Podcasts about personalized medicine coalition

In this episode, Amy Sylvis is joined by her dear friend Emily Kramer-Golinkoff, a remarkable advocate living with advanced cystic fibrosis (CF). Emily shares her journey, revealing how her experience with a fatal lung disease has paradoxically fostered an abundance mindset – driving her to focus on what truly matters. As the founder of Emily's Entourage, a nonprofit dedicated to accelerating research for those with rare CF mutations who do not benefit from current treatments, Emily discusses the importance of health, purpose, and resilience. She also touches on the stark realities faced by the final 10% of the CF community and emphasizes the need for equity in healthcare. Despite the challenges, Emily's story is one of profound clarity, gratitude, and a relentless pursuit of a better future for all those affected by CF. More about Emily: Emily Kramer-Golinkoff is Co-Founder of Emily's Entourage, an innovative 501(c)3 that accelerates research for individuals in the final 10% of the cystic fibrosis (CF) population that do not benefit from existing mutation-targeted therapies. She is also an internationally recognized patient advocate and speaker. Since 2011, Emily's Entourage has awarded millions of dollars in research grants, launched a now-acquired CF gene therapy company, developed a patient registry and clinical trial matchmaking program to accelerate clinical trial recruitment, and led worldwide efforts to drive high-impact research and drug development. The organization has been featured in media outlets, including New York Times, STAT, CNN, Yahoo, AOL, People, The Philadelphia Inquirer and more.   Emily has a master's degree in bioethics and certification in clinical ethics mediation from the University of Pennsylvania, where she also completed her undergraduate degree. She has given talks at The White House, TEDx, University of Pennsylvania's Annenberg School for Communication Commencement, Stanford University's Medicine X Conference, and more. Emily was named a “Champion of Change” for President Obama's Precision Medicine Initiative and is the recipient of the 2024 Personalized Medicine Coalition's Award in Leadership in Personalized Medicine, 2020 Philadelphia Magazine Luminary Award, and the 2016 Global Genes Rare Champion of Hope for Advocacy Award. Connect with Emily: https://www.emilysentourage.org https://www.instagram.com/emilysentourage https://www.facebook.com/EmilysEntourage https://www.twitter.com/EmilysEntourage https://www.linkedin.com/company/emilysentourage https://www.youtube.com/@EmilysEntourage Connect with Amy Sylvis: https://www.linkedin.com/in/amysylvis Contact Us: https://www.sylviscapital.com https://www.sylviscapital.com/webinar 0:00 Episode Preview 01:44 About Emily and her nonprofit, Emily's Entourage 06:54 Why Trikafta doesn't help The Final 10% 11:04 Equality problem in healthcare 13:58 The positive sides of CF 28:28 Emily's advice for more abundance 33:35 More on Emily's Entourage 38:28 Truth about drug development

Brad Powers, the co-founder of Cancer Patient Lab shares his insight on a multitude of topics such as: the challenges of innovating healthcare, the importance of personalized care, and Brad's personal experience with cancer.  Key Highlights: 1. Large organizations are resistant to change, making it difficult to innovate within the healthcare industry. 2. Personalized care is the future of healthcare, allowing for tailored treatments and better outcomes. 3. Patients should educate themselves, seek second opinions, and actively participate in decision-making about their care. About our guest: Brad Power is the co-founder and CEO of the Cancer Patient Lab, a patient-led learning community for cancer patients and caregivers navigating testing and treatment decisions beyond the standard of care, and founder of the CancerHacker Lab, which also helps startups that are disrupting the status quo in cancer care. In 2018 Brad was a process innovation researcher and consultant with over 35 years experience and an author of over 75 articles for the Harvard Business Review when he was diagnosed with lymphoma. Brad went through a standard course of chemotherapy, which led to "no evidence of disease" for four years, until it recently recurred. In late 2020 Brad was talking to his friend Bryce Olson, who said he had hit a wall in keeping his metastatic prostate cancer at bay. Brad suggested to Bryce that they could run a hackathon (a collaborative effort of a diverse crowd of experts) for him to find his best next treatment option, which they did. Brad then hosted two hackathons: one for Linnea Olson, a lung cancer patient, and another for Kasey Altman, a young woman with a rare cancer. In 2022 Brad launched Cancer Patient Lab with two advanced prostate cancer patients. Brad hopes to make hackathons and other resources available to many more patients who are facing complex testing and treatment decisions. Brad is a founding member of ennov1; an advisor to 4DPath, Alva10, Cancer Commons, Consuli, Rabble Health, and Travera; and is an active contributor to the Personalized Medicine Coalition. Key Moments: At 2:04 “Software is easy to change and people are hard to change.” At 20:10 “[The podcast] is named after a book called The Patient from Hell. It's written by a Stanford Prath who got diagnosed with a super rare type of cancer. And I was working at a medical diagnostic company when I got diagnosed. The chief medical officer gifted me the book and he said, you need to read this. And I happened to read it right before I started chemo. And that was the fundamental thesis of the book, was that we're sitting in a world of penicillin where most medical professionals are trained to think at the population level. It's all cohorts of patients. You show up, you fit an archetype, you fall into that bucket. That cohort of patients is treated by my standard care that has been tested on that cohort. If you have any amount of variance from that cohort's factors, you're basically lost because the medical professional doesn't actually know what to do with you because they are not trained to think empirically.” 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.

