychological impact.""Survivorship is recognizing that cancer care extends beyond treatment.""Quality of life is influenced by emotional and psychological factors.""Survivorship care should be integrated from the beginning.""We need to think about how we're delivering cancer care.""Treatment optimization is going to be so important."Chapters00:00 The Journey of Cancer Care09:59 Understanding Survivorship19:50 The Impact of Treatment Models30:08 Research and Future Directions in OncologyKey Highlights:- Being attentive as a physician involves more than just careful monitoring during each step of treatment; it also requires providing support and compassion to the whole person you're treating.- The goal of survivorship is more than just surviving; it is to thrive and lead a high-quality life moving forward. There are two main survivorship care models from the study we reviewed, post-survivorship treatment and oncology-embedded survivorship. Each survivorship care model has their role.
In this episode of The Patient From Hell, host Samira Daswani speaks with oncology nurse Joshua Carter about his path into cancer care, shaped by personal experiences with family illness. They explore the differences between palliative and hospice care, the complexities of pain management, and the vital role nurses play as advocates. Josh also discusses misconceptions around pain medication, the promise and challenges of e-health tools, and the often-invisible workflows nurses navigate daily. He shares practical advice for patients, caregivers, and fellow clinicians, emphasizing the importance of early palliative care and being a bold advocate within the healthcare system.About Our GuestJosh Carter is an Oncology Nurse at Stanford Women's Cancer Center. His entire 17-year nursing career has been in oncology, with inpatient, industry, and outpatient experiences in Cleveland, Chicago, San Diego, and San Francisco. Josh holds undergraduate degrees from Kent State University and Ohio University and is currently on track to complete his Master's at the University of Michigan School of Nursing this Fall. He is a certified Oncology and Breast Care Nurse. His interests include Nursing Innovation, Digital Health, Patient Advocacy, Patient Education, Patient-Centered Design, Healthcare Improvement, Quality, and Implementation Science. With his interests in Healthcare Quality, Josh is currently a Site Assessor for the Michigan Oncology Quality Consortium. Josh has spoken at the National Oncology Nursing Society Congress and Authored Chapters of Oncology Nursing Society Text Books. Josh has been involved with research for caregivers of Cancer patients and has helped in the launch of newly approved cancer treatments. Josh has experience working on a cancer care delivery team at ASCO and has been awarded the DAISY Award for Extraordinary Nurses. Resources & Links:This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features the PCORI study “A Stepped-Wedge Randomized Controlled Trial: Effects of eHealth Interventions for Pain Control Among Adults With Cancer in Hospice”Sections00:00 - Journey into Oncology Nursing03:22 - Understanding Palliative vs. Hospice Care07:04 - Pain Management in Cancer Care10:23 - Pain Management Strategies and Misconceptions20:32 - E-Health Interventions in Pain Management23:19 - The Complex Workflow of Oncology Nursing27:48 - Quick Tips for Patients and CaregiversConnect with Us:Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on instagram, facebook, or linkedin @mantacares and visit our website at mantacares.com for more episodes and updates.Listen Across Platform:Website: https://mantacares.com/pages/podcast?srsltid=AfmBOopEP5GJ-Wd2nL-HYAInrwerIVhyJw67salKT-r9Qb_gadBvbHie YouTube: https://www.youtube.com/@mantacares Spotify: https://open.spotify.com/show/6gM1GxDBUgXrHwlO0Zvnzs?si=9edb8680461d4eaa Apple: https://podcasts.apple.com/us/podcast/patient-from-hell/id1622669098 Disclaimer:All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.This episode was supported by an award from the Patient-Centered Outcomes Research Institute.
Episode Summary:In this episode of The Patient from Hell, we sit down with Samira and Dr. Samantha, two storytellers who delve into the power of personal narratives, cultural identity, and representation. They share their experiences navigating different spaces, finding their voices, and embracing authenticity. Whether you're interested in storytelling, personal growth, or the intersections of culture and identity, this episode offers deep insights and inspiration.About Our Guest:Dr. Samantha Siegel is an onco-pcp and survivorship physician at Kaiser Permanente. She has survived relapsed/refractory Hodgkin Lymphoma, including an autologous bone marrow transplant in June 2022. This has made her passionate about integrative oncology, AYA survivorship, longterm toxicities, returning to work after cancer and more. Dr. Siegel is the cofounder of PCP-ONC CARES program, a longitudinal cancer survivorship care model beginning at diagnosis and she serves as the current director of Cancer Survivorship for Kaiser San Francisco. She is the host of AIM at Melanoma's supportive cancer care podcast, “Beyond the Clinic.” Dr. Siegel is focused on elevating cancer survivorship to a distinct board certification status. She lives in Davis with her husband, three kids and energetic dog. They enjoy outdoor activities and plant-based living.Key Highlights:[00:10:30] The Power of Storytelling in Identity: Sam and Samira discuss how personal experiences shape the stories we tell and the impact storytelling has on self-identity and cultural understanding.[00:22:45] Challenges in Representation: They share their experiences with representation in the media and the barriers they've faced in telling authentic stories.[00:35:00] Embracing Authenticity in Creative Work: A conversation about the importance of staying true to oneself and how authenticity can lead to more meaningful storytelling and connection.Key Moments:[00:02:15] - Introduction to Sam and Samira[00:10:30] - How personal experiences shape storytelling[00:22:45] - Overcoming challenges in representation[00:35:00] - The impact of authenticity in creative work[00:48:20] - Closing thoughts and takeawaysConnect with Us: Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @mantacares and visit our website at mantacares.com for more episodes and updates.Resources & Links:This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features the PCORI study “Effects of a Communication Intervention Randomized Controlled Trial to Enable Goals-of-Care Discussions” by Nina BickellDisclaimer:All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.This episode was supported by an award from the Patient-Centered Outcomes Research Institute.
In this episode of Inside GRAPPA, Dr. Joel Gelfand joins host Mio Nakamura to discuss a groundbreaking pragmatic trial that may transform access to phototherapy. A long-standing GRAPPA member and trailblazer in dermatologic research, Dr. Gelfand shares insights from the "LITE Study," a patient-centered, nationwide trial comparing home-based vs. office-based phototherapy for psoriasis.You'll hear: • Why phototherapy remains a preferred treatment for many patients, even in the biologic era • Surprising results comparing office phototherapy to adalimumab (a biologic) in previous trials • How skin of color patients may benefit most from home phototherapy---and why • Real-world barriers to accessing phototherapy and how the study tackled them head-on • What's next: From research findings to implementation science and changing payer coverageThis episode is essential listening for dermatologists, rheumatologists, and researchers passionate about improving access and outcomes for patients with psoriatic disease. Tune in for a conversation that blends clinical science with patient advocacy---and may reshape the standard of care.
In this episode of The Patient From Hell, host Samira Daswani sits down with Dr. Cara Bohon, a clinical psychologist and researcher, to explore the unique mental health challenges faced by cancer patients and survivors. They discuss the role of cognitive behavioral therapy (CBT) in cancer care, the complexities of treating cancer-related insomnia, and the shortage of mental health professionals trained in oncology.Dr. Bohon and Samira also review a PCORI-funded study led by Dr. Jun J. Mao, comparing the effectiveness of CBT-I (cognitive behavioral therapy for insomnia) versus acupuncture for cancer-related insomnia. Dr. Bohon breaks down step-by-step sleep strategies for cancer patients, offering practical tools to improve sleep, emotional well-being, and cancer-related anxiety—even for those without access to therapy.This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this PCORI study by Jun J Mao, MD.Check out the free mental health resources mentioned in this episode from Veterans of America here.--Your Cancer GPS is here! Step-by-step breast cancer maps based on what others have gone through and what oncologists recommend.Key Highlights:Insomnia is a major issue for cancer patients and survivors alike – beyond just trouble sleeping, it exacerbates pain, fatigue, cognitive impairment, and emotional distress, making cancer treatment even more challenging. The clinical trial covered in this episode found that cognitive behavioral therapy for insomnia (CBT-I) led to better sleep improvements compared to acupuncture, with lasting effects even after treatment ended. While acupuncture may not be as effective as CBT-I for sleep, it showed short-term benefits for managing cancer-related pain, which can still be valuable for your mental health as wellThe problem with therapy today is not just accessibility, but also the fact that many therapists aren't trained in psycho-oncology, making it difficult for cancer patients to find mental health support tailored to their unique challenges. Techniques from CBT-I, such as sleep restriction, stimulus control, cognitive restructuring, and relaxation exercises, can significantly improve sleep quality—even for those who can't afford professional therapy.About our guest: Dr. Cara Bohon is a clinical psychologist and researcher from Stanford University with experience scaling delivery of evidence-based mental health treatments to meet the huge needs of patients across the United States. She led clinical programs and research at Equip Health, which addressed the demand for effective eating disorder treatment by providing training and virtual delivery of evidence-based eating disorder treatment across the country and is passionate about expanding her work in oncology in the future.Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.This episode was supported by an award from the Patient-Centered Outcomes Research Institute.
Everyone can have a role in the Pulmonary Fibrosis community! Whether that's as a patient, a caregiver and beyond -- information is key to helping tackle all things PF. This episode, we're joined by John Marshall and Dr. Ilene Hollin of Temple University Lung Center to discuss the importance of patient engaged research, and how you can be involved in the research as well!! We'll learn more about PCORI and Convene-PF, and how you can participate in the studies! It's the 'Pulmonary Fibrosis' podcast! Brought to you the Wescoe Foundation for Pulmonary Fibrosis and the Pennsylvania IPF Support Network! Are you interested in helping advance PF research? If so, consider joining a workgroup! Visit wescoe.org or pfpatientengagement.org for more details!See omnystudio.com/listener for privacy information.
Host Dr. Davide Soldato and guests Dr. Suzanne George and Liz Salmi discuss their JCO article "Overcoming Systemic Barriers to Make Patient-Partnered Research a Reality" TRANSCRIPT TO COME Dr. Davide Soldato: Hello and welcome to JCO's After Hours, the podcast where we sit down with authors from some of the latest articles published in the Journal of Clinical Oncology. I am your host, Dr. Davide Soldato, Medical Oncologist at Ospedale San Martino in Genoa, Italy. Today, we are joined by JCO authors Liz Salmi, Researcher and Patient Advocate, and by Dr. Suzanne George, who works as a Medical Oncologist at the Dana-Farber Cancer Institute where she acts as the Chief of the Division of Sarcoma. She is also Associate Professor of Medicine at Harvard Medical School. Today, we are going to discuss with Suzanne and with Liz the article titled, “Overcoming Systemic Barriers to Make Patient-Partnered Research a Reality.” So thank you for speaking with us, Suzanne, Liz. Liz Salmi: Thanks for having us. Dr. Suzanne George: Yes, thanks. Dr. Davide Soldato: I just want to make a brief introduction because I think that the concept of patient partner research is very wide and I'm not sure that all of the readers of JCO really have a deep understanding because I imagine that there are a lot of ways we can involve patient and patient advocates in the research process. And so I was wondering if you could give us a little bit of an introduction about the concept. Dr. Suzanne George: Sure. I think the point that you raise is really important because there are many terms that are used, patient-partnered research, patient advocacy, but I don't think that there's a single definition as to what that actually means. In the context of our work, we've sort of summarized our experience through something called the PE-CGS or the Participant Engagement and Cancer Genome Sequencing network. And in that project, which is a Moonshot funded network, the intention is to have participants in research be true partners working with traditional academic research teams in order to develop networks specifically focused on cancer genomics. So what we've done, every center is a little bit different in the network, but we're really having research participants not just act, but really work on the research team from the beginning of the project inception all the way through the research project. Liz Salmi: What brings me to the PE-CGS network is my 17 years experience as a person living with a low grade glioma, brain tumor or brain cancer and involving patients in the co-design of research is super critical because patients bring unique lived experiences that can shape research questions, study designs and outcome measures in ways researchers might not anticipate. And we're finding this through our network. So through my work, including my patient experience and brain tumor focused study designs, I've seen firsthand that patient insights can drive more practical implementations that ultimately benefit both patients and the researchers. And so the particular project I work on in the network, we've got like five different arms and different groups of cancer types that are being represented, so I'm basically focusing on the OPTIMUM study around how brain tumor patients can help in this study design. So in this project I serve as not just a participant in the research, but also as a patient co-investigator. Dr. Davide Soldato: That is very interesting. And I think that we really captured the essence of patient-partnered research by having both of you here talking with us about the PE-CGS. And the second question that I wanted to ask is: I really think that the network focuses on something that is quite important right now and currently in medical oncology - so cancer genome sequencing, access to novel therapies - and I think that it's really challenging to imagine a way in which we can really get our patient and get patient advocates to help us designing new trials who are looking into this. And I just wanted to know, do you think that there is something that is particularly challenging when we are speaking specifically about cancer genomics and access to this type of drugs that are targeting specific molecular alteration? Because I think that in general it might be a little bit easier, maybe I'm biased on this, so you can also tell me if I'm wrong, but I think that it's a little bit easier when we are trying to design, for example, behavioral intervention or things that are more commonly found in oncology and a little bit more complicated when we are speaking about genomics. Dr. Suzanne George: So I think that's part of what this network is trying to address, which is really what are the barriers and the opportunities around cancer genomics from the patient perspective and how do we make sure that that perspective is included as we're thinking about study design and inclusion? As Liz mentioned, this network has five different networks within the network, five different centers, and each center is slightly different with the population that it engages with. And so there's diversity there in terms of reaching out to different patient communities and partner communities around potential barriers for genomics research. I think one of the things though that we're finding across the network is that people want to be part of this work. People that have a lived experience of cancer want to help move the field forward. And what we ended up writing about was some of the barriers that get in the way of that. It's awesome to have people like Liz that are like all in and then there's people who are on the other end of the spectrum that want to share their information to help move the field forward around genomics, but then there's all