Empowered Patient Podcast

This is a conversation with Nicole Andrews, a patient with LGSOC and STAAR Ovarian Cancer Foundation Board Chairperson, and Dan Paterson, President and CEO of Verastem Oncology. Low-grade serous ovarian cancer is a rare and slow-growing ovarian cancer that is often misdiagnosed. Verastem Oncology is developing a targeted treatment for LGSOC and working with the STAAR Foundation to inform researchers about the disease and ways to improve treatments. Nicole was finally diagnosed with LGSOC after 18 months of unexplained symptoms, and her role at the STAAR Foundation is to raise awareness and funds to support research. Nicole explains, "I have since learned that low-grade is difficult for pathologists who aren't used to seeing it and don't know the intricacies of diagnosing. My surgeon finally said I have to get this right because it changes treatment." "So, she asked permission to send this to a specialty cancer center. And we did. Once that happened, they came back pretty quickly and said this was low-grade serous ovarian cancer. They were used to seeing it. They had high volume cases of reading pathology reports and, therefore, were able to diagnose and diagnose it." Dan elaborates, "The majority of ovarian cancers are so-called high-grade, and that's when you hear about treatment with chemotherapies like platinum. A new class of drugs called PARP inhibitors came out in the last couple of years. And I think when you generally hear about ovarian, it's high grade. It was only in the last couple of years that the World Health Organization and, more recently, the FDA, based on some of our work, recognized it as a distinct and different disease because it acts very differently. It tends to occur in younger women, and it's slower growing, which, on the face of it, you would think is a good thing. And I think a lot of times, and we've heard anecdotes, and Nicole can probably speak to this, where women have said, oh, well, you have the good ovarian cancer. The downside of a slower-growing tumor is it's harder to treat." #VerastemOncology #STAARFoundation #LGSOC #LGSOCAwareness #LowGradeSerousOvarianCancer #Cancer #RareDisease verastemoncology.com STAAR Foundation Download the transcript here

Maria Perrin, President and Chief Strategy Officer at PPL, is focused on expanding access to self-directed and whole person care allowing people to stay in their homes and receive the services they need to maintain a good quality of life. Consumer-directed care programs funded by Medicaid allows disabled and the aged populations to choose their own caregivers they know and trust to provide personal services like meals, dressing, and transportation. PPL provides training, technology, quality assurance, and other support to help consumers and their caregivers participate in these programs. Maria explains, "So the programs differ from state to state. If someone needs care in their home, say they had an injury or they need help because of a disability or certain access, they can get help for people to, for example, come in, prepare meals, help them get dressed, and for bathing. Or if they're relatively healthy and can do that themselves, some programs support things like meal services, transportation, occupational assistance, and other goods and services they may need to thrive." "We see a lot of health disparities. I know that many people who work in healthcare talk about this, and you have communities that are underserved. They don't have enough home health workers in their community to serve them. Often, they don't have facilities that speak the language they speak or consider their religious or cultural implications. Therefore, the consumer-directed care program allows people to choose the caregiver that meets their needs and to have them deliver the services within their home." "That's a little different than, for example, a home health agency model whereby the agency will choose the caregiver they get, and that person may or may not be trusted by the individual consumer. They may not speak the same language as the individual consumer. So this elevates the care that the consumer is getting to what they specifically need and establishes trust by enabling them to choose the caregiver. A caregiver may be a family member, it might be a church member, a friend of the family, someone who's in the community who they already know and trust, and who can best serve that particular consumer." #PPL #Healthcare #Caregivers #ConsumerDirectedCare #SelfDirection #AtHomeCare #CommunityBasedSupportServices #LongTermServicesSupports #Medicaid PPLfirst.com Download the transcript here