Welcome to another episode of, "Your Voice. Your Health," a special series dedicated to empowering patients and caregivers as they navigate the complexities of step therapy. Today we delve into the transformative world of personalized medicine and its potential to enhance your current treatment plans.  Join us as we sit down with Cynthia A. Bens, Senior Vice President of Public Policy at the Personalized Medicine Coalition. Cynthia shares her invaluable insights on how personalized medicine is revolutionizing healthcare and offers practical advice on leveraging it for the best possible outcomes. Plus, learn about the groundbreaking policy work Cynthia and PMC are championing to support the adoption of personalized medicine. Tune in and discover how personalized medicine can be the upgrade your healthcare journey needs!  

In this vital health podcast, we're speaking with Amy M. Miller, the recently appointed President of the PhRMA Foundation. Amy has held nonprofit leadership roles for nearly 20 years in DC, including President and CEO of the Society for Women's Health Research and Executive Vice President of the Personalized Medicine Coalition. The PhRMA Foundation catalyzes the careers of promising researchers through competitive peer-reviewed grants and fellowships in the drug delivery, drug discovery, translational medicine, health outcomes research, and value assessment fields. Since its founding in 1965, the Foundation has awarded over $110 million to over 2,700 researchers from diverse backgrounds at more than 300 institutions.See omnystudio.com/listener for privacy information.

Welcome to the next episode of the Personalized Medicine Podcast. On this show we typically talk about science and technology driving the progress in personalized medicine. But the policy side of things and patient access are equally important.We are happy to welcome on our podcast Christopher Wells, the Vice President of Public Affairs at the Personalized Medicine Coalition. Chris has recently published an article in STAT in which he eloquently described why we cannot narrow down personalized medicine just to cancer and need to look at it through a larger lens. And this is what we have discussed with Chris in this interview.Tune in to this episode to learn more about:Personalized Medicine beyond #genomics and #cancerWhat is the Personalized Medicine Coalition and what are its goals?Difficulties and success stories of bringing healthcare stakeholders togetherThe role of government in driving personalized medicine agendaRole of physician education in implementation of personalized medicine approachesGeneration of reliable clinical data to support personalized medicine implementationChallenge of equal patient access to personalized therapiesThe outlook on the future of personalized medicineGet in touch with Chris:LinkedIn: Christopher Wells, M.P.A. Twitter: @permedcoalition Web: https://www.personalizedmedicinecoalition.org/ Make sure to download the full show notes with our guest's bio, links to their most notable work, and our recommendations for further reads on the topic of the episode at pmedcast.com