these barriers at the systems level that get in the way of that. So I think that that's one of the challenges we're trying to overcome and learn about across the network. Liz Salmi: Yeah, I think I bring this really interesting, I can't say I'm really interesting, but I think I bring this really niche perspective. Not only am I a person living with a brain tumor and I'm a co-investigator but also like a participant in this study. I also, in my day job, I'm an investigator as part of the director of communications and patient initiatives on the OpenNotes lab at Beth Israel Deaconess Medical Center. And our lab really focuses on how open, transparent communication between doctors and patients improves care. And that's been going on for longer than I've been around on our team. But what I bring to that lab is I focus on engaging both patients and clinicians in spreading the awareness about the power of how easy access and transparent communication, access to information across healthcare settings helps patients feel more involved and informed in their care. And I work specifically, it's a really niche area. I work on projects that aim to expand access to notes and test results in diverse care settings, really helping tailoring initiatives so that various patient communities can understand how they can be involved in these types of research projects. Ultimately that's what brought me into this space. I might be one of the first generation of patients that actually starts helping co-design studies on things like this. And I think that across a lot of healthcare settings cancer is really what we're focused on. But patients are now increasingly being involved as research collaborators. And there's many different funding institutions such as the NCI but also PCORI they now mandate that funders reflect a shift towards more patient centered research frameworks. So it's like the PE-CGS network isn't the only group that's being funded to do research in this way. And I think other investigators, even outside of the cancer space, but specifically in cancer, need to learn how to do research in this way. Dr. Suzanne George: Yeah, I agree. And I think the other thing that we need to do is if people want to participate and that participation in many of these networks has to do with record sharing and data sharing, the system needs to accommodate that. If people want to share their information in order to allow research to be performed, then we need to make sure that that can happen, and that it's not that the institution systems don't connect with someone else's systems or that you to pay X, Y and Z dollars for the data to go A, B and C, or that some places are on this EHR and some places are on that EHR and so, sure, you can share it, but you have to go through all of these hurdles in order to make it happen. When a patient signs a consent form that says, “I want my data to be used,” we as an investigator community, we owe it to that patient to make sure that their information is being part of the data set that will be used for learnings. And that's part of what we wrote about, is the lots of behind the scenes things that just get in the way and that we need to work towards improving. Liz Salmi: Both Suzanne and I are really passionate about this stuff. And as a person living with a brain tumor for the last 17 years, I'm a chronic research participant. I always, always, am really curious. I'm like, “Yes, let me contribute my data. Whether that's electronic health record data or maybe I'm being interviewed about certain aspects of the cancer care experience.” And the one thing that bummed me out for like the first 10 years of being this chronic research participant is I would enroll in things, I'd be interviewed for things, I'd fill out these surveys and then I never heard anything about what happened with that information and that time I spent. And people would send me like a $10 gift card to Amazon, like, “Thanks for participating,” but really what I wanted to know is like, did you do anything with that? How did that inform things? So that really annoyed me to the point where I was like, I'm just going to be part of the research process and really figure out how we share that information back to everybody who had spent so much time. And so my participation in this space is like, “Let's change it. Let's give people information back.” And now I know it takes a really long time to have a finding that could be published somewhere that we then get it back. But closing the loop on the communications gap is something I'm really passionate about. Dr. Davide Soldato: Do you think that we are changing a little bit this perspective? I feel like we are getting a little bit better in creating patient communities of patients who are included in specific clinical trials. And then we do the effort of creating a community, of keeping people really involved with the research that they are participating in. I think that we are not quite there yet, but I think that we are making some kind of steps in that direction. For example, trying also to inform patients to participate in the study when the publication that is related to that specific study comes out. What is the benefit? What have we discovered? I think that we are not quite there yet. There is a lot of room for improvement, particularly in the way I think we communicate these to patients who participated in research. But I have the impression that we are making some steps forward. So I don't know. Do you share the same thoughts? Liz Salmi: So Dr. George talked about the PE-CGS network and then there's five different cancer types being studied. So the thing I can reflect on is what we've done in the, this is a really long acronym but, Optimizing Molecular Characterization of Low Grade Glioma. Say that 10 times fast. So our particular group is people who donate tissues about their brain tumors. We're really collecting data from people with multiple brain surgeries over time, which is really complicated and to make that process easier. And then once those tissue samples are stored somewhere, studying that information about what changes in the brain tumors over time and then also giving those results back to people so they can take that research level data and bring it back to their neuro oncology team and say, “Hey. Here's what I found out, “and having a conversation. So, this is a long multi touch point study and in order to do that, to even make that possible is the individual patients need to understand what's in it for them. They're donating precious tissue in order to make the research process work. And so in order to do that, it's not just the investigators saying, “Hey. Give us your brain tissue, peace out.” It is we have a whole research advisory council of people living with these particular tumor types who help us co-design how do we do that outreach, how do we explain why this is important, or how do we message the importance of this work so they understand,“Oh, this is what's in it for me and this is what's in it for other people like me.” And from there then with that process, which again I mentioned, all of these multi-step processes, once we're able to understand how patients want to hear that information, what's in it for them, then we bring it back to like those bench scientists, investigators going, “Okay. And here's how this workflow should work for the patients,” and design everything around the patient experience before we even care about what's happening from the scientist researcher perspective. Dr. Suzanne George: I agree. I think to your point, I think the fact that we're all here today talking about this is just like you said, is that we are making progress, right? Like we're even here having this conversation. Just like you said, I think there's opportunities to improve and further refine the communication and the involvement back in the patient community. When I think- if I put on my clinical investigator hat, I'm very involved in PE-CGS, but my primary research interest historically has been clinical trials and drug development. And I think that our approach in communicating results back has just not been consistent. But I do think that there's opportunities, just like you said, to provide summaries of information to loop back. I don't think that we've completely solved: What do we do? How do we provide information back to loved ones of patients that may no longer be alive that participated? How do we provide information to people who maybe we don't have their contact information? What if we lose track of them? How do we also make sure that we give people the choice to know? Do you want to know about this or would you rather just participate and then give space to that research? Because maybe that's how people's best for them. So I think that you're right, we're making progress, but I think that there's also a lot more that we can do. So I'm glad we're talking about it. Dr. Davide Soldato: How much do you think that directly involving patients in this process, like asking them directly and co-designing the trial from the very beginning and understanding the level of information? This might also be another question inside of the question. So first, how much co-designing this type of research helps, and then do we also need to further refine at that level of communication, different communication depending on the level of information that different people want to have? Because I think that that's another level of complexity that we need to work towards at a certain point. We need to work on that first level of giving back the information. But then I think that there is also the other point of providing the information and information that should also be probably adapted to the cultural belief of different patients, to the ethnicity or to whatever cultural background or social background or whatever they may place their most interest in. Dr. Suzanne George: So I think that you're 100% right on all of those points. I think those are all topics that need to be considered. We may be able to get to a certain degree of granularity around those communication points, but on the other hand, we also want to be able to communicate broadly and accessibly as possible. One of the interesting things about PE-CGS, as Liz was mentioning, is each of the five centers has a slightly different focus. For example, one of the centers is focused on American Indians and Tribal Nations, and the communication practices coming out of that center are really unique and really very special and something that's been really, I think for me, very fascinating to hear about. Because to your point, like, just the strategy and what's considered appropriate is just different. I think if we hope to build a research world where our research participants and research data come from a broad swath of the population that really represents the population, the only way that we're going to be able to do that is find ways that bring meaning across the population as well. And that may be different based on where people are coming from and where people are at in their own journeys and in their own lives. But it's on us to be open to that and like to hear that, so we can do the right thing. Dr. Davide Soldato: And I think that this is one of the objectives of the PE-CGS, really trying to bring this type of research participation to really diverse and underrepresented populations, not only in terms of cultural background, but I also think about different types of tumors. Like Liz was referring about brain cancer or low grade glioma, which is a very niche population. And I also think about sarcomas, for example, the degree of variability that we have in that specific type of disease is such that we really need to probably find different ways to communicate also inside of this diversity in terms of single patient and experiences, but also in terms of single diseases. You were speaking a little bit before about the fact that the manuscript is really on the barriers that we would need to identify and then to change to make this system a reality. We were talking a little bit about consenting information and consenting the sharing of information, and I think that you make a very interesting point about the consent process when we are designing research. Could you give a little bit of your impressions about giving informed consent? What we need to change, how can we improve? Dr. Suzanne George: The bottom line is the consent process needs to be simple, clear, and transparent. And sometimes I feel, because the traditional way that we've always gone about consent is frequently consent is as it should be in many ways. These consent forms are developed from a regulatory framework. What are we required to do to consent and how do we meet those requirements? Sometimes that becomes directly at odds with how do we do this simply, clearly and transparently? And I think as a research community, we have to be able to find a common ground there. That has to include regulatory requirements, that has to include IRBs. When we think about consents and work with our patient communities on this, everybody agrees the consents need to be more simple, except the IRB or maybe the IRB agrees, but it's this tension between how do we make it simple, clear and transparent and not get so bogged down in the regulatory that we lose that intent. Liz Salmi: It's complicated. As a person, I mentioned, I'm a chronic research participant living with a brain tumor for 17 years. I remember enrolling in studies and seeing things that are just so complicated. I'm like, “Well, I'm just going to sign off.” I imagine somewhere somebody who knew more than me said, “I should just fill out this thing.” And then as I switched to the research world, I spent more time digging into, “Wow, this is a really complicated consent,” versus, “This is a really streamlined consent and I love this.” And throughout my work with Dr. George and others on the PE-CGS network, an example of a good consent that's easy for people to understand is what the NIH All Of Us research project did, where they're trying to get a million people, more than that, signed up to be in this longitudinal study. And their consent is to go to their website and they have a whole bunch of short YouTube videos. There's a kind of like a quiz involved and they're animated, they have multiple languages involved. And I signed up for that study and I was like, “This is a beautiful consent.” And it's a very plain language. And more consents like that. If you're looking for a good example, go there. I have not been paid by them in any way. I'm a participant in their study. I'm not sure if you guys and your listeners are aware, but there was I think, October 19th of this year or 2024, there was a special communication published in JAMA on an update on the Helsinki Principles for Medical Research involving human participants. And what they're saying is an ethical update is patient engagement in research, which emphasizes the need for continuous, meaningful engagement with research participants and their communities throughout the research life cycle, before, during and after studies. And so this is what we're talking about here. And it's now been embedded in these updated principles. Dr. Suzanne George: That's really great and I agree with you. I think the All Of Us consent process is very accessible. It feels like you can understand it. But the other thing is that, again, I also am not directly involved with All Of Us, but the other thing about it is that they also have a high-touch way to consent where they have navigators and people that will go into communities in a very resource intensive way. So there's all different ways to go about it. We need to find a way that we can balance the complexity around regulatory and the simplicity and transparency that we need in cancer research. Dr. Davide Soldato: Do you think that in terms of patient engagement we are doing better in academic sponsored research compared to sponsored research? A little bit of a provocative question maybe. Dr. Suzanne George: I think that's a really interesting question. I think this idea of participant engagement and involvement is being infused across the research community. And in part, the FDA has prioritized it as well. I think the industry sees the FDA prioritizing this as well. And I think that there are many companies that are involving participant and advocacy communities in different ways in the study design, in the study process early on. So I think it's happening. Liz Salmi: I'll be spicy. I've been a participant, I've been an investigator, co-investigator on studies and I have been reached out to often by pharma of, “Hey Liz, brain tumor patient advocate, would you be kind of like the poster child of our study or be involved in that way?” And I personally want to have no work in that space. I have no interest. However, I am approached, and other people living with cancer have been approached, by industry about lending their likeness or being commercials. And I don't think there's enough education to patient advocates of what that necessarily means, pros and cons. But I also can't speak on behalf of all of the patient advocates who might want to see that's a way that they could lend their voice and advance research. I personally think that there