Empowered Patient Podcast

Rosemary Kennedy is the Chief Health Information Officer at Connect America, where data collection, predictive analytics, remote monitoring, human intervention, and promotion of patient care circles are all part of the solution for keeping seniors out of the hospital and independent as possible. Rosemary explains, "There are probably three areas in terms of them achieving your goal and living independently and safely in your home. And you've identified one of them, this connected care management platform in the home that involves a system of integrated technologies." "We see that one in every ten admissions to the hospital are related to the fact that individuals are not adherent to their medication regimen. The second area is in interaction with their care circles and using technology for that. We have seen with COVID that individuals want to be connected to family, friends, neighbors. They want to do it in an easy way, and this includes voice video chat that they can interoperate with the people that are im

Andy Kidd MD is the President and COO and soon to be CEO of Aptinyx.  With a focus on Pain Awareness Month, Andy provides a view into the world of treating long-term chronic pain and the necessary innovations to treat the cause of chronic pain in conditions like diabetic peripheral neuropathy and fibromyalgia. Andy explains, "So we've discovered and are developing a new drug that has a new mechanism for chronic pain. And actually, it really takes that problem of what is happening in the brain head-on because our drug works in the brain, particularly in the part of the brain called the prefrontal cortex. That is really responsible for how we control and regulate our behavior, what we pay attention to, what we don't pay attention to, how our emotions are affected by things that we're sensing in the environment, and things like that. So we are really trying to tackle this part of the chronic pain problem that has been probably under-recognized in the past and for which there really aren't any good therapies righ

Jessica Magana is the Product Manager of Lightbeam Health Solutions, a population health management company. Jessica shines a light on the biggest changes coming from CMS in risk adjustment for Medicare Advantage in 2022. Organizations need to understand the technical requirements behind the way diagnosed base risk scores will be calculated and the impact of delayed healthcare due to COVID-19. Jessica explains, "Lightbeam is a platform that facilitates end-to-end population health management for our ACOs, payers, provider groups, health systems, and some other healthcare organizations. Just some highlights about the platform and what it provides are provider alignment, tools for engagement, and satisfaction rates. It allows for some two-way information sharing. It has been proven to lower utilization rates and improve risk and coding opportunities; it also helps to improve quality scores for HEDIS and Star measures." "Another important change that I think is very important is around some of the quality bonus

Dr. Hugh Rienhoff is the Founder and Chief Executive Officer at Imago BioSciences.  He and his team are developing their lead asset bomedemstat for the treatment of myeloproliferative neoplasms (MPNs) which are rare blood cancers. Hugh explains, "So MPNs, myeloproliferative neoplasms, are actually a family of diseases that include myelofibrosis, polycythemia vera, and essential thrombocythemia. And they're all characterized by an elevation of one element in the blood or another different cell type." "But they're all related in the sense that they share a family of very limited mutations. And those mutations, in one of three genes, typically arise in patients who are in their 50s or 60s and those mutations occur in the blood stem cells." "They're not hereditary, typically. They're what we call somatic mutations arising in blood stem cells. And they are called neoplastic diseases, which is a Greek name for cancer, but they typically are much more indolent than your typical bone marrow cancers, like leukemia, wh

Eric Rock is the Founder and CEO of Vivify Health and a pioneer in the application of remote patient monitoring, consumer electronics, and biometric devices combined with virtual visits to connect patients and providers outside the hospital setting. Eric explains, "Fortunately, Vivify, from our beginning days, created a solution that encompassed a connected tablet with a very unique and simple experience that spoke to the patient and connected to the provider. It made it incredibly simple regardless of your age. With an average age of 77 across our customer base, where that product was applied to, we knew this market well. And many were entering the market saying, "Okay, well, I can just give them an app to download." Well, that's a very quick failure in that population." "So, understanding the complexities of distributing devices to patients that we're all responsible for and even getting those devices returned in most cases is a big part of the services and value that Vivify brings to the table. So it is a