The COVID-19 pandemic continues to drastically disrupt the healthcare industry. At the same time, it has shone a light on the most pressing issues within its ecosystem, setting in motion the beginning of a new era of crucial changes and innovation.   In this session, Dr Alagia and Dr Wohlgemuth discuss: The key role played by Quest in response to the COVID-19 pandemic How Quest is applying its COVID-19 learnings to accelerate change across the healthcare industry The unique ways in which the effectiveness of the healthcare system has and can be further improved through a consumer-centric care approach, a strategy enforced at Quest Innovation around implementation science and strategic population health solutions available to engage consumers across all healthcare entities About our guest Jay G. Wohlgemuth, MD, is senior vice president, R&D, medical and chief medical officer for Quest Diagnostics. Based at Quest Diagnostics Nichols Institute in San Juan Capistrano, California, Dr Wohlgemuth is responsible for Research & Development, Medical Affairs, and Medical/Lab Quality. In addition, he is responsible for improving outcomes for employees who use our health benefits. Dr Wohlgemuth has many years of experience in medical diagnostics and research and development. He rejoined Quest in 2016 from HealthTap, a health information start-up, where he served as senior vice president and chief healthcare officer. Prior to that, he was senior vice president, R&D, medical and chief scientific officer with Quest. Dr Wohlgemuth originally joined us in 2009 from Genentech, where he was director, clinical diagnostics, ITGR (immunology, tissue growth and repair) and global development team leader for ocrulizumab. He also served as vice president, R&D for VIA Pharmaceuticals and as chief medical officer for the molecular diagnostics company XDx, a company he co-founded. Dr Wohlgemuth also served as vice president, R&D for XDx. For his work at XDx, he was awarded Technology Pioneer 2005 at the World Economic Forum in Davos. He serves on the board of directors for the Personalized Medicine Coalition, Diagnostic Labs of Oklahoma, and The Anne and Henry Zarrow Charitable Foundation. Dr Wohlgemuth earned his bachelor's degree in biology from Harvard College and his medical degree from Stanford University School of Medicine, where he also served a fellowship in cardiovascular medicine. ------------------------------ Quest Diagnostics empowers people to take action to improve health outcomes. Derived from the world's largest database of clinical lab results, our diagnostic insights reveal new avenues to identify and treat disease, inspire healthy behaviors, and improve healthcare management. Quest Diagnostics annually serves 1 in 3 adult Americans and half the physicians and hospitals in the United States, and our 47,000 employees understand that, in the right hands and with the right context, our diagnostic insights can inspire actions that transform lives. More information is available at www.QuestDiagnostics.com

Jason Crites is the Founder/CEO of Assurance Health Data (AHD), a health technology company that has created the trusted third-party health data platform and marketplace. After his father's aggressive late-stage prostate cancer and his nephew's rare Leigh's Syndrome diagnosis, Jason became obsessed with solving the problems researchers face in obtaining and sharing data. After 18 years at IBM where he was one of the creators of the federated data model and the global storage solution – closing over $2 Billion in deals and optimizing the data infrastructure of many of the Fortune 500 – he founded AHD with the mission to make health data liquid. Jason has a passion for the ethical use of data and technology to advance Precision Medicine. He advocates for the healthcare industry to move from siloed sample sizes in the tens or hundreds to deep and diverse data sets in the billions and beyond by applying advanced artificial intelligence to dramatically accelerate the time from bench to clinic. To this end, Jason is active in large data-sharing programs and advises major healthcare, diagnostics, lab, patient advocacy, and life sciences organizations. Jason is also passionate about utilizing ethical data capture and use as a competitive advantage instead of as a cost of doing business in the "land grab" approach to data acquisition and analytics. As a patient advocate, citizen scientist, inventor, and community leader, Jason is a Founding Member of the Personalized Medicine Coalition data & health equities working groups Standardizing Laboratory Procedures in Pharmacogenomics (STRIPE), Illinois Technology Council, and The Digital Pathology Alliance. He is also on the Editorial Board at Blockchain in Healthcare Today, as well as on the Board of Directors for Illinois Chamber of Commerce. Jason graduated from the University of Illinois, Urbana-Champaign with a Bachelor of Science in Civil Engineering and an emphasis in Environmental and Hydrosystems Engineering. Jason R. Crites Founder and CEO Assurance Health Data