needs to be more involvement from the academic side of creating spaces where patients can be involved in the co-design of research and they also get compensated for their time fairly at the same level or some version of it in a way so they don't just jump to the pharma side of things. But that's an opinion that I have. Opinions. Dr. Suzanne George: I think it's really interesting the point that you make about providing more awareness or information about what it even means to do these things from a patient side. I certainly don't know that side as well, but I do see, often, the term patient advocate used very frequently in many different contexts that mean many different things. And I think that there's an opportunity there for understanding more about what that really means and what it can mean. Liz Salmi: Yeah. We want to involve patients, we want to do patient engagement. The BMJ or the British Medical Journal, have this new policy in place for patients as reviewers of research. And what I find interesting with the BMJ is they also ask patients to declare their conflicts of interest. So this is kind of a new space. If you're involved in patient research or perhaps working with pharma, patients, if you're involved at that level, should also be declaring their conflicts of interest if they're getting paid by a pharma. Or do I have a conflict now that I'm doing this cool ASCO podcast? Maybe. But do we want to overburden patients with tracking all this information? So it's a new world. The more we have access to information, the more we share information, the more we can read studies and we co-design, there's a new space I think over the next 5 to 10 years where how do we define this in a transparent way. Dr. Suzanne George: Yeah, I think you're right. I know that we're getting long, but I just want to say one other thing about that, which is that you're right. If we're bringing patients in to be partners, then we have to treat each other that way. We have to acknowledge- I think this issue that you raise about compensation and about paying people for their time or acknowledging people for their time, I think that's really important and very under-discussed. Liz and I were at the annual meeting for the PE-CGS and someone was there giving a talk about- this was a guest speaker that was giving a talk about a very large high impact grant and that included a patient advocacy kind of module, let's say. And they put in a specific funding and budget for that component that included compensation for the people- from the people in the advocacy community that were spending their time. And the PI of this project, again, not to get into the details of it, but they were sharing that they got a fair bit of pushback on that. But the PI pushed back and said, “Listen, we're compensating other people for their time. These guys, we want them to be partners, we need to treat them as such.” And I think that also again, kind of we're in a new space, but if we're going to do it right, then we have to acknowledge that we're partners. Dr. Davide Soldato: But I think that maybe an experience like the PE-CGS probably can be also a network for expanding awareness for patient advocates and also for creating sort of a new culture about what does that mean and how can we also improve on that part. Because in the end, if we want to engage, we also need to provide patients with the instruments to engage in a way that we think it's both useful for them, that can make research better, but can also make them at the exact same level as everyone who is participating in that research, which I think it's the bottom line of all the concepts that we are discussing right now. Liz Salmi: Yep. Dr. Suzanne George: Yes, I agree. Dr. Davide Soldato: So I think we have covered a lot of things. Just wanted to make one last reference to a point that Suzanne mentioned earlier, which is the interoperability of systems. And I think that when we come to the cancer genome, that is very important, being able to share information, especially for those diverse and less common cancer types that we were discussing earlier. There is a lot of work in gaining all that information and we need to be able to gather all of that information in the same place to advance research. You were mentioning before that the process is actually very complicated and I was wondering if in the network you are already working on some potential ways to address this type of issue. Dr. Suzanne George: I think our first step is really just calling it out, acknowledging how hard this is and what the barriers are. Oftentimes I think in research, we don't talk enough about what our methodologic barriers are. We talk more about what our results are, but not like how hard it is. But like in our projects, the Count Me In project, my network that I'm involved with, we're doing rare tumors. We can only do the United States and Canada because of privacy issues. And we're doing a completely web based platform. So we have the technology. But the privacy laws are impeding our ability to involve other parts of the world. And even within the United States, it's not as easy as we would like to get records. For example, despite the fact that people are saying, “Yes, use my records.” But then it's like, “Okay. Well, that's not that easy. How are we going to get them?” We had to hire a third party vendor in order to get the records, in order to manage all the different consents and releases that were needed across all these different hospital systems. So I think the first question is just calling it out and then from there working together as a community to try to see what the solutions can be, because we need to come up with those solutions. Liz Salmi: Yeah, we're in the same camp as Dr. George and the fact that of the five partners, we're not associated with one particular institution. So we can reach out around the country and get access to those records. And we need them at multiple points in time, over time and it takes a lot of effort and work. And it's not like you could just, say, call hospital A and they have all the information. It's like all of the calls to all of the other sites. And it's not just from one surgery, it's from two or more surgeries. But also the way that people stay involved, and, by people, I mean patients and family members, there's this promise that at some point you're going to get some sort of information in response. Like, it's the “what's in it for me?” aspect of it. We do interviews with those who've been enrolled in the study, those who could be potential enrollees in the future because they've only had one surgery. And what we're learning overall is there's this altruistic nature that people have of- they want to participate in the research because they're like, “Here's my horrible cancer experience. I know other people are going to go through this as well.” There's this guiding light of “I want to do something, and I'm not going to be the person that creates the cure, discovers the genome or whatever for this particular cancer type. But my little bit of participation in this multiplied by 20, 30, 100, 1000 people, is what is going to lead us to the next phase in development and is going to move the needle for this particular tumor type or other cancer types.” And so what I think the impact in this space and participant engagement isn't just something we figure out, like a little research method and a little finding for one small tumor type, it's like the methods to do that is the big impact. The method around participant engagement can impact even beyond the cancer community. Dr. Davide Soldato: Yeah. As Suzanne was saying, we need to be in a system that really helps us and allows us to do that. So I think that you really have a lot of things to work on inside of the network. Dr. Suzanne George: I think one thing that I would say is I think that this issue of interoperability is acknowledged as a challenge. We refer to several different initiatives across the US where this is supposed to ideally change over time. I think people want it to change over time. I think investigators at the ERTC want it to change over time. I think different countries are working on this. And I think, again, the first step is getting us at the table talking about it, and then figuring out ways to move it forward. And I think it's there. I think that there is the will. We just have to figure out the how and continue to work on that together, because there's just a tremendous opportunity. I live in the rare tumor space, and between the FDA and the EMA and the regulatory, the national and the international research groups, the patient communities, people want this to be solved and I do hope that we will be able to get there. Dr. Davide Soldato: So I would like to thank Liz and Suzanne for joining us today. Dr. Suzanne George: Thanks for having us. Liz Salmi: Thank you. Dr. Davide Soldato: Suzanne, Liz, we appreciate you sharing more on your JCO article titled, “Overcoming Systemic Barriers to Make Patient-Partnered Research a Reality.” If you enjoy our show, please leave us a rating and a review and be sure to come back for another episode. You can find all ASCO shows at asco.org/podcasts. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. DISCLOSURES Liz Salmi Speaking Honoria: Medscape. Research Funding (Inst): Abridge AI, Inc., Yosemite. Dr. Suzanne George Honoraria CStone Pharmaceuticals Consulting or Advisory Role Blueprint Medicines, deciphera, Bayer, Lilly, UpToDate, Research to Practice, MORE Health, Daiichi, Kayothera, Immunicum, BioAtla Research Funding Blueprint Medicines, Deciphera, Daiichi Sankyo RD Novare, Merck, Eisai, SpringWorks Therapeutics, TRACON Pharma, Theseus Pharmaceuticals, BioAtla, IDRx, NewBay Pharma, Acrivon Therapeutics Patents, Royalties, Other Intellectual Property Company name: UptoDate Stock and Other Ownership Interests Abbott Laboratories and Pfizer Recipient: An Immediate Family Member
Send us a textSend me a voicemail: speakpipe.com/longcovidmdIn this conversation, Dr. Khan discusses the impact of the autonomic nervous system in Long COVID, with Dr. Alba Azola, Assistant Professor of Physical Medicine and Rehabilitation at Johns Hopkins University. Dr Azola explains the complexities of autonomic dysfunction, particularly focusing on dysautonomia and POTS, and how these conditions affect patients' daily lives. The discussion highlights the importance of a patient-centered approach in rehabilitation and the need for a multidisciplinary team to address the various symptoms and challenges faced by long COVID patients. In this conversation, Drs Azola and Khan delve into the complexities of dysautonomia, particularly in the context of long COVID and mast cell activation syndrome. They discuss the importance of understanding autonomic dysfunction, the role of mast cells in various symptoms, and the need for a collaborative healthcare approach. The conversation emphasizes non-pharmacologic interventions, the significance of tailored exercise programs, and the various medications available to manage symptoms. Ultimately, they highlight the importance of patient empowerment and finding healthcare providers who are willing to listen and collaborate.Dr Alba Azola, MD@HopkinsMECFSC@AzolaAlbaBioAssistant Professor, Departments of Rehabilitation and Physical Medicine and Pediatrics, Johns Hopkins Medical Center. Director of the Long COVID Chronic Fatigue Syndrome Clinic and Co-director of the JH-UTSW Brain Health Program. She is a co-investigator in several NIH, PCORI, and CDC-sponsored studies on Long COVID. As part of the AAPMR PASC collaborative, she has co-authored several guidance statements on managing Long COVID symptoms, including fatigue, dysautonomia, and cardiovascular complications.Subscribe for more at LongCovidMD.substack.com, and follow Dr Khan on X @doctor_zeest
Dr. Shannon Panszi, a retired Ob/Gyn and founder of The School for Engendering Inclusivity, has dedicated over a decade to advancing gender inclusivity in healthcare and beyond. Trained by the national transgender advocacy group FORGE, Dr. Panszi is an experienced advocate and facilitator for TransFamilies, a national organization supporting families with gender-diverse children. She serves on a PCORI-funded committee addressing cancer disparities for transgender and nonbinary patients and hosts the Gender Matters: Insights from a Physician Podcast, which fosters understanding and inclusivity. A contributor to Rethinking Sexism, Gender, and Sexuality, Dr. Panszi also consults with healthcare providers, educators, journalists, families, and communities on creating inclusive environments that affirm all gender identities. Email shannon@engenderlove.com Website https://www.engenderlove.com Podcast Gender Matters: Insights From a Physician https://podcasts.apple.com/us/podcast/gender-matters-insights-from-a-physician/id1730287785 _______________________________________________ For ways to work with me including the "Determine Your Values Guide" GO HERE: https://paperbell.me/meagan-skidmore Special offer for Fall 2024: Pay-what-you-can coaching session: https://app.paperbell.com/checkout/packages/103462. Please help the podcast grow by following, leaving a 5 star review on Spotify or Apple podcasts and sharing with friends. Learn more about me at https://meaganskidmorecoaching.com. Beyond the Shadow of Doubt™ is a proud member of the Dialogue Podcast Network found at DialogueJournal.com/podcasts, part of the Dialogue Journal, founded by Mormon writer, teacher and scholar, Eugene England. Hopeful Spaces, a monthly support group facilitated by Meagan Skidmore Coaching, is a Dallas Hope Charities component of Hopeful Discussions sponsored by Mercedes-Benz Financial Services USA. Send an email to chc@dallashopecharities.org to join.
In this episode of BioTalk, Rich Bendis sits down with Rachel Rath, the Head of JLABS @ Washington, DC, to discuss her journey and insights on building a thriving ecosystem for life sciences innovation. Rachel shares her academic and professional background, from roles at PCORI and BARDA Blue Knight to leading JLABS @ Washington, DC. She offers an in-depth look at JLABS' national and international footprint, and the significant partnerships with organizations like Children's National, Virginia Tech, and BARDA that strengthen the innovation landscape across the mid-Atlantic. Tune in as Rachel shares the current priorities at JLABS, highlighting the diversity of its tenant portfolio, which spans MedTech, Pharma, and Integrated Healthcare Solutions. She also discusses how JLABS companies benefit from the support and resources available through Johnson & Johnson, including access to valuable connections, mentorship, and funding opportunities via JJDC. Located in the heart of the BioHealth Capital Region, JLABS @ Washington, DC is well-positioned to drive collaboration and ecosystem growth. Rachel sheds light on the unique advantages of this strategic location and shares her views on addressing the challenges faced by life science startups, from funding access to investment connectivity, and the vital steps needed to elevate the region's biohealth ecosystem. Editing and post-production work for this episode was provided by The Podcast Consultant (https://thepodcastconsultant.com). Rachel is responsible for setting the strategic direction and overseeing all operational activities for JLABS @ Washington, DC. Her responsibilities include P&L management, external engagement, innovation sourcing, portfolio management, and operational excellence in collaboration with the team responsible for the site and the region. In addition to managing the business of JLABS, Rachel is responsible for the process of evaluating, selecting and accelerating a strong portfolio of innovators connected to JLABS @ Washington, DC, which supports companies across the broader region. Prior to this role, Rachel served as the inaugural Director of the BARDA Alliance for Johnson & Johnson Innovation. As BARDA Alliance Director, she was responsible for managing BLUE KNIGHT™, a joint initiative between JLABS and the Biomedical Advanced Research and Development Authority (BARDA), which aims to stimulate the innovation and incubation of science and technologies. Rachel led the strategic direction, alliance management, and oversight of all operational activities related to BLUE KNIGHT™, including managing the sourcing and selection of high potential companies for JLABS locations and developing global programming including the annual BLUE KNIGHT™ Symposium. Before joining JLABS, Rachel was the Chief of Staff for the National Evaluation System for health Technology Coordinating Center (NESTcc)—an initiative of the Medical Device Innovation Consortium (MDIC)—that was established with funding from the U.S. Food and Drug Administration (FDA) and was recognized in September 2019 as one of the first collaborative communities with participation by the FDA. Prior to joining NESTcc, Rachel worked at PCORI, helping to launch the Patient-Centered Clinical Research Network (PCORnet), a national effort to engage patients and leverage electronic health data to improve the speed and efficiency of clinical research in the United States. Rachel received her MBA from Georgetown University and MPH in global health policy from The George Washington University.