James Grover, President of Vyne Dental, addresses the friction and inefficiencies in the dental healthcare system to facilitate payments and improve patient outcomes. The dental care environment is fragmented and lacks coordination between patients, dentists, and payers. Vyne Dental works with dental practices to streamline the revenue cycle management process, improve patient communication, and ensure timely and accurate payments. James explains, "We sit at the commerce crossroads between patients, practices, and payers, basically helping patients to pay, helping payers to pay, and helping practices to get paid for the services that they're rendering." "Then in the payer space, they're trying to avoid fraud. They also have certain places where there are plans that approve certain things but don't allow for others, and they need to do their work. Unfortunately, there's a tremendous amount of waste between all three constituents. That waste results in higher prices for patients and less business success for both practices and payers." "So you have a patient who gets services and the practice is pretty much programmed to get that payment when the patient comes back in the next time. Why? Because they want their insurance to pay for it. For practices to get paid, that patient has to come back in. Well, there's a huge problem. The ADA says that only about 41% of new patient visits result in the patient returning. And so, about six in ten new patients don't return to the practice, and there is only about 85% retention of existing patients." #VyneDental #AccelerateRev #DentalBilling #RCM vynedental.com Download the transcript here

Professor Piotr Trzonkowski, CEO of PolTREG, is focused on developing cell therapies for autoimmune diseases like type-1 diabetes and multiple sclerosis using polyclonal T-regulatory cell therapy. Treg cells are key in regulating the immune system and preventing autoimmune diseases. Clinical trials are showing promise for safe and effective treatments for preventing type-1 diabetes in pre-symptomatic patients and maintaining insulin production for years after treatment in those with this form of diabetes. Piotr explains, "My initial research subject was vaccination in the elderly, and I was looking for the reasons they did not respond to the vaccine. It was initially on the flu vaccine. The same is valuable, for example, for the COVID-19 vaccine. What we found is that elderly people do not respond to the vaccines because of the high level of accumulation of T-regulatory cells. T-regulatory cells can suppress immune responses, which is bad for the elderly." "A very simple answer would be if you compare the immune system to kind of an army. The majority of the army fights with enemies. In the case of the immune system, these enemies are bacteria and viruses that attack us, and in each and every army, there must be police who keep an eye on the soldiers. So, the soldiers really fight with the enemies and do not fight with the self-tissue." "The T-regulatory cells are a kind of military police of the immune system, which really keeps an eye on the immune system. So, the immune system fights with bacteria and virus cells and does not touch our own tissues. We call it in immunology, keeping the immune tolerance. So, proper immune tolerance is very dependent on T-regulatory cells. We say that this is an immune-dominant mechanism. T-regulatory cells are present in each and every process where the immune system responds to the bacteria. So, we successfully fight the infection, and at the same time, we do not destroy ourselves." #PolTREG #TregCells TRegulatoryCells #CellTherapy #AutoimmuneDiseases #Diabetes #Type1Diabetes poltreg.com Download the transcript here

Cecil Pineda, Senior VP and Chief Information Security Officer at R1 RCM, is focused on integrating robust cybersecurity into the revenue cycle management process. When healthcare organizations are hit with ransomware attacks, they must respond rapidly and accurately communicate with internal and external partners. Long-term strategies include controlling network access, backup/recovery testing and educating personnel in order to limit damage from attempts to invade the network. Cecil explains, "I think most organizations, not just R1, many organizations have made that decision beforehand whether to pay or not. And that decision is not easy. That's something that takes into account several factors, starting from patient safety to protecting customer data and being able to go back into operations. So there are a lot of things that they can do, the analysis before making that call. So, beforehand, a lot of organizations have their stance on payments." "Another key area besides speed is communications. This is something that organizations should focus on. You don't want patients, relatives of your patients, business partners, shareholders, and other groups to learn it from social media. Going out there quickly with the proper level of messaging and the right amount is key in communicating with your partners." "I would say that in the first couple of hours, you probably need to make sure that you can communicate quickly at the right level and with the right information without causing any panic. It's good to be able to reach out quickly to your partners before they get the wrong information from social media." #R1RCM #CyberSecurity #CyberAttacks #DataSecurity #Ransomware #DataProtection #InformationSecurity #RCM R1rcm.com Download the transcript here