Craig Parker is the Chief Executive Officer at Surrozen. Their research in the Wnt pathway and proteins identified these are critical to maintaining tissues in our body and are found in tissues as diverse as the lung, intestine, liver, sensory hair cells, and the eye. The company is first targeting a patient population with a severe alcoholic injury to the liver who are not eligible for transplant but would benefit from regeneration in their liver. Craig explains, "It really starts with a signal outside the cell that gets transmitted inside the cell by this Wnt signaling pathway, which in turn activates a number of genes that are responsible for these processes, like tissue repair or embryonic development, or renewal of stem cells." "The Wnt proteins actually don't dissolve very well in the circulation, and they really only act within a few cells distance from where they're produced. What made this pathway very difficult to try to modulate for therapeutic use is that these proteins, you can't just copy one of

Dr. Richard Watson is a Co-Founder of Motient and has taken on the challenge of creating an efficient solution to solve the puzzle of how to move patients from one place to another with a focus on rural healthcare and rural hospitals. Motient was founded as a medical transport company that did air and ground transport.  They have now created Mission Control which is even more critical in this time of the Delta resurgence to help manage decisions in the care of all patients. Richard says, "The sending facility environment is different than the receiving facility. That's different from the EMS transport people. And everybody's got their head down doing solid work, but the idea that we could actually link arms and make that work better, improve the outcomes, improve patient care. I don't think that was something that was the focus. I mean, we're too busy measuring other things in the system to understand how that affects patient care. But every aspect of quality and sustainability is affected how patients move i

David Katz is the Chief Scientific Officer at Sparrow Pharmaceuticals. He is exploring the possibility of blocking the formation of intracellular steroids to reduce the side effects of steroid medicines and conditions related to the overproduction of cortisol in the body in such diseases as Cushing's Syndrome and autonomous cortisol secretion. David says, "Cortisol is made in an organ called the adrenal, and then it circulates throughout the body. And endocrinologists tend to think about the cortisol that's circulating as really being the effector of both the good effects, so immune suppression that you want in a patient who has a transplanted organ or an autoimmune disease, as well as all the bad effects." "What we recognize actually is that most of the receptors of cortisol are within the cell and that it's the steroid that's in the cell that matters. And most of that actually is made by a different pathway, by an enzyme called HSD1, which is the target of our drug." "And the magic of that is the immune sup

Hideki Garren MD Ph.D. is the Chief Medical Officer at Prothena with a mission to advance the pipeline of candidates for neurodegenerative and protein amyloid diseases, including Alzheimer's and Parkinson's.  We talk about the recent FDA approval of aducanumab and its impact on research. Hideki says, "As we've shown at the AAIC, the Alzheimer's Association International Conference last week in Denver, we highlighted two out of three of our Alzheimer's disease potential treatments. One of them is PRX012, which is our anti-Aβ antibody. The second one that we showed there was a dual, Aβ-tau vaccine. And then thirdly, we have an anti-tau antibody, which is being developed. It was not shown at the AAIC, but we're also developing that. So these three molecules we're developing for Alzheimer's disease. And this momentum has really applied to us as well." #Prothena #Alzheimers #aduhelm #ProteinAmyloidDiseases #NeurodegenerativeDiseases #Vaccines #AAIC21 Prothena.com Download the transcript here

Karen Chen is the Chief Executive Officer of the Spinal Muscular Atrophy Foundation.  With a background in drug development having worked in pharma and biotech in neurodegenerative diseases like Alzheimer's and Parkinson's, Karen brings a deep understanding of the value of treating rare diseases that are genetically defined. Karen explains, "The foundation is a little unusual as far as a nonprofit because we are really focused on our sole mission, which is to accelerate the development of treatments for SMA. And unlike other organizations, we're really not focused on raising awareness or raising funds as much as some of our sister SMA nonprofits. So we have really partnered with biotech and pharmaceutical companies to develop drugs for SMA. And SMA is one of the leading genetic causes of death in young children. It's actually the leading genetic killer of children." "So even though there are three types, four if you include the adult form of SMA, it's all caused by the same underlying missing gene. The differ