Dr. Yaw Nyame (Urology) explains how his team has succeeded in engaging in community-based health equity research and provides guidance for those seeking to do this work. PCORI (Patient-Centered Outcomes Research Institute) has resources to help you find partners, but you can also work with advocacy organizations or through conversations with your patients. Recognize power differentials between the provider and patient and empower patients to join this work in a variety of ways. Engage your community partners throughout the entire research process by educating and training them, collaborating on every step from agenda to results, and compensate them like any other team member. Find resources at PCORI here.Music by Kevin MacLeod (https://incompetech.com/)
Join Dr. Mario Castro and Prof. Vibeke Backer as they discuss airway remodeling and airway hyperresponsiveness and their impact in the lives of patients with severe asthma. ADVENT is a medical education non-promotional resource for healthcare professionals organized by Sanofi and Regeneron. Learn more at ADVENTprogram.com. This podcast is intended for healthcare professionals only. Disclaimer: This program is non-promotional and is sponsored by Sanofi and Regeneron Pharmaceuticals, Inc. The speakers are being compensated and/or receiving an honorarium from Sanofi and Regeneron in connection with this program. The content contained in this program was jointly developed by the speakers and Sanofi and Regeneron and is not eligible for continuing medical education (CME) credits. Speaker disclosures: Mario Castro, MD, MPH, reports grants and research support from NIH, ALA, PCORI, AstraZeneca, Gala Therapeutics, Genentech, GSK, Novartis, Pulmatrix, Sanofi-Aventis, Shionogi, and Theravance. He receives consulting fees from Genentech, Teva, Sanofi-Aventis, Merck, Novartis, Arrowhead Pharmaceuticals, Allakos, Amgen, OM Pharma, Pfizer, Pioneering Medicines, and GSK. He receives payment for speaker bureau activities from Amgen, AstraZeneca, Genentech, Regeneron, Sanofi-Aventis, and Teva. He also receives stock options from Aer Therapeutics. Vibeke Backer, MD, has worked as an advisor, supervisor, and investigator of pharmaceutical studies and has received unrestricted grants from AstraZeneca, GSK, MSD & Schering Plough, ALK-Abelló, Nycomed, Chiesi, Novartis, Pharmaxis, Nigaard, Pfizer, Boehringer Ingelheim, Maribo Medico, Aerocrine, Teva, Sanofi, Regeneron, and BIRK NPC. © 2024 Sanofi and Regeneron Pharmaceuticals, Inc. All Rights Reserved. MAT-GLB-2401489 – 1.0 – 10/2024 MAT-US-2410093 v1.0 – P Expiration Date: 10/09/2026
In this episode, we speak with Dr. Eneida Nemecek, a pediatric oncologist specializing in bone marrow transplants and cellular therapies. Dr. Nemecek provides an in-depth look at the science behind these treatments, the process patients go through, and the challenges faced by both patients and caregivers. She emphasizes the importance of caregiver well-being, particularly sleep, and discusses a PCORI study on stress management for caregivers. The episode concludes with a rapid-fire Q&A session covering key terms and concepts in the field. This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features these PCORI studies (Study #1 & Study #2) by Mark Laudenslager, PhD. Key Highlights: 1. Bone marrow transplant involves replacing a patient's immune system with a healthier one, either from a donor or the patient's own modified cells. 2. Caregiver quality of life, especially sleep, is crucial for patient outcomes in bone marrow transplant cases. 3. CAR-T therapy is a form of cellular therapy where white blood cells are engineered to attack specific targets, offering new treatment options for certain cancers. About our guest: Dr. Eneida Nemecek is a Professor of Pediatrics and Medical Oncology and Associate Director of Clinical Research at the Knight Cancer Institute-Oregon Health & Science University (OHSU) in Portland, Oregon. Native from Puerto Rico, she completed her Pediatric residency at Case Western Reserve University in Cleveland, OH and Pediatric Hematology/Oncology fellowship at the Fred Hutchinson Cancer Research Center in Seattle, Washington. She has a Master in Epidemiology and Clinical Research from the University of Washington and a Master in Healthcare Business Administration from OHSU. Dr. Nemecek is an established clinical researcher with over 20 years of experience in trials ranging from investigator-initiated early phase to large, multicenter studies funded by a variety of mechanisms. Her research focuses on bone marrow and cellular therapies, experimental oncology therapeutics and health services research addressing disparities in access for underrepresented groups. She has served in leadership roles in steering committees for several national cooperative research groups. She has also held elected leadership positions as director, trustee or committee chair in multiple professional organizations. The Your Cancer GPS™ platform is coming! Step-by-step subway maps that guide you through the entire cancer experience. Learn more here! Key Moments: At 14:40 “Sleep is healthy. If you are the one caregiver of a patient and you get sick because you're stressed and not getting enough rest, then you get affected and your patient gets affected too. It's a very important part of our health. Eat, sleep, get some time for yourself. Those are all things that just need to happen. The way that we're designing medicine today, sometimes we forget that the caregiver is kind of a patient. If we lose that person, we are in serious trouble. I can tell you multiple examples about when that has happened and how difficult it is for the medical team and for the family.” At 28:03 “I think it's really important to remind ourselves that the brain, our psychosocial life, is part of our health. I think sleep, exercise, diet studies, anything that can improve the life of people should be studied in a very organized setting, just like you study drugs, if we're going to do this well.” Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Join Journal Club Download my free guide to Internal Bleaching PDF Follow @dental_digest_podcast Instagram Connect on Instagram: @dr.melissa_seibert on Instagram DOT - Use the Code DENTALDIGEST for 10% off Dr. Richard Niederman is professor and chair, Department of Epidemiology & Health Promotion at New York University College of Dentistry, and Co-Director of the World Health Organization Collaborating Center for Quality-improvement, Evidence-based Dentistry (QED). He graduated magna cum laude in 1976 from the Harvard School of Dental Medicine where he also received his periodontal specialty training. He received certificate training in Evidence-Based Medicine at Oxford University in 1996. He is the founding USA editor of the journal Evidence-Based Dentistry; co-author of the book Evidence-based Dentistry, and author of more than 100 peer reviewed scientific articles. NIH, PCORI, CMS, and foundations support his current work in urban New York and rural New Hampshire, and his prior work in urban Boston, and rural Colorado, Hawaii, Kansas, and Maine. He has also collaborated on programs in Argentina, Brazil, and Colombia. His work, over the last 15 years, focuses on creation, dissemination and implementation of community-based caries prevention programs. This now has evolved to a program of SAFE Dentistry (Safe Aerosol Free Emergent Dentistry). These bring primary and secondary preventive care to people, rather than people to care.
In this captivating episode of "The Patient From Hell" podcast, Dr. Sydney Barned shares her unique perspective as both a practicing physician and a seven-and-a-half-year survivor of stage 4 non-small cell lung cancer (NSCLC). Dr. Barned offers invaluable insights into the challenges of navigating a cancer diagnosis, the importance of patient advocacy, and the gaps in understanding between doctors and patients. Her story highlights the need for better communication, education, and support in cancer care, while also shedding light on the personal struggles and triumphs of living with cancer. We also delve into the Patient-Centered Outcomes Research Institute (PCORI) funding study comparing the impact of using different types of material to understand palliative chemo for advanced cancer patients. This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this PCORI study by Debra Schragg, MD, MPH. Key Highlights: 1. Dr. Barned's dual perspective as a doctor and cancer patient provides a rare and insightful look into the complexities of cancer care. 2. The episode emphasizes the importance of patient education and self-advocacy in navigating cancer treatment and palliative care. 3. Dr. Barned's experience reveals gaps in doctor-patient communication and understanding, particularly regarding palliative chemotherapy. About our guest: Dr. Sydney Barned, is a dedicated physician and lung cancer advocate committed to advancing research, raising awareness, and supporting policy initiatives in the field of oncology. Diagnosed with stage IV lung cancer at the age of 33, she brings a unique perspective to lung cancer advocacy, combining her firsthand experience with her medical expertise to drive positive change in the fight against cancer. With a background in Internal Medicine and a focus on hospital medicine as an internal medicine hospitalist, Dr. Barned is actively involved in community outreach and educational initiatives aimed at empowering patients and healthcare professionals alike. Key Moments: At 3 minutes : "So I had to do a lot of compartmentalization and it was some a lot of the times it was tough especially when I got patients who were younger and you know they reminded me of myself.... I've diagnosed patients with cancer, treated the side effects of cancer, you know, had to have those difficult conversations where I'm like,' look, treatment is not working. We need to switch to more comfort based measures.' I've had to bring in hospice and, you know, I've even had to pronounce time of death. So I've seen the entire spectrum and I mean, one of the things that it definitely does make me, it makes me very grateful for the life that I have." At 30 minutes: "Most patients when you're going through a diagnosis of cancer, you are not necessarily understanding everything because the emotions that are tied to hearing you have cancer. So just hearing that in itself is a blow, much less hearing you have advanced disease. That's going to be another blow as well. And a lot of the times when doctors are talking to you after hearing those two statements, it kind of sounds like, again, I'm going to be aging myself, but you remember Charlie Brown? When the adult was talking... you didn't hear anything. And that's kind of what it's like when a patient is hearing all of this information from their doctors." Manta Maps are coming! Step-by-step subway maps that guide you through the entire cancer experience. Learn more here! -- Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
Ann Blair Kennedy, LMT, BCTMB, DrPH discusses using patients in research projects, finding patients for reseachers, paying the patients, training the patients and the researchers, the challenges, and participating in the dissemination of the study results with Barbara Lewis, MBA
In this episode we speak with Bellinda King-Kallimanis, PhD, an expert in oncology research and patient advocacy. Bellinda shares her diverse experience in the field, from academia to the FDA and now her role at LUNGevity Foundation. The conversation covers various aspects of lung cancer, including screening procedures, risk factors, and common misconceptions. Bellinda emphasizes the importance of early detection and addresses the stigma associated with lung cancer. We also delve into the Patient-Centered Outcomes Research Institute (PCORI) and a study comparing the impact of using different types of material to communicate screening information to patients. The episode also includes a rapid-fire Q&A section, where Bellinda provides concise explanations of key terms and concepts related to lung cancer. This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this PCORI study by Robert J. Volk, PhD. Key Highlights: 1. Lung cancer screening compliance is strikingly low at 5-6%, despite high risk for those with tobacco history, and additional requirements may further complicate the process. 2. Stigma surrounding lung cancer, primarily due to its association with smoking, can deter people from seeking screening or discussing their health history, despite the fact that people with no tobacco history or people who have not smoked can also develop the disease. 3. Patient involvement in research, through initiatives like citizen science programs, and improved communication of complex information are crucial for advancing lung cancer care and understanding. About our guest: Dr. Bellinda King-Kallimanis is Senior Director of Patient-Focused Research at LUNGevity Foundation. In her work at LUNGevity she aims to ensure that patient and caregiver voices are incorporated in decision making across a wide variety of stakeholders and has built a Citizen Scientist program to aid this. Prior to joining LUNGevity, she worked at the US Food and Drug Administration Oncology Center of Excellence on the Patient Focused Drug Development team. There, she worked on the development and launch of Project Patient Voice, a resource for patients and caregivers along with their healthcare providers to look at patient-reported symptom data collected from cancer clinical trials. Bellinda also has experience in industry and academia and has published over 70 peer-reviewed papers. She received her Bachelor of Social Science and Master of Science in applied statistics from Swinburne University of Technology in Melbourne, Australia, and her PhD in psychometrics from the Academic Medical Center in Amsterdam, Netherlands. Key Moment: At 38:39 “I've taken it on to try to improve my communication as a researcher, because we spend so many years reading complex materials that you just start talking that way. It does not resonate with my family. They'll be like, what are you talking about? Who do you think you are? So if we really want to be able to talk to people and connect the work we do, then we have to be able to talk about it in much simpler terms. I really do think it's so important for us all to work on our abilities to make sure that we are speaking to each other versus, I've been in plenty of conversations where people are not speaking, they're just speaking around each other because there's a gap in the understanding and healthcare is already like very complex and cancer is really scary. So,just being aware of not talking in acronyms all the time.” Visit the Manta Cares Website Disclaimer: All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
On this episode of Ask Michelle, Michelle covers several health insurance topics such as PCORI fees, Section 1557 of the Affordable Care Act (ACA) and offers guidance on what to do if your organization's health plan experiences a data breach. Michelle answered questions regarding eligibility for health spending accounts under COBRA continuation, stand-alone HRAs for employees on spouse's plan, and employer reimbursement for individual plans. Curious about a compliance issue? Submit your questions to AskMichelle@imacorp.comand Michelle will answer them on the next episode.
The Lead is a journal review podcast designed to keep listeners up to date and informed on the latest publications and hottest topics in electrophysiology. The Lead's session at Heart Rhythm 2024 includes three discussions, covering Transvenous Extraction of Conduction System Pacing Leads: An International Multicenter (TECSPAM) study and Safety, Efficacy, and Reliability Evaluation of a Novel Small-Diameter Defibrillation Lead: Global LEADR Pivotal Trial Results from the May 2024 issue of Heart Rhythm Journal, as well as Tachycardia therapy and Endpoint Results of the First Modular, Intra-body, Communicating Subcutaneous Defibrillator-Leadless Pacemaker System: MODULAR ATP Interim Cohort from the May 2024 issue of the New England Journal of Medicine. Join us for a lively and informative discussion! https://www.hrsonline.org/education/TheLead Host Disclosure(s): C. Cheung: Research: Abbott, Speaking/Teaching: Biosense Webster, Abbott, Biotronik D. Kella: Speakering, Teaching, and Consulting: Zoll Medical Corporation D. Varghese: Nothing to disclose Contributor Disclosure(s): C. Rinaldi: Research: Abbott, Medtronic, Boston Scientific, LivaNova, Membership on Advisory Committees: EBR Systems, Speaking and Teaching: Spectranetics Corporation M. Leal: Speaking and Teaching: Sanofi, Research: Medtronic R. Pathak: Nothing to disclose. M. Chelu: Research: Impulse Dynamics USA, Abbott, PCORI, NIH/NHLBI, Speaking and Teaching: Impulse Synamics USA A. Amin: Speaking, Teaching, and Consulting: Medtronic, Boston Scientific, Philips E. Zeitler: Research: Sanofi, Bionsense Webster, Inc., Speaking, Teaching, and Consulting: Biosense Webster, Inc., Boston Scientific, Element Science, Inc., Membership on Advisory Committees: Medtronic
Dr. Kozower, a thoracic surgeon, discusses the role of surgery in lung cancer treatment and the use of surgery in the diagnosis of lung cancer. The conversation then shifts to the PCORI study on lung cancer surveillance, where Dr. Kozower explains that the intensity of surveillance, such as the frequency of CT scans, does not impact survival rates for lung cancer patients in retrospect. We also discuss the future of lung cancer treatments. This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this PCORI study by Dr. Kozower. Key Highlights: 1. Surgery is the primary treatment for early-stage lung cancer, serving both curative and diagnostic purposes. 2. Surveillance, including regular follow-up visits and imaging, is crucial for detecting new lung cancers, especially in individuals with a history of the disease. Screening, on the other hand, aims to detect cancer in its early stages in individuals without symptoms. 3. The narrative around lung cancer is changing due to advancements in molecular diagnostics, targeted therapies, and immunotherapy, offering more hope and optimism for patients. About our guest: Benjamin D. Kozower, MD, MPH is a Professor and Vice Chair of Surgery at the Washington University School of Medicine in St. Louis, MO. He completed his General Surgery training at the University of Connecticut in 2004 and his Cardiothoracic Surgery residency at Washington University in 2006. Dr. Kozower worked at the University of Virginia in Charlottesville, VA from 2006-2016 until returning to St. Louis in 2016. He is a General Thoracic Surgeon with a focus in thoracic oncology and directs the Thoracic Robotic Program at Barnes Jewish Hospital. He is also a clinical outcomes and health services researcher with funding from the Agency for Healthcare Research and Quality, the Patient Centered Outcomes Research Institute and the National Cancer Institute. Key Moments: At 7:29 "Surgery is the traditional treatment for early-stage lung cancer, patients who have small tumors typically confined to the lung when hopefully it can be curative." At 14:50 "Everybody's followed after their cancer treatment. What's not clear is how often should we follow people?" At 15:38 "The more frequently I'm seen, the earlier something could be detected and the better I'll do. Makes perfect sense. Unfortunately, I'm not sure it's true." At 35:41 “Fortunately now we're starting to see the development of targeted therapies for specific [lung cancer] mutations. We're starting to see different types of therapies, and not just chemotherapy, but something called immunotherapy, which stimulates the body's immune system to help fight the cancer. So these things have dramatically changed the paradigm of how we treat lung cancers.” Visit the Manta Cares Website Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions. --- Support this podcast: https://podcasters.spotify.com/pod/show/manta-cares/support
Dr. Karen Wernli, a Senior Scientific Investigator at Kaiser Permanente Washington Health Research Institute, explores the topic of preoperative breast MRIs in a PCORI funded study. The conversation provides insights into the emotional and practical aspects of living with cancer and the need for improved communication between researchers and patients. They touch on the classification of breast density, the importance of guidelines, and the need for mandatory reporting of breast density and discuss various topics related to breast cancer screening and decision-making. They also explore the concept of decision quality and how it is measured in research studies. This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this PCORI study by Karen Wernli, PhD, Diana Miglioretti, PhD, Karla Kerlikowske, MD, Anna Tosteson ScD & Tracy Onega, PhD. Key Highlights: 1. Dr. Karen Wernli explores how breast density may influence decision quality and regret in treatment decisions involving preoperative breast MRIs. 2. Breast density is not only a factor in masking breast cancers but also an independent risk factor for breast cancer itself, and patients are eligible for advanced screening if they have dense breasts. 3. The discussion focuses on understanding how the use of preoperative breast MRIs affects decision quality and regret among women diagnosed with breast cancer. The study aims to shed light on whether additional imaging tests lead to increased confidence in treatment decisions or potentially cause regret. About our guest: Karen Wernli, PhD, is a Senior Scientific Investigator at Kaiser Permanente Washington Health Research Institute and Professor in the Department of Health System Science at Kaiser Permanente Bernard J. Tyson School of Medicine. She is a cancer epidemiologist and health services researcher whose work focuses on incorporating patient-centered outcomes to improve health care along the cancer care continuum, from prevention to survivorship. Her work spans several types of cancer (including breast and lung), and explores the impact of cancer in special populations (adolescents and young adults with cancer). Her research strives to answer critical questions at the confluence of patients' needs and clinical priorities. Research reported in this podcast was funded through a Patient-Centered Outcomes Research Institute (PCORI) award (PCS-1504-30370). Data collection for this research was additionally supported by the Breast Cancer Surveillance Consortium with funding from the National Cancer Institute (P01CA154292, U54CA163303), the Agency for Health Research and Quality (R01 HS018366-01A1), the UC Davis Clinical and Translational Science Center, the UC Davis Comprehensive Cancer Center, and the Placer County Breast Cancer Foundation. The perspective shared is solely the responsibility of Dr. Wernli and does not necessarily represent the official views of the Patient Centered Outcomes Research Institute or Kaiser Permanente. Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions. --- Support this podcast: https://podcasters.spotify.com/pod/show/manta-cares/support
Join us for episode 1 of a 3-part series discussing ASIST study's impact on students with mild asthma and health equity. Supported by PCORI Grant # EADI 26916, Featuring Dr. Andrea Pappalardo and Amanda Filippelli, hosted by Ann Nichols.