This is a conversation with Dr. David Amaral, a distinguished professor at the MIND Institute and scientific director of Autism BrainNet, and Dorothy Frisch, an activist and supporter of the program. Autism BrainNet is funded by the Simons Foundation to collect and study postmortem brain samples from individuals with autism to understand the neurological basis of the disorder better. Currently, there are no biomarkers for autism, so studying the brains and accomplishments of those who had autism can lead to a better understanding of the abilities and challenges seen on the autism spectrum. David explains, "We went to the Simons Foundation and, with their support, have established a network in the United States. We have three collection sites: one at the UC Davis Mind Institute in Sacramento, one at UT Southwestern in Dallas, Texas, and one at the Mass General Hospital in Boston, where a postmortem brain donation can be sent. Those brains are then prepared in ways that will facilitate all kinds of research both now and in the future. We have developed this resource to foster autism research throughout the world. What we are seeing now that we've just celebrated our 10th anniversary is that we've collected nearly 400 brain donations so far, and we're seeing an increasing demand from researchers worldwide to get access to that resource." Dorothy elaborates, "I was the main support person for my older cousin, Gregory Blackstock, for a couple of decades. He needed a lot of executive function help. He lived on his own but couldn't make critical decisions very well. As long as everything went along without any hitch, he was generally fine. But as he got older and experienced more physical infirmities, then I needed to step up more. So then he was very obviously autistic, so it was kind of peripherally interesting to me." "One of his savant traits was that he was an incredible artist. He also spoke many languages that he picked up by ear. He had a perfect pitch and learned the accordion, but he could easily transfer that information to playing the organ and the piano. He had almost total recall of anything that crossed his path that interested him. And so, just being around him and being involved with furthering his artistic career gave me further insights about the people I met who were interested in autism." #AutismBrainNet #BrainDonation #AutismResearch #Autism #BrainResearch autismbrainnet.org Download the transcript here

Dr. Jose Luchsinger, Vice Chair for Clinical and Epidemiologic Research at Columbia University, is leading a phase 2 clinical trial of a prodrug Benfo that aims to raise the level of thiamine in the brain to improve memory and function in people with early Alzheimer's disease. This effort is based on research showing that Alzheimer's is associated with impaired thiamine processing in the brain, even if thiamine levels in the blood are normal. The phase 2 clinical trial for the drug is testing the ability to overcome the mishandling of thiamine in the brain by patients with mild cognitive impairment or mild dementia with evidence of amyloid. Jose explains, "So this approach is based on decades of study by Dr. Gary Gibson, who's at the Burke Institute in New York and Cornell University in New York. What he has found, particularly in animal models of Alzheimer's disease, is that these animals have memory problems that are related to the ability to process thiamine in the brain, which is a key vitamin that is needed for proper function of the brain. The hypothesis that he came up with was that if you could somehow fix the misuse of the thiamine in the brain, that maybe you could improve memory symptoms and also functional problems in people who have Alzheimer's disease. He tested first in animals, a prodrug called benfotiamine that after ingestion it, increases thiamine levels a hundred times in the blood. And he did observe in animals that the thiamine handling deficiency in the brain was fixed, and that memory and other characteristics in these animals improved." "One thing that I want to explain is that we're not saying that people with early Alzheimer's disease have low thiamine, which is vitamin B1 in the blood. What we're saying is that because of the Alzheimer's disease, their brains are not handling the thiamine that there is in the blood, even if it's at normal levels, in the correct way. What we're doing is, and what we're hypothesizing is that by increasing the thiamine levels a hundred times with this prodrug benfotiamine, we will overcome the mishandling of the thiamine in the brain, which has bad effects on brain metabolism and memory, etc." #BenfoTeam #Alzheimers #AlzheimersDisease #MCI #MildCognitiveImpairment #MemoryLoss #ClinicalTrials #Memory #VitaminB1 #Thiamine benfoteam.org Download the transcript here