Sanjay Shukla is the President and CEO of aTyr Pharma, focusing on the extracellular functionality and signaling pathways of tRNA synthetases. The lead clinical product candidate ATYR1923 is a potential disease-modifying therapy for patients with severe inflammatory lung diseases, including interstitial lung disease pulmonary sarcoidosis. Sanjay explains, "Dr. Schimmel, for many years, has been really interested in an enzyme in all of our bodies called tRNA synthetases. These are basic building block enzymes that help us make proteins. They work inside the cell by shepherding an amino acid to a tRNA, and this, in turn, helps us make proteins. For many years, it was thought to be a kind of well-understood class of enzymes." "Dr. Schimmel discovered, and he published this in both Science and Nature papers about 12 years ago, was for some reason these enzymes break apart into fragments. Those fragments migrate out of the cell, and they travel to different tissues and organ systems in our bodies, and there they p

Dr. Elizabeth Marshall is the Director of Clinical Analytics at Linguamatics an IQVIA company, where she is responsible for clinical oversight of all healthcare projects with a focus on the application of Natural Language Processing in drug development and healthcare. NLP is a type of artificial intelligence that is concerned with the interaction between computers and human language with an ability to find linguistic patterns in unstructured data. Liz says, "I commonly work with teams of people that don't always understand the subject matter. There was one time when I was told certain corpora of patients' data had no mention of pain, which as a physician immediately made me suspicious, and a red flag." "So I dug a little deeper into the data and found the data came from rheumatology. So I knew there had to be some abbreviation or something. Something was missing. For some reason, this group decided to abbreviate pain as PX, which is not a common way of abbreviating it. So, we changed the algorithm, and as you

Dan Temple is a patient advocate for those with Spinal Muscular Atrophy (SMA) and he shares his treatment journey and actions he has taken to raise awareness about SMA.  We also talk about the drug treatments that have come onto the scene since he was first diagnosed when Dan was 2 years old.  He is now 49. Dan says, "Like I said, very important was that my lung function improved. I probably gained about ten years back from what I lost. I'm still on a feeding tube, but I couldn't eat by mouth for seven years, and the drugs helped my muscles start working better. So I can eat and drink by mouth a little bit. I don't do it a lot, but it's nice to be able to do it occasionally and have some food that I enjoy. And my hand, of course. The one finger I have is kept pretty strong. Thank God because if I lose that, I've got nothing." "In general, it's kept me from getting worse, and when the drugs came along, I was at the point health-wise where I probably didn't have a lot of time left. My lungs were getting so weak

Professor Florian Solzbacher is the Co-Founder and Chairman of Blackrock Neurotech and is focused on expanding the options, understanding, and marketing of brain computer interfaces and neuro devices. I asked Florian about their new project underway with Northwestern University and DARPA called the NTRAIN Project. He said, "The key driving force behind that project is to try and help counter the effects of jet lag and dysfunctions in the circadian rhythm. All those of us who have been traveling internationally a lot will know that it usually takes you a few days to adjust your inner clock to a different time zone that you're in." "What has been shown in initial research is that there are ways to help adjust the internal clock by essentially generating some of those same peptides that regulate our circadian rhythm. Then releasing them into the bloodstream on demand essentially sends clear clock signals through the body that allow you to adjust faster than you normally would." @BlackrockMicro #innovation #Neuro

Dr. Oleg Bess is the Founder and CEO of 4medica and a practicing OB/GYN, and a strong believer in allowing patients to have easy access to their health data in order to equalize healthcare across all categories of patients. Oleg says, "4medica's mission is really to formulate a one patient, one record paradigm, where we are able to access a number of data sources for a patient. We have the engine that is able to, on-the-fly, real-time actually, add these records into the correct chart. Even in this country where there's no unique identifier for patients, we're able to look at all kinds of demographics data for the patient and on-the-fly place that record into the correct chart." @4medica #DataQuality #DataAccess #Healthcare #HealthIT #SDOH #Outcomes #DigitalHealth 4medica.com Download the transcript here