Join us for episode 3 of a 3-part series exploring ASIST study's impact on students with mild asthma. Supported by Grant # EADI 26916 from PCORI, today's discussion features four school nurses. Ann Nichols, Paulette Abbey, Mary Elaine Knight, & Anne Meoli
Episode 2 of a 3, Lynne Meadows, Dir. of School Health Services Fulton County Schools, GA, discusses the ASIST study's impact on students with mild asthma. Supported by Grant # EADI 26916 from PCORI, Featuring Tanisha Sanders and her son Rylen
What is Patient Engaged Research? What is PCORI? Sophia Kreider and Ilene Hollin, from Temple University College of Public Health, join Kevin Crockett to discuss the important information that patients and caregivers provide when researching a rare disease like IPF. It's the 'Pulmonary Fibrosis' podcast! Brought to you the Wescoe Foundation for Pulmonary Fibrosis and the Pennsylvania IPF Support Network! Learn more at PAIPFsupportnetwork.org!See omnystudio.com/listener for privacy information.
Welcome to "How We Made it Count," a special podcast that takes you behind the scenes of the Eczema Counts project. This collaborative effort, fueled by an engagement award from the Patient Centered Outcomes Research Institute also known as PCORI, aimed to educate and inspire caregivers, patients, and researchers alike. Through a series of virtual games and in-person sessions, Eczema Counts went beyond conventional approaches and brought a unique blend of gamification and patient-centered outcomes research to the forefront. Listen as key members of the project reflect on its impact, share their thoughts for the future, and dive into the fascinating world of pediatric dermatology research and the innovative partnership between the Pediatric Dermatology Research Alliance and the National Eczema Association. For more information visit PeDRA, the National Eczema Association, or Eczema Counts.
Last week we talked about a trial of a nurse and social worker outpatient palliative care intervention published in JAMA. This week, we talk about the other major palliative care trial of default palliative care consults for hospitalized older adults with COPD, kidney disease, or dementia, published in the same issue of JAMA. (See also our accompanying editorial, first author Ashwin Kotwal who joins today as a co-host, and a podcast I recorded with JAMA editor Preeti Malani). For context, listen to the prior podcast with Scott on “nudges” and prior podcast with Kate on who should get palliative care. Three things I love about this podcast, and why you should listen. First, in our editorial, we expressed concern about the length of stay metric not being patient centric, though important for health systems focused on cost savings. It was refreshing to hear Scott and Kate express similar sentiments. Second, we wanted to know how the palliative care clinicians felt about the increased workload - and we had some glimpses into those experiences (and hope for a future publication that fleshes it out further). Finally, we heard about next steps and lessons learned, as though this was the largest pragmatic trial of palliative care to date, it isn't their last. Much more to come. And next time maybe we really will play the game where every time the word pragmatic is mentioned you have to drink
Lisa Stewart interviews Health Hats to discuss family, music, & listening to younger activists taking over navigation & reform of healthcare. Watch on YouTube Download the printable newsletter here Contents Table of Contents Toggle EpisodeProemPodcast introWhy reflect? Accept and look forward.Bitch in bursts, not dribblesCatastrophizing, pathological optimistMusic, podcasting, grandsonsListening to younger activistsConnection through video, Instagram, YouTube shortsImpact Call to actionProgressing in musicProgressive condition and musicTravel with abilities in Costa RicaTravel with abilities in the USWords of wisdomReflection on AdvantagePodcast OutroPlease comment and ask questions:Production TeamCreditsInspired by and Grateful toLinks and referencesRelated episodes from Health HatsCreative Commons LicensingCC BY-NC-SADisclaimer Episode Proem Boland van Leeuwen family Happy Holidays, family, friends, and colleagues. May the 2024 New Year infuse wonder, community, and rejuvenation. I reunited with my friend, Lisa Stewart, at the PCORI Annual Meeting a few months ago. Lisa suggested that she interview me for the new year. When I met Lisa, she was Senior Engagement Officer and Health Equity Advisor at PCORI (the Patient-Centered Outcomes Research Institute). Currently, Lisa is the Principal at Torchlight Engagement Advisors & Leadership Coaching. Her joy lives in connecting ideas, people, and groups for organizations serious about improving the health outcomes of over-burdened communities through health equity strategy implementation and integration, cross-sector partnerships, impact investing, and capacity-building. We ponder privilege, listening, bitching, travel, family, and music. Hang on. Podcast intro Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this. Why reflect? Accept and look forward. Health Hats: Hi, Lisa Stewart. Lovely to see you, Lisa Stewart: Wow. It's lovely to be seen and be here with you. We had this wild and crazy idea that it was time for Danny to be interviewed, right? We're going to turn the tables on Danny. DALL·E 2023-12-16 - a color photo of a person looking in a mirror and seeing a black and white younger version of herself What better time of year as we march into 2024 and start thinking about the life we want to lead and what we want to do differently? I'm thrilled to be in conversation with you anytime, Danny. Anything you want to say? Health Hats: I have mixed feelings about reflection. On my podcast, I start with a proem, a preface. Why do I have the conversation? Why this guest, why this topic, whatever. A reflection at the end, done after production - the interview, the producing, the editing - were there pearls here? Is there one more story to tell? But the reflection is essential even though I'm not really a backward-looking guy. Lisa Stewart: Tell me more. Bitch in bursts, not dribbles Health Hats: Life has ups and downs. It is just the way it is. You can't have an up without a down where everything is flat - no ups and downs. Sounds boring to me. I have a chronic illness, and I'm pathologically optimistic, right? That's my style. Other pathologically optimistic people have taught me that you need to take two minutes periodically and just vent. And do the life sucks. Woe is me stuff. But mostly, I don't want to look back and think woe is me. So that's what I mean by not looking back. Accept what is and what are we going to do now. Lisa Stewart: Very practical. Do you have a ritual around your two-minute releases? DALL·E 2023-12-16 - biracial couple laughing, one in a wheelchair looking at their watch Health Hats: It's a good question.
It's the spookiest time of the year, and I'm not just talking about renewal season. In this Halloween episode of the Empowering Plans podcast, Jennifer McCormick and Nick Bonds talk through some of the scary issues creeping up on health plans: rising PCORI fees, proposed regulations on mental health parity rules, and two fascinating court cases that may have significant implications for ERISA plans going forward. But don't be scared, Phia is here to help!
Clinical trials exist to help prevent, screen for, diagnose, or treat diseases and other health problems. Without them, we would not have new treatments or other advances in health and medicine. But how are the clinical trial endpoints, or the preferred outcomes of these trials determined? Today, Anthony Gucciardo NKF's Senior Vice President of Strategic Partnerships, Dr. Joseph Vassalotti, NKF's Chief Medical Officer, and Kent Bressler, a Patient advocate and FSGS patient, discuss this and more. In this episode we heard from: Dr. Joseph Vassalotti MD Dr. Vassalotti is the Chief Medical Officer of the National Kidney Foundation (NKF) and Clinical Professor of Medicine in the Division of Nephrology, at Icahn School of Medicine at Mount Sinai. At NKF, his major focus is implementation of evidence-based clinical practice guidelines in chronic kidney disease (CKD). He led collaborations to develop the Kidney Health Evaluation for Adults with Diabetes quality measure to improve evidenced based estimated glomerular filtration rate and albuminuria testing to guide detection, risk stratification and interventions proportional to risk in the U.S. He also served as PI for an AARP-funded Kidney Health Evaluation for Adults with Diabetes to analyze quality measure satisfaction with detection, evidenced-based therapies and health equity. Currently, he serves as Principal Investigator for the Kidney Score Platform, an NKF educational project funded by the Veterans Administration Center for Innovation to improve awareness and education among Veterans with and at risk for CKD in the primary care setting. He is also a co-investigator for the Center for Disease Control and Prevention's CKD Surveillance Project. Dr. Vassalotti typically sees approximately 40 patients per week and has over 100 publications in peerreviewed journals. Anthony Gucciardo Anthony is responsible for forging and maintaining relations with key external stakeholders across a wide range of industries, to advance NKF's mission and objectives, along with those of its partner organizations. Anthony oversees two national Corporate Development Teams, focused on securing revenue necessary to ensure NKF programmatic excellence and impact. He has been with the Foundation since 2002. Prior to NKF, Anthony was a Hematopoietic Stem Cell Technologist at Memorial Sloan-Kettering Cancer Center in New York City, where he was responsible for processing autogeneic/allogeneic bone marrow and peripheral blood stem cells for transplantation. He holds a master's degree in Biochemistry from Columbia University. Kent Bressler Kent is a retired RN who was diagnosed with FSGS in 1984, and received a living donor transplant from his brother Kip in 1987. Kent is an active advocate for preemptive kidney transplant and has on the recommendation of NKF worked closely with the DoD and PCORI as a consumer peer reviewer. He is an NKF peer mentor and advocate who has collaborated on an editorial “Change in Albuminuria and GFR as End Points for Clinical Trials in Early Stages of Chronic Kidney Disease,” published in AJKD in 2019. He will also be participating in the development of the new NKF Patient Network serving on the Data Input and Integration Committee. He has been an active hill advocate for the NKF for six years and was the proud recipient of the 2017 Richard K. Salick Advocacy Award. Kent is also an Army Veteran and retired from the Veterans administration as an RN. He is the co-founder of Kidney Solutions a not for profit program in Texas that assists patients and families in the transplant process and in finding a donor. He is currently an assistant team leader for Region 7. Kent and Cathy Bressler have been married for 50 years and their family consists of Gretchen and Todd Rossington and their son Colt and Celeste and Alex Brown and their children John Banks, Catherine and Alexis Brown. Additional Resources: Find Clinical Trials Clinical Trial Q&A Xenotransplantation Info Do you have comments, questions, or suggestions? Email us at NKFpodcast@kidney.org. Also, make sure to rate and review us wherever you listen to podcasts.