Dr. Michael Sherling, Co-Founder, Chief Medical Officer, and Strategy Officer at ModMed, aims to save time for physicians and patients by reducing administrative burden through technology. Their AI-based solutions focus on automating mundane tasks like fax routing and documentation and can passively transcribe doctor-patient conversations to generate structured notes. The interface is designed to be simple and unobtrusive, minimizing extra clicks or steps for the doctors to review and accept the AI's recommendations. Michael explains, "Our approach to AI is focused on curing the drudgery of healthcare. What I mean by that is using any kind of tool to reduce the burden of documentation for staff, providers, and people in the back office. That's really what we're focused on. We're not so focused on how to improve diagnoses or any of the clinical aspects of healthcare but more on the administrative burden." "We're still in the development phase of our AI strategy, but there are two products that we're pretty far along on. One is around AI fax routing. It's how we can basically recognize faxes that come in and then route them to the correct patients and the correct category in the chart. It's amazing today that medical practices in 2024 rely on faxes as much as they do, but they do." "The truth of the matter is there's just so much burden on doctors. If they have a 15-minute visit, they may be spending half the time or more just trying to capture all the information. Some of it has to do with the patient's complaint in front of them, but some is just administrative stuff. We're trying to reduce that so that doctor-patient relationship can be center stage. How is it different? Well, our solution is on an iPad, which I think is great because it's unobtrusive. It's a great form factor that brings the patient and the doctor together. The model itself is specialty-specific." #ModMed #Healthcare #HealthTech #AI #ArtificialIntelligence #EHR #ElectronicHealthRecords #Physicians #PatientExperience modmed.com Download the transcript here

Dr. Eric Siemers, Medical Officer at Acumen Pharma, is developing a monoclonal antibody called sabirnetug that targets a specific toxic form of amyloid beta, Aβ oligomers. These oligomers are now believed to be a key driver of neuronal damage in Alzheimer's disease. The drug is in phase 2 clinical trials to evaluate its ability to slow cognitive decline in early-stage Alzheimer's patients and demonstrate the accuracy of biomarkers in identifying pathology before symptoms appear. Eric explains, "We've identified, and this is a monoclonal antibody, a monoclonal antibody with a unique mechanism of action in that it targets what are called Aβ oligomers. And without going into all the details, these Aβ oligomers are now really felt to be the toxic species, the ones that cause the neurons to die, and the two drugs that have recently gotten approval sort of indirectly get at those toxic species, maybe one more than the other. But in our case, we're directly targeting what we think is the most toxic species. And so the progress in the field is wonderful, and nobody can say that it's not, or take anything away from that, but nobody's cured the disease either. Now we know we've got a toehold, we know an approach, and Acumen is using an antibody because of this unique target. We think of it as a next-generation treatment for Alzheimer's disease." "We've known about these Alzheimer's plaques for a long time, but what's more recent is understanding some of these intermediate species. And so these Aβ oligomers we target are oligo, meaning a few. So, anywhere from 2 to 200 of these Aβ stuck together. The Aβs are basically inherently sticky. And so the things we're most interested in are probably 10 of the Aβ together up to say 50, which seems to be the sweet spot." #AcumenPharmaceuticals #Alzheimers #ALZ #EndALZ #Sabirnetug #DrugDevelopment acumenpharm.com Download the transcript here

Rob Abbott, CEO and Executive Director at ISPOR, the Professional Society for Health Economics and Outcomes Research, focuses on defining and measuring value in healthcare, including accessibility, affordability, effectiveness, and patient outcomes. HEOR (health economics and outcomes research) can provide data-driven insights to guide healthcare decision-making, reduce bias in research, and consider a broader range of factors like social determinants of health. This can improve treatment adherence, align therapies with what matters most to patients, and support the evaluation of technology used for treatments and predictive analysis of new therapies. Rob explains, "I'm excited at both the legacy of work that health economics and outcomes research has contributed to, but I'm particularly excited about the extent to which health economics and outcomes research can provide data-driven insights to highlight health interventions that provide the best health outcomes for the investment made. This is good for managing the expenditure of public resources. Still, even more so, data-driven insights can help us lead to better health outcomes, better treatment protocols, and better health outcomes for patients." "As health economists and a professional society representing health economists and outcomes researchers, I think we know that historically, we have defined value quite narrowly in terms of a person's physical health, for instance. But we know that increasingly the concept of whole health or a more holistic approach to health is gaining a lot of traction. So, we are actively engaged in expanding the definition of health to include access to housing, social connections and networks, healthy food and lifestyle choices, and things of that nature. So, I think we are beginning to bring some new ideas to the table in terms of how we think about health." #ISPOR #Patients #Healthcare #DigitalHealth #GlobalHealth #HEOR #RWE #HealthEconomics #HealthAI #DrugPriceNegotiations ISPOR.org Download the transcript here