Dr. Steve Worland is President and CEO of eFFECTOR Therapeutics a pioneer in the Genomics 3.0 category putting to work the research on selective translation regulator inhibitors (STRIs) and the key ways that cancer cells change their behavior and also change the immune system. Steve says, "There are two revolutions in cancer in the last 10 to 15 years-- targeted therapies and immunotherapies. And we think STRIs is a third way to compliment one or both of those. And really with the idea here is that you could control a cancer for a long period of time. It's very hard to completely eradicate every tumor and every cancer cell in your body.  "But if you can restore control, your immune system can control the cancer. Hopefully, patients can live for years knowing they have the disease but not having it debilitate their daily life." #eFFECTORTherapeutics #NSCLC #STRIs #cancer #SPAC eFFECTOR.com Download the transcript here

Bret Larsen is the CEO and Co-Founder of eVisit, a virtual care platform that is serving the largest health systems in the country to establish remote access for a telemedicine solution that works for patients as well as hospitals, doctors, and administrators. Bret says, "One of the things the pandemic accelerated in a big, big way was the consumerization of care. It forced us, as consumers, not patients, but consumers, to look for more options. With many physical encounters being closed or highly limited, we had to start looking for other options." "I strongly believe that the future exam room will be your living room, or your bedroom, or somewhere where you can be diagnosed and suggested treatment, and then directed to the most appropriate point of care, whether that be an asynchronous interaction, a synchronous interaction, or the physical exam room at the hospital. So, the interoperability piece is enormous. It stands to accelerate the improvement of patient outcomes in a big, big way." The eVisit Enterpr

John Zaleski Ph.D. NREMT, CAP, CPHIMS is the head of clinical informatics at Capsule. The topic is medical device integration to track progress and improve hospital care with continuous patient data collection and surveillance with prompts for action. John says, "Aside from the physics of actually connecting and pulling the data, there are all sorts of IT-related issues of how to store the data, how to correctly format the data for communication. Now, there are standards that have been developed over the years that are in use today that tend to make those types of challenges less formidable. But having data access from any location in the hospital continues to be a little bit of a challenge in terms of lower acuity settings versus higher acuity settings." "And so you have a mix of devices that do communicate, a mix of devices that communicate in a proprietary manner, and then medical devices that communicate more ubiquitously using standards like Health Level 7, various flavors of the Health Level 7 standard.

Emily Parks is a behavioral and patient advocate and the Founder of POP! --Pissed Off Patients-- with a mission to educate healthcare professionals and patients about medical PTSD. Born with a rare intestinal illness called Myopathic intestinal pseudo-obstruction, her own medical journey has led to awareness about medical PTSD and the drive to pursue a Ph.D. in medical trauma and become a patient advocate. Emily says, "I find as an adult, a lot of the trauma that I've received in the healthcare system and interacting with the healthcare system has impacted me in how I socialize with both providers and non-providers as much as friends." "Socially, it's impacted my thinking style. It's impacted my ability to trust and connect with others. And so that is what POP! is about. What is Medical PTSD, and how does it manifest in you? What are some coping mechanisms?" #MedicalPTSD #PTSD #PTSDAwareness #MedicalTrauma #PatientSafety #PatientExperience #RareDisease POPMedicalPTSD.org Download the transcript here

James McArthur Ph.D. is the CEO of PepGen and talks about applying their enhanced delivery cell-penetrating peptide technology to treat rare genetic neuromuscular diseases. The lead diseases PepGen is focused on are Duchenne muscular dystrophy, treatable with an exon 51 skipping oligonucleotide, as well as myotonic dystrophy type 1 (DM1), both rare genetic diseases with high unmet medical needs. James says. "For a long period of time, we've known that we can fundamentally change the outcome of many diseases with oligonucleotide therapeutics. But the great challenge has been getting enough of these oligos, as they're often called, into the cells where they need to do essentially the job of changing disease outcomes." #PepGenPioneers #Oligonucleotide #Neuromuscular #RareDiseases #DuchenneMscularDystrophy #MyotonicDystrophy #DM1 #DMD Pepgen.com Download the transcript here