Dr. Karen Wernli, Senior Scientific Investigator at Kaiser Permanente Washington Health Research Institute, delves into the intersection of epidemiology and personalized medicine, exploring the challenges of balancing population-level research with individualized healthcare needs. She discusses survivorship in breast cancer with a comparison of mammograms vs. MRIs for surveillance imaging. Dr. Wernli talks about some of the challenges patients face throughout the breast cancer diagnosis and treatment process, emphasizing the importance of including the patient voice in research to capture those lived experiences. Key Highlights: The study of population health (epidemiology) versus individual health. Comparing Mammograms and MRIs for breast cancer surveillance. Examining the need for a more patient-centered approach to healthcare. About our guest: Karen Wernli, PhD, is a Senior Scientific Investigator at Kaiser Permanente Washington Health Research Institute and Professor in the Department of Health System Science at Kaiser Permanente Bernard J. Tyson School of Medicine. She is a cancer epidemiologist and health services researcher whose work focuses on incorporating patient-centered outcomes to improve health care along the cancer care continuum, from prevention to survivorship. Her work spans several types of cancer (including breast and lung), and explores the impact of cancer in special populations (adolescents and young adults with cancer). Her research strives to answer critical questions at the confluence of patients' needs and clinical priorities. Key Moments: 18 minutes: On the importance of reporting data for subgroups even if it is a small number. “If you only had 5 people in a subgroup, doing complex math about relationships is impossible. But at least I can describe what's going on. At least you could see what's the distribution of the exposure, the outcome of something I'm studying? So that we start to understand what's going on in this population when we don't have any other data." 52 minutes: Looking at surveillance using Mammogram vs. MRI. “Our study found that using breast MRI resulted in twice as many biopsies. What that means is if you did it on a population level, there would be thousands, like tens of thousands of additional women having a breast biopsy. And that if you waited another six months, the mammogram likely would have caught the cancer and maybe would not have changed the course of what was actually happening.” This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this PCORI study by Karen Wernli, PhD. Research reported in this podcast was supported by the Patient Centered Outcomes Research Institute under Award Number CE-1304-6656. The perspective shared is solely the responsibility of Dr. Wernli and does not necessarily represent the official views of the Patient Centered Outcomes Research Institute or Kaiser Permanente. Limitations: Please note the investigators suggest that the multivariate analysis could not adjust for all population characteristics in this observational study. This means that the interpretation of the results from the study is complex. Since we are a podcast that does not provide medical advice, please discuss with your clinician which imaging is recommended for you. Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals. --- Support this podcast: https://podcasters.spotify.com/pod/show/manta-cares/support
Dr. Matt Chia and Dr. Ezra Schwartz (@ezraschwartz10) continue the exploration of how vascular surgeons and patients communicate. They discuss how we share stories with one another and what may get lost in translation. We are excited to welcome Katie Wright (@Translucentone) and Dr. Sherene Shalhub (@ShereneShalhub) to discuss the patient experience of living with Vascular Ehlers-Danlos Syndrome or vEDS. Katie Wright is the vEDS Natural History Study project coordinator in the Division of Vascular Surgery at Oregon Health & Science University, a podcaster, and a patient advocate. They served as the Director of the Marfan Foundation's vEDS Division, The VEDS Movement until this past March, and they sit on the VEDS Collaborative (@vEDSCollabo) and Aortic Dissection Collaborative (@ADCollab) advisory board. Katie was diagnosed with vEDS in 2017 at the age of 28. Shortly after diagnosis, they started raising awareness and fostering community through YouTube videos. Katie then began a podcast titled Staying Connected, a space to share the stories of other patients and patient families. In 2018, Katie started volunteering on the advisory board of the vEDS Collaborative, a patient-centered research collaborative group led by Dr. Sherene Shalhub. Dr. Sherene Shalhub is the inaugural John M. Porter Chair in Vascular Surgery and Division Head of the Division of Vascular and Endovascular Surgery at Oregon Health & Science University. She is also the Vice Chair of Regional Strategy & Surgical Operations for the Department of Surgery. Dr. Shalhub's research interests focus on improving healthcare and outcomes for those with genetic vascular conditions. She is the lead investigator for the vEDS Collaborative Natural History Study and the PCORI-funded Aortic Dissection Collaborative. Dr. Shalhub obtained an MPH followed by her medical degree at the University of South Florida. Dr. Shalhub completed her general surgery training at the University of Washington. She then pursued fellowships in trauma research and vascular surgery at the University of Washington. Resources: The VEDS Movement VEDS Collaborative & Natural History Study If you are interested in taking part in the study or would like more information, please contact the study team VEDSColl@ohsu.edu Donate to the vEDS Natural History Study here. Aortic Dissection Collaborative for Patient-Centered Research | BeCertain.org Staying connected Episode: What Medical Professionals Should Know about VEDS Splenic artery pathology presentation, operative interventions, and outcomes in 88 patients with vascular Ehlers-Danlos syndrome Open repair of abdominal aortic aneurysms in patients with vascular Ehlers-Danlos syndrome Audible Bleeding Exam Prep Aortopathies Episode with Dr. Shalhub Free Chime Sound Effects Download - Pixabay Follow us @audiblebleeding Learn more about us at https://www.audiblebleeding.com/about-1/ and provide us with your feedback with our listener survey.
Newsletter subscribers: Apologies. My Mailchimp feed broke down, and I didn't notice until yesterday. You've missed 10 episodes!! I will repost an episode every other day until we're caught up. I'm so sorry! Dr Herndon, former Medicaid CMO: challenges faced to improve mental health care for emerging adults. Better support systems for their transition to independence Subscribers About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all this. We respect Listeners, Watchers, and Readers. Show Notes at the end. Watch on YouTube Read Newsletter The same content as the podcast, but not a verbatim transcript. Could be a book chapter with images. download the printable transcript here Contents Proem.. 2 Podcast intro. 3 Meet Dr. Mike Herndon. 3 Health is Fragile. 3 Mental Illness in family practice. 3 Readiness to manage mental illness in practice. 4 State Medicaid Director 5 Levers of power 6 Aligning incentives 6 Minor success, at best 7 A word from our sponsor, Abridge. 8 Call to action. 8 Family Advocacy. 9 Not easy being an emerging adult 10 Reflection. 11 Podcast Outro. 11 Episode Proem According to the Commonwealth Fund, in 2016, spending in the US on behavioral healthcare was almost $160 billion, with 58 percent of all behavioral health spending being paid for by Medicare and Medicaid. According to SAMHSA, The Substance Abuse and Mental Health Services Administration, Medicaid is the largest payer in the United States for behavioral health services. Medicaid accounted for 26 percent of all behavioral health spending in 2009. Behavioral health is a term for mental health and substance use disorder conditions to differentiate from physical health. As a clinician, I seldom met a person with chronic physical health issues who didn't also have behavioral health issues. I don't know how meaningful statistics are, except to say a lot of people have behavioral health diagnoses in their records. It costs them, their families, and communities a fortune, and government health insurance pays a significant proportion of those direct costs. Podcast intro Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this. Meet Dr. Mike Herndon Health Hats: I invited my friend and colleague, Dr. Mike Herndon, recently retired Chief Medical Officer for the Oklahoma Healthcare Authority, Medicaid, to chat with us about Emerging Adults with Mental Illness. Mike, thank you so much for joining me. Mike Herndon: You bet, Danny. Happy to be here. Health Hats: Thank you. My friend, Dr. Mike Herndon, and I have done quite a bit together over the years, mainly through PCORI, the Patient-Centered Outcomes Research Institute. We sat on an advisory panel together, then you were appointed to the PCORI Board of Governors, and I came on the board a few years later. You were my Board orientation buddy and helped me navigate and reduce the shock of the experience. I appreciate it. Let's just jump right in. Mike, when did you first realize that health was fragile? Health is Fragile Mike Herndon: That's an easy answer for me. I grew up in rural Oklahoma. In the summer between my sixth and seventh-grade years, I was 12 years old,
In this episode, we talk with Dr. Glyn Elwyn and Danielle Schubbe about the ethical imperative of including patients in the decision-making process. They discuss how patient goals inform treatment decisions and the challenge of making choices for a “future self” with the lived experiences and preferences of today. Glyn and Danielle talk about this process for early stage breast cancer and some of the tools they've created to help both clinicians and patients navigate shared decision-making, including the three-talk model. Key Highlights: The art of combining clinical guidelines and patient preference to make the best treatment decision. The role of patient goals in making decisions and realizing that decisions are being made for a “future self” using “current self” experiences. Exploring the three-talk model of decision making: team talk, option talk and decision talk. About our guests: Glyn Elwyn BA MD MSc PhD FRCGP is a clinician, researcher, and innovator. He is a tenured professor at The Dartmouth Institute for Health Policy and Clinical Practice, USA, and at the Scientific Institute for Quality of Healthcare, Radboud University Nijmegen Medical Center, Netherlands. He has Visiting Professor positions at University College London, UK, and at the University of Lausanne in Switzerland. After reading the humanities he qualified in medicine, completed a Masters in Education, and obtained his doctorate at Radboud University, Nijmegen, Netherlands, with Professor Richard Grol. Glyn Elwyn studies coproduction, shared decision making, and the application of machine learning to digital recordings of clinical encounters. Danielle Schubbe joined the Coproduction Laboratory in September 2017. She is an external PhD student of Health Services Research at Radboudumc in Nijmegen, Netherlands. She has worked on multiple PCORI-funded studies about shared decision making and the implementation of shared decision making in diverse clinical contexts. Key Moments: 19 minutes: On integrating patient preference with clinical guidelines. “I think most discerning clinicians understand how to work within guidelines, and I think most expert clinicians would say I bring in patient preference as well as know what the rules are saying or what the guidelines are saying.” 31 minutes: On the challenge of making a decision for your future self. “Your decision today about that future is gonna be misinformed because you've never experienced that future yourself.... We cannot predict you in three years' time. How will you feel? We can only ask you to do your best to predict how you feel in the future… and you will be wrong.” 49 minutes: Using the three-talk method of decision making. “Then there's the option talk. That's when you present if there is more than one option for the patient to consider for their treatment. That's when you go over all the nitty gritty of the pros and cons of the two surgical treatment options, in our case for early stage breast cancer, in a way that is hopefully not really overwhelming for the patient.” This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features these PCORI studies by Dr. Glyn Elwyn & Danielle Schubbe - Study 1 and Study 2. Visit the Manta Cares website Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions. --- Support this podcast: https://podcasters.spotify.com/pod/show/manta-cares/support
Dr. David Penson, Chair of the Department of Urology at Vanderbilt University, discusses his comparative effectiveness research in prostate cancer. In the second of our two-part prostate cancer series, we delve deeper into the world of prostate cancer treatment decision-making. Dr. Penson discusses the emotional and informational hurdles that patients face, as well as the importance of patient education, understanding patient preferences, and the ongoing battle against overtreatment in prostate cancer. Key Highlights: Importance of informed decision making and arming patients with accurate and reliable information. Understanding the concept of patient preferences in treatment decision making. Overcoming decision biases and how the emotion of a cancer diagnosis can outweigh a rational decision-making process. About our guest: David F. Penson, MD, MPH is the Hamilton and Howd Chair in Urologic Oncology, Director of the Center for Surgical Quality and Outcomes Research and Professor and Chair, Department of Urology at Vanderbilt University. He currently maintains a clinical practice in urologic oncology at the Vanderbilt-Ingram Cancer Center. While his general research focus is clinical epidemiology and health services research across all urologic disease, his specific interests include the comparative effectiveness of treatment options in localized prostate cancer and the impact of the disease and its treatment on patients' quality of life. Key Moments: 4 minutes: On the clinical shift to active surveillance. “We have this situation where we were over diagnosing. Half the men who were detected by PSA screening at the turn of the century were overdiagnosed, depending on how you defined overdiagnosis. And they were all getting treated. So you had this terrible problem where we were just kind of treating everybody. I think what we've learned is that, in fact, not everyone with prostate cancer needs to be treated. That PSA picks up a lot of clinically indolent prostate cancer.” 24 minutes: On determining a patient's priorities: “The cancer control and cure piece is not quite as clear [with radiation] because you're not pulling the cancer out. So you don't have the psychological benefit of knowing what you're dealing with. And it's very hard to do surgery after radiation. So it becomes this set of options, a set of what's important to you, right? So patients may not walk in the door saying, ‘I have a preference set.' But as you start talking to them, their preference set becomes relatively clear. And when I talk to them, I say, ‘Listen, I can tell you what I would do,' because a lot of times they say, ‘Doc, what would you do?' But the problem is, I can't take Dave out of Dr. Penson, right? So I have my own set of preferences.” 36 minutes: On emotional vs. rational decision making. “But I think it's very hard to sort of turn down the emotional volume because the word ‘cancer', any human hears that, and it scares you. Right? That goes back to what we were saying before about maybe we shouldn't be calling Gleason 6 cancer, cancer. Because there's a charge that goes with that word that freaks people out.” This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this PCORI study by Dr. Penson. Visit the Manta Cares website Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions. --- Support this podcast: https://podcasters.spotify.com/pod/show/manta-cares/support
Forward - The Podcast of the Forward Thinking Chiropractic Alliance
To apply for the ACA Healthcare Policy Fellowship - Visit the ACA members section and go to the volunteer opportunities link: https://www.acatoday.org/wp-content/uploads/2023/08/Syllabus.pdfDr. Kris Anderson graduated from Palmer College of Chiropractic's Davenport campus with his DC degree in 2007. He followed that with a master's Fellowship in Clinical Research at the Palmer Center for Chiropractic Research, where he attained his MS degree in 2010. In 2012, Dr. Anderson joined his wife, Dr. Stacy Hallgren, in her practice in Grand Forks, ND, and they continue to operate Performance Chiropractic together. In 2018, Dr. Anderson began work with Valley Community Health Center, now Spectra Health, a Federally Qualified Health Center (FQHC) and Patient-Centered Medical Home (PCMH), to add chiropractic services to their scope of practice. He became their first DC, splitting his time between private practice and Spectra Health. In his role with Spectra Health, he continues seeking new treatment pathways for underserved communities, those who typically lack access to chiropractic services, and especially those in non-traditional living environments or treatment programs for substance use or other disorders.Beyond patient care, Dr. Anderson serves the chiropractic profession in multiple other ways. He has been a board member of the ND Chiropractic Association (NDCA), including serving as president from 2019-2021, and continues to represent the NDCA in various ways as the Insurance Liaison. He was honored as the NDCA Chiropractor of the Year in 2019. Dr. Anderson has twice served on the State of ND Board of Chiropractic Examiners' subcommittees to draft rules and regulations for the Chiropractic Practice Act, once for dry needling and the other for certified chiropractic clinical assistants. Additionally, Dr. Anderson has been a member of the Clinical Compass Board since 2018, now serving as Vice-Chair. Since 2019, Dr. Anderson has represented the ACA as the Advisor for the American Medical Association (AMA)/Specialty Society Relative Value Scale Update Committee (RUC) Healthcare Professionals Advisory Committee (HCPAC). His experience in health policy has led to opportunities to represent the profession at national meetings convened by organizations such as CMS and PCORI. He currently serves as Vice-Chair of the ACA Health Policy and Advocacy Commission and serves multiple subcommittees as either chair or member. He became the House of Delegates Alternate Delegate for ND in 2022 and is a member of the ACA Governors Advisory Cabinet (GAC) and the ACA-PAC Capitol Club. In addition to the NDCA, Clinical Compass, and ACA, Dr. Anderson is a member of the World Federation of Chiropractic (WFC), the North American Spine Society (NASS), the American Public Health Association (APHA), and the National Strength and Conditioning Association (NSCA) where he maintains an active supporting credential as a Certified Strength and Conditioning Specialist (CSCS). He is also a Certified Medical Examiner.Dr. Anderson's commitment to research has followed him from his fellowship into his practice setting. He maintains an ongoing collaboration with colleagues at multiple chiropractic institutions, which has resulted in multiple publications and posters at research conferences. He has contributed to public health with work with the ND State University School of Nursing on a tobacco cessation project and as a grantee of the ND Department of Health to improve hypertension and pre-diabetes identification and management in chiropractic practice. He is also a peer reviewer.Dr. Anderson and his wife, Stacy, have four children and live on a small hobby ranch in rural Grand Forks County, ND. They are members of their local Lions Club International Chapter and serve their community in various other ways as well, such as church council and coaching youth sports. They enjoy spending time with family, working on their hobby ranch with their many animals, camping, and being outdoors as much as possible.