In 2018 Brad Power was a process innovation researcher and consultant with over 35 years experience and an author of over 75 articles for the Harvard Business Review when he was diagnosed with lymphoma. Brad went through a standard course of chemotherapy, which was successful, and he currently has no evidence of disease. While attending a conference on personalized medicine at Harvard Medical School, he spoke up to provide his experience as a patient, and was told in the breaks afterward by many attendees that he had a voice. He felt this must be his calling, and he decided to focus his skills and experience on accelerating innovation in cancer treatment. Because of his experience in working with large, successful companies, he was skeptical that incumbents would drive the big, disruptive process changes as fast as patients need. He decided to do what he could to help (1) patients that actively engage in solving their problems and make them available to others, and (2) startups that are disrupting the health system to help patients get educated, navigate, and form community. In late 2020 Brad was talking to his friend Bryce Olson, who said he had hit a wall in keeping his metastatic prostate cancer at bay. Brad suggested to Bryce that they could run a hackathon (a collaborative effort of a diverse crowd of experts) for him to find his best next treatment option, which they did from December 2020 to March 2021. Brad is currently hosting two hackathons: one for Linnea Olson, a lung cancer patient, and another for Kasey Altman, a young woman with a rare cancer. Brad hopes to make hackathons available to many more patients who are facing complex treatment decisions. Brad is a founding member of Ennov1; an advisor to Alva10, Blue Note Therapeutics, Cancer101.org, and Rabble Health; and is an active contributor to the Personalized Medicine Coalition.

This episode's Community Champion Sponsor is Catalyst. To virtually tour Catalyst and claim your space on campus, or host an upcoming event: https://www.catalysthealthtech.com/ (CLICK HERE) --- Using his personal experience as a previously diagnosed cancer patient, our next guest has made it his goal and mission to help other patients amplify their voices and become active participants in their treatment. Brad Power, the founder of CancerHacker Lab, joins us to discuss the power of his collaborative community of medical experts and patients that have rallied together to help others find their best next treatment option.  Additionally, Brad shares with us the positive outcomes the organization is experiencing and where Brad sees the work of his community heading into the future.   Join us to experience Brad's passion for helping other patients and how you and your community can be a part of CancerHacker Lab as we continue to work together to move the health of our nation forward. Let's go! Episode Highlights: How Brad found his calling by using his voice as a previous cancer patient Collaborating with his friend, Bryce, to create hackathons for cancer patients How his lab gives support to patients to be more active and engaged in their treatment process Where Brad sees his community heading towards in the future  How the healthcare community contribute to CancerHacker Lab's goals  About our Guest:  In 2018 Brad Power was a process innovation researcher and consultant with over 35 years experience and an author of over 75 articles for the Harvard Business Review when he was diagnosed with lymphoma. Brad went through a standard course of chemotherapy, which was successful, and he currently has no evidence of disease. While attending a conference on personalized medicine at Harvard Medical School, he spoke up to provide his experience as a patient and was told in the breaks afterward by many attendees that he had a voice. He felt this must be his calling, and he decided to focus his skills and experience on accelerating innovation in cancer treatment. Because of his experience in working with large, successful companies, he was skeptical that incumbents would drive the big, disruptive process changes as fast as patients need. He decided to do what he could to help (1) patients that actively engage in solving their problems and make them available to others, and (2) startups that are disrupting the health system to help patients get educated, navigate, and form community. In late 2020 Brad was talking to his friend Bryce Olson, who said he had hit a wall in keeping his metastatic prostate cancer at bay. Brad suggested to Bryce that they could run a hackathon (a collaborative effort of a diverse crowd of experts) for him to find his best next treatment option, which they did from December 2020 to March 2021. Brad is currently hosting two hackathons: one for Linnea Olson, a lung cancer patient, and another for Kasey Altman, a young woman with a rare cancer. Brad hopes to make hackathons available to many more patients who are facing complex treatment decisions. Brad is a founding member of Ennov1; an advisor to Blue Note Therapeutics, Rabble Health, and Cancer101.org; and is an active contributor to the Personalized Medicine Coalition. Links Supporting This Episode: CancerHacker Lab website: https://cancerhackerlab.com/ (CLICK HERE) Brad Power LinkedIn page: https://www.linkedin.com/in/brad-power-75a101/ (CLICK HERE) Brad Power Twitter page: https://twitter.com/bradfordpower (CLICK HERE) Clubhouse handle: @mikebiselli Mike Biselli LinkedIn page: https://www.linkedin.com/in/mikebiselli (CLICK HERE) Mike