Dr. David Penson, Chair of the Department of Urology at Vanderbilt University, discusses his comparative effectiveness research in prostate cancer. He talks about the evolution of Prostate Cancer awareness in the US, and historic screening and side effect issues that have made it a stigmatized topic for many men. Dr. Penson describes the nuances of PSA testing and how higher diagnosis rates of Prostate Cancer has led to overtreatment in the past, and the current shift to focus on active surveillance is helping to better balance the treatment paradigm for men with Prostate Cancer. Key Highlights: What is comparative effectiveness research and why does it matter to cancer patients? The evolution of the stigma associated with Prostate Cancer. How to think about the nuances of PSA screening tests. About our guest: David F. Penson, MD, MPH is the Hamilton and Howd Chair in Urologic Oncology, Director of the Center for Surgical Quality and Outcomes Research and Professor and Chair, Department of Urology at Vanderbilt University. He currently maintains a clinical practice in urologic oncology at the Vanderbilt-Ingram Cancer Center. While his general research focus is clinical epidemiology and health services research across all urologic disease, his specific interests include the comparative effectiveness of treatment options in localized prostate cancer and the impact of the disease and its treatment on patients' quality of life. Key Moments: 6 minutes: What is CER and why does it matter? “Comparative effectiveness research has been around forever. People have different names for it, but it's comparing the effectiveness of various interventions for a condition. I've been focused in prostate cancer, so a lot of what I'm focused on is comparing the effectiveness of surgery and radiation and, for that matter, active surveillance in outcomes in prostate cancer.” 21 minutes: How cultural differences impact stigma. “In the US, prostate cancer is much more common in Black men. And the way they respond to the diagnosis may be different than other cultural groups. Hispanic men have another way of looking at it, white men, etc. So you do have this cultural element to it too, because sexuality and body image is often tied to cultural norms.” 31 minutes: The nuances of PSA screening. “The American Urological Association just came out with new recommendations around screening and does say, discuss screening, but doesn't say everyone should be screened. They've sort of started talking about getting a PSA test in your mid-40s, because there's pretty good literature that a baseline PSA test will establish your pretest probability of clinically significant prostate cancer in your lifetime. But the other thing that they mentioned is they basically say we should probably not be doing annual screening with PSA testing, probably every other year. Because less may be more here.” This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features this PCORI study by Dr. Penson. Visit the Manta Cares website Disclaimer: This podcast is for general informational purposes only and does not constitute the practice of medicine, nursing or other professional health care services, including the giving of medical advice, and no doctor/patient relationship is formed. The use of information on this podcast or materials linked from this podcast is at the user's own risk. The content of this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Users should not disregard, or delay in obtaining, medical advice for any medical condition they may have, and should seek the assistance of their health care professionals for any such conditions. --- Support this podcast: https://podcasters.spotify.com/pod/show/manta-cares/support
PCORI's Dr. Chue brings to light the complexities & challenges of conducting research, engaging stakeholders, and implementing findings in real-world settings. About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all this. We respect Listeners, Watchers, and Readers. Show Notes at the end. Watch on YouTube Read Newsletter The same content as the podcast but not a verbatim transcript. Could be a book chapter with images. download the printable transcript here Contents Executive Summary. 1 Proem.. 2 Introducing Dr. Amanda Chue 01:37. 2 Podcast intro 02:22. 2 Health is fragile 03:14. 2 Path to young adult mental health research 03:48. 3 Evidence gaps 05:22. 3 Do comparators exist? 08:17. 4 Efficacy versus efficiency 11:29. 4 Dynamic tension - Parent engagement in research 12:52. 4 A word from our sponsor, Abridge 13:38. 5 Call to action 14:41. 5 Dissemination to those with lived experience 15:51. 5 Research results impacting clinical work or decisions 19:07. 6 Dynamic tension – CER and innovation 20:04. 6 Dissemination – sharing results 21:36. 6 Community implementation 22:51. 7 Stakeholder Advisory Panels 27:06. 7 Dynamic tensions in public engagement, dissemination, and implementation 30:09. 8 PCORI and public engagement 30:53. 8 Policy making 34:17. 9 Reflection 37:18. 10 Podcast Outro 39:26. 10 Episode Executive Summary PCORI's Dr. Chue brings to light the complexities and challenges involved in conducting research, engaging stakeholders, and implementing findings in real-world settings. It emphasizes the need for long-term partnerships with community organizations and the importance of addressing disparities in research representation. The dynamic tensions in various research and implementation aspects underscore the need for thoughtful and creative approaches to address complex healthcare issues effectively. Proem Image created in DALL.E I treasure the dynamic tensions in life—for example, privacy and community, pathological optimism and catastrophizing, early adopter and skeptic. While not a researcher, I am personally and professionally neck-deep in research. Yet, despite my commitment to research, I'm a skeptic. Who's it for? How can it aid decision-making? Who's included in the research question, process, analysis, and dissemination? Where are the vested interests? Do we already have evidence yet have little will to implement, or does the bureaucracy or culture impede action? I will step in and highlight some dynamic tensions as the conversation flows. What about research funding sources? What's their perspective? What are the dynamic tensions? I asked my cronies at PCORI (Patient-Centered Outcomes Research Institute) to introduce me to a staff scientist specializing in comparative effectiveness research funding for emerging adults with mental illness. Dr. Amanda Chue kindly agreed to speak with us. Image created on DALL.E Introducing Dr. Amanda Chue Dr. Amanda Chue received a BS in human development from Cornell University and a Ph.D. in clinical psychology from American University. She is a Program Officer for the Clinical Effectiveness and Decision Science program at the Patient-Centered Outcomes Research Institute (PCORI). In this role, she manages a portfolio of comparative clinical effectiveness research awards focused on meaningful outcomes for patients. Her portfolio includes several studies on clinical strategies for managing and reducing lo...
Deepthy Varghese, MSN, ACNP, FNP, of Northside Hospital for this discussion of An Exercise in Physical Activity Program in Patients with Atrial Fibrillation. She is joined by guests Gregory M. Marcus, MD, FHRS, of the University of California, San Francisco and Mehak Dhande, MD, of the University of Pittsburgh Medical Center. https://www.hrsonline.org/education/TheLead Host Disclosure(s): D. Varghese: No relevant financial relationships with ineligible companies to disclose. Contributor Disclosure(s): G. Marcus: Honoraria/Speaking/Consulting Fee: InCarda Therapeutics, Johnson and Johnson; Research (Contracted Grants for PIs Named Investigators Only): NIH, Baylis Medical Company, PCORI, TRDRP; Stock Ownership (Publicly Traded): InCarda Therapeutics M. Dhande: No relevant financial relationships with ineligible companies to disclose.
This episode features a sit down with Chris and Colleen where they cover upcoming compliance deadlines for PCORI and Form 5500 filings.
Dr Herndon, former Medicaid CMO: challenges faced to improve mental health care for emerging adults. Better support systems for their transition to independence About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all this. We respect Listeners, Watchers, and Readers. Show Notes at the end. Watch on YouTube Read Newsletter The same content as the podcast, but not a verbatim transcript. Could be a book chapter with images. download the printable transcript here Contents Proem.. 2 Podcast intro. 3 Meet Dr. Mike Herndon. 3 Health is Fragile. 3 Mental Illness in family practice. 3 Readiness to manage mental illness in practice. 4 State Medicaid Director 5 Levers of power 6 Aligning incentives 6 Minor success, at best 7 A word from our sponsor, Abridge. 8 Call to action. 8 Family Advocacy. 9 Not easy being an emerging adult 10 Reflection. 11 Podcast Outro. 11 Episode Proem According to the Commonwealth Fund, in 2016, spending in the US on behavioral healthcare was almost $160 billion, with 58 percent of all behavioral health spending being paid for by Medicare and Medicaid. According to SAMHSA, The Substance Abuse and Mental Health Services Administration, Medicaid is the largest payer in the United States for behavioral health services. Medicaid accounted for 26 percent of all behavioral health spending in 2009. Behavioral health is a term for mental health and substance use disorder conditions to differentiate from physical health. As a clinician, I seldom met a person with chronic physical health issues who didn't also have behavioral health issues. I don't know how meaningful statistics are, except to say a lot of people have behavioral health diagnoses in their records. It costs them, their families, and communities a fortune, and government health insurance pays a significant proportion of those direct costs. Podcast intro Welcome to Health Hats, the Podcast. I'm Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this. Meet Dr. Mike Herndon Health Hats: I invited my friend and colleague, Dr. Mike Herndon, recently retired Chief Medical Officer for the Oklahoma Healthcare Authority, Medicaid, to chat with us about Emerging Adults with Mental Illness. Mike, thank you so much for joining me. Mike Herndon: You bet, Danny. Happy to be here. Health Hats: Thank you. My friend, Dr. Mike Herndon, and I have done quite a bit together over the years, mainly through PCORI, the Patient-Centered Outcomes Research Institute. We sat on an advisory panel together, then you were appointed to the PCORI Board of Governors, and I came on the board a few years later. You were my Board orientation buddy and helped me navigate and reduce the shock of the experience. I appreciate it. Let's just jump right in. Mike, when did you first realize that health was fragile? Health is Fragile Mike Herndon: That's an easy answer for me. I grew up in rural Oklahoma. In the summer between my sixth and seventh-grade years, I was 12 years old, and my mom had a pituitary tumor. That hormonal gland in the brain had gotten so large it caused terrific headaches. She had double and blurred vision and had to have a craniotomy, and brain surgery, to remove the tumor.
We believe in the power of the patient voice to provide inspiration and hope to others in similar situations. That's why we were thrilled to sit down with John Linnell, an individual who lives with COPD and who, since his diagnosis, has been advocating for COPD awareness, resources, and research. John Linnell, COPD Patient John was diagnosed in 2005 and his journey led him to key roles in advocacy, in which he is active. John is a member of the Board of Directors for the US COPD Coalition and is an Advocacy Captain for the COPD Foundation. He serves on the Executive Board of Directors for EFFORTS (an international support group for the COPD community), a member of the Governing Board for the COPD PPRN (Patient Powered Research Network), and the Board of Directors of Right2Breathe, a nonprofit emphasizing early diagnosis and patient education. John also sat as a Consumer Reviewer for CDMRP (Congressional Directed Medical Research Programs) for the Department of Defense and now mentors new Consumer Reviewers. John was a Co-investigator for a 3-year PCORI-funded study at Johns Hopkins: “Impact of a Peer Support Program Amongst COPD Patients and Their Caregivers”. CMS/Medicare recently appointed John to a term as a patient representative on a Technical Expert Panel for the 2024 Impact Assessment of CMS Quality and Efficiency Measures. He also was asked to join the Patient Engagement Collaborative for the FDA. He also is a Patient Scholar for DIA (Drug Information Association) and spoke at their annual international conference this past year. In addition, John is a frequent speaker and/or panel member at numerous national conferences dealing with both respiratory issues as well as advising digital health start-up enterprises as a Patient Advisor.
Thoughtfulness, frustration, and caring of PCP, Dr. Bonnie Engelbart managing referral, consultation, and stretching resources but still, not enough bodies. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player This episode can be watched on YouTube Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 1 Podcast intro 01:26. 2 Health is fragile 02:00. 2 Primary care practice at Cambridge Health Alliance 05:31. 3 Screening for mental illness 06:29. 3 The referral maze 08:10. 3 Team building 11:40. 4 Toll on staff 14:02. 4 The burden of stigma, lack of resources, barriers to continuity 14:41. 5 Need more bodies 17:00. 5 Care partners 18:31. 5 A word from our sponsor, Abridge 19:27. 6 Complex time 20:09. 6 Changes over the past twenty years 21:27. 6 Self-medication 22:56. 7 Questions for emerging adults 24:03. 7 Questions for administrators 25:27. 7 The burden of cost to families 27:19. 7 Culture and language 28:09. 8 Reflection 30:35. 8 Next #7 Emergency medicine: We're not trained for this 32:25. 9 Podcast Outro 33:02. 9 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email YouTube channel DM on Instagram, Twitter, Mastadon to @healthhats Credits Music on intro and outro by permission from Joey van Leeuwen, Drummer, Composer, Arranger including Moe's Blues for Proem and Reflection Web and Social Media Coach, Dissemination Kayla Nelson @lifeoflesion Intro photo of Vulture Couple by Rich Rieger used with permission Photo of Swaziland by Ndumiso Silindza on Unsplash Images of emerging adult with mental illness and community collaboration from DALL.E The views and opinions presented in this podcast and publication are solely my responsibility and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors, or Methodology Committee. Danny van Leeuwen (Health Hats) Sponsored by Abridge Inspired by and grateful to Laura Zucker, Mike Herndon, Sue Donnelley, Luc Pelletier Links World Health Organization (WHO) Adolescent Mental Health Most mental health concerns, especially for emerging adults, first present in primary care, placing them in a critical role for addressing these concerns. The PSC-17 Pediatric System Checklist is a brief questionnaire that helps identify and assess changes in emotional and behavioral problems in children When kids turn 18, we transition to a form called the AWQ, Cambridge Health Alliance Adult Wellbeing Scale, which screens for depression, anxiety, and substance use. National Alliance of Mental Health: Kids, Teens, and Young Adults, White House Fact Sheet: Improving Access and Care for Youth Mental Health and Substance Abuse Conditions, American Academy of Family Practice (AAFP) article, Managing Behavioral Health Issues in Primary Care: Six Five-Minute Tools. Related podcasts Series: Emerging Adults with Mental Illness Pediatric Transition to Adult Care | Danny van Leeuwen Health Hats (health-hats.com) About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to ad...
Learn more about Jeffrey Pfeffer and where you can buy or listen to his books: JeffreyPfeffer.com Episode 16 – Dr. Laura Esserman, Professor of Surgery and Radiology UCSF, Director of the UCSF Breast Care Clinic Dr. Laura Esserman is a leading figure in the transformation of American medicine. Named one of Time Magazine's 100 Most Influential People in the World, Laura is dedicated to increasing the speed at which we learn about new cancer drugs and treatments. She discusses her transformation into becoming a more effective version of herself through storytelling and cultivating empathy with opponents. Join us and learn about: Adjustments in her behavior that make her extraordinarily effective The importance of knowing what you want to accomplish over being likable Realizing to become successful, she needed to get out of her way The listening and give-and-take skills that enable effectiveness Allowing the space for people to think differently than yourself Finding common ground to accomplish shared goals How fear of criticism can impede problem-solving Patient-centered care with a ‘no risk, no change' philosophy Going to the mat and doing things for others The principles she lives on Her lesson with running a mammogram van in San Francisco How empathy and understanding aid negotiations Using the press and publicity to make change happen Why storytelling is paramount for learning Her goal of bringing personalized medicine to trials and patients The unique skills she brings to her patients that will surprise you GUEST BIO Dr. Laura Esserman is Professor of Surgery and Radiology at the University of California, San Francisco (UCSF) and director of the UCSF Breast Care Clinic. Her work in breast cancer spans the spectrum from basic science to public policy issues, and the impact of both on the delivery of clinical care. Dr. Esserman is recognized as a thought leader in cancer screening and over-diagnosis, as well as innovative clinical trial design. She led the creation of the University of California-wide Athena Breast Health Network, a learning system designed to integrate clinical care and research as it follows 150,000 women from screening through treatment and outcomes. The Athena Network launched the PCORI-funded Wisdom Study, which tests a personalized approach to breast cancer screening in 100,000 women. She is also a leader of the innovative I-SPY TRIAL model, designed to accelerate the identification and approval of effective new agents for women with high-risk breast cancers. In 2020, she got FDA approval for an I-SPY COVID trial, designed to rapidly screen and confirm high-impact treatments to reduce mortality and time on ventilators. Produced by The MunnAvenuePress.com
Mission Alliance (PTSD-related PCOR/CER topics related to COVID-19 Project)(PCOR and CER) Patient-Centered Outcomes Research and Patient Engagement in ResearchMission Alliance: Engaging veteran communities to capture & prioritize PTSD-related PCOR/CER topics related to COVID-19Project SummaryBackground: Social isolation during COVID-19 has impacted mental health/well-being of vulnerable populations, such as veterans with posttraumatic stress disorder (PTSD). These ramifications must be explored to improve veterans' mental health/well-being and prioritize emergent critical issues at this unprecedented time.Project Collaborators: MA Unit members are affiliated with Florida Atlantic University, University of Rochester Medical Center, Emory University, Oregon Health and Science University, and the University of Minnesota Duluth. The PTSD expert consultant is a Veteran affiliated with the University of Texas Health Science Center at San Antonio and is the Director of the South Texas Research Organizational Network Guiding Studies on Trauma and Resilience Consortium (STRONG STAR). The Veteran consultant is director of the Grey Team and participates in Veteran-focused research. Canines Providing Assistance to Wounded Warriors®(C-P.A.W.W.) and PTSD Foundation of America are additional community partners. MA National Convening Schedule(10Mar20223 1300-1430 Eastern Standard Time)1300-1310: Introduce MA project & team and timeline (BAP)/introduce PCORI speaker (CKP)1310-1325: PCORI speaker: discuss PCOR/CER and importance of involving veterans & key community stakeholders1325-1330: Q & A for PCORI speaker1330-1350: Alan discuss STRONG STAR/Veteran participation in research1350-1400: David Kirkland (US Army Reservist) discuss Grey Team (mission, how Grey Team helps veterans, importance of research)1400-1405: South team/Social Isolation1405-1410: West/loneliness 1410-1415: Midwest/mental health/well-being1415-1430: Q & A/Wrap-up1430:1500: Networking (Open to individuals who would like to network)Those involved: Dr. Beth Pratt, Dr. Cheryl Krause-Parello, Wendi Niad, Dr. Alan Peterson, Dr. Patrick Walsh, Ralph Presciutti, Dr. Viann Nguyen-Feng, Dr. Basilia Basin, Aaron Seibert, Nicholas Giordano, JP Nolan, Rigo RuizMission Alliance Links:https://www.pcori.org/research-results/2021/mission-alliance-engaging-veteran-communities-capture-prioritize-ptsd-related-pcorcer-topics-related-covid-19#project_summaryLinks:https://www.facebook.com/LoveSportsSpain01/abouthttps://pod.link/1440830329https://www.facebook.com/iconutilityservices/photos/pcb.3282304212030773/3282304082030786/https://www.youtube.com/channel/UCqvd5sUEtC9xkm7ejGNK5Zw/featuredhttps://www.facebook.com/aqseiberthttps://www.facebook.com/CombatVetVisionEmail: Aqseibert@yahoo.comThe Warrior Built Foundation - https://warriorbuilt.org/The PTSD Foundation of America - https://ptsdusa.org/Virtual Office(Come see me) Virbella.comSponsorsSitch Radio - https://sitchradio.com/If you would like to become a sponsor or advertiser Call Sitch Radio (714) 643-2500 X 1I part of the solution or the problem.PTSD FOA Warrior Group Chaptershttps://ptsdusa.org/about-us/chapters/
Move knowledge, not patients." That, my friends, is the definition of root-causing the immense supply/demand imbalance we see in ABA ... and across healthcare. And that's exactly what Alicia Curran and Dr. Kristin Sohl are doing with Project ECHO autism. I first met them for an ECHO training in New Mexico in 2019 and I was ENRAPTURED by how they're turning medicine on its head by focusing on empowering front-line clinical teams. For instance, imagine a program that trains/supports pediatricians to make effective autism diagnoses ... or nurse practitioners to work with people experiencing kidney failure. Because it just doesn't seem possible - nor practical - to increase the number of psychologists and nephrologists. But with ECHO? Anything is possible. Enjoy, kind listener!Resources:Alicia on LinkedIn: https://www.linkedin.com/in/alicia-brewer-curran-6a2a88260/>Kristin on LinkedIn: https://www.linkedin.com/in/kristin-sohl-md-faap-4964aa8/>Assert: https://notables.vkcsites.org/2022/01/malow-receives-pcori-engagement-award-to-build-capacity-for-research-in-idd-through-knowledge-sharing-model/https://vkc.vumc.org/assets/files/studyfinder/malow-PCORI-jan22.pdfECHO Autism Communities: https://echoautism.org/Building Better Businesses in ABA is edited and produced by KJ Herodirt Productions Intro/outro Music Credit: song "Tailor Made" by Yari and bensound.com Give us a rating at Apple Music, Spotify or your favorite podcast channel: Apple: https://podcasts.apple.com/za/podcast/building-better-businesses-in-aba/id1603909082 Spotify: https://open.spotify.com/show/0H5LzHYPKq5Qnmsue9HTwn Check out Element RCM to learn more about billing & insurance support for Applied Behavior Analysis providers Web: https://elementrcm.ai/ LinkedIn: https://www.linkedin.com/company/element-rcm Instagram: https://www.instagram.com/elementrcm/ Follow the Pod: Web: https://elementrcm.ai/building-better-businesses-in-aba/ LinkedIn: https://www.instagram.com/buildingbetterbusinessesaba/ Instagram: https://www.instagram.com/buildingbetterbusinessesa...
Episode 41 In our final episode of 2022 we had the pleasure to be joined by Pamela Duncan. Pam is a leading expert in stroke, neurologic recovery, aging and patient reported outcome measures and widely recognized for her efforts to reengineer post-acute care services and recovery following stroke. She develops consumer-oriented assessments to improve patient outcomes by guiding real-time clinical decision-making and recommendations for self-management, medical and social services. The Compass CP platform was created based on insight gained from the COMPASS study, led by Wake Forest University School of Medicine and The University of North Carolina and conducted in 40 hospitals and with community partners across North Carolina. The study was funded through a $14 million, five-year award from the Patient-Centered Outcomes Research Institute (PCORI), an independent, nonprofit research funding organization authorized by Congress in 2010. COMPASS compared the health status of stroke patients who receive conventional post-hospitalization treatment to that of patients who receive comprehensive care based on a model developed by a team of physicians, nurses, therapists, pharmacists, health system and human services leaders, and patient and caregiver stakeholders. Because of her outstanding contributions to the investigation, management, mentorship and community service in the stroke field, Duncan is a 2020 recipient of the American Stroke Association's David G. Sherman Lifetime Achievement Award. She is the first woman to ever be awarded this honor. Show Credits: Music intro credit to Jake Dansereau, connect at JAKEEZo on Soundcloud @user-257386777. Our intro welcome is the voice of Caroline Goggin, a stroke survivor and our first podcast guest! Please listen to her inspiring story on Episode 2 of the podcast. Thank you Caroline! Until next time, be sure to give the show a like and share, +follow and connect with us on social or contact us to support us as a show sponsor or become a guest on the Know Stroke Podcast. Connect with Us and Share our Show on Social: Know Stroke Website Twitter Facebook Instagram YouTube Linkedin
This episode discusses depression in people on dialysis in light of the PCORI-funded ASCEND study. Major depressive disorder is four times more common in people undergoing long-term dialysis than in the general population and is associated with greater non-adherence, higher healthcare utilization, poorer quality of life, and higher mortality. A panel discussion puts these results in perspective and discusses next steps in the treatment of depression from the vantage point of the study team.
Chat with Isabelle Barbour, Truth teller Consulting, about partnerships, community advocacy, privilege, disparities, trust, and being your best self. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem.. 2 Introducing Isabelle Barbour 01:11. 2 Intro 02:23. 2 Health Improvement Collaborative of Southeast Connecticut 02:59. 2 Writer's Block & SCORE 04:59. 3 Collaborations 06:32. 3 Partnership grants - Mini-grant Funding 08:14. 4 Partners, grantees, power - Be the change 11:25. 4 Needing help, asking for help, accepting help 14:11. 5 Vulnerability, humility 17:50. 6 Earn respect. Practice being our best selves 22:20. 6 Disparities in research 26:14. 7 Leveraging privilege 27:25. 7 I already drank the Kool-Aid. Now what? 31:23. 8 Partnerships between communities and researchers 33:48. 8 Move at the Speed of Trust 36:59. 9 Maternal health 39:32. 10 Vulnerability and partnerships 40:52. 10 Truth Teller Consulting 42:17. 10 Take a step back to reflect 43:02. 10 Keeping my ear to the ground 44:32. 11 Managing with my brain as it is 46:30. 11 Nourishing the brain 48:50. 12 Try something else 50:04. 12 Reflection 53:12. 13 Outro 13 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Intro and outro music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Sponsored by Abridge Inspired by and grateful to Ellen Schultz, Neely Williams, Fatima Muhammed Ighile, Jan Oldenburg, Jodyn Platt, Dr. Lisa Masinter, Dr. Michele Whitt, Kristin Carman Links Truth Teller Consulting Health Improvement Collaborative of Southeastern Connecticut. Robert Wood Johnson Foundation Writer's Block SCORE PCORI solutions to create, catalog, and disseminate public engagement tools Related podcasts https://health-hats.com/pod133/ https://health-hats.com/minister-to-community-spirit/ https://health-hats.com/trust-willing-to-be-vulnerable-worth-the-investment/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com.
Music in my life. Adjusting to changing abilities with my bari sax. An experiment in multimedia sharing. Listen, watch, read. Best to watch the YouTube video. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player This episode is best watched on YouTube Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Danny on Bari sax music playing in the background, sitting, using a strap to hold the horn Proem Playing and not playing with Multiple Sclerosis 03:53 Eureka, a Sax Stand 06:06 Reading sheet music with double vision 10:10 Need help, ask for help, get help 14:12 Looking ahead 15:13 Lechuga Fresca 16:24 Prequel 18:11 Cold Sweat 21:20 Please comment and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Drummer, Composer, Arranger Web and Social Media Coach Kayla Nelson @lifeoflesion The views and opinions presented in this podcast and publication are solely my responsibility and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee. Danny van Leeuwen (Health Hats) Sponsored by Abridge Inspired by and grateful to Jeff Harrington, Joey van Leeuwen, Kayla Nelson, Kristina Johnson, Larry Mazza, Peter Cicco, Dan Fox, Glen Alto, Josh Rosenstock, Betsy Neptune, Andrea Condit, Cornell Coley, Stephen Debenectis, Jon Fraser, Bruce Hoppe, Gabrielle Pitman, Eric Solomon, Ryan Vasios, Karen Welling, Harry Wolfson, Cynthia Meyer, Cherie Binns, Carol Band, David Bourne. OMG, what a list! Links Enabled Disabled Project Lechuga Fresca - Cool as a Cucumber Morningside Studios Second Wind Movement Al Gallodoro Related podcasts https://health-hats.com/listen-to-the-music/ https://health-hats.com/pod134/ https://health-hats.com/pod146/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. I'm the Rosetta Stone of Healthcare. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Danny on Bari sax music playing in the background, sitting, using a strap to hold the horn Proem I recently joined the Enabled Disabled Community, hosted by Gustavo Serafini. They asked me to tell them more about my sax playing as a person with disabilities. Aha, a podcast episode! What a challenge – audio, video, and print media all in one for people who follow me and those who don't know me. Here goes. For those who don't know me, I'm a bald, hat-wearing, two-legged, cisgender,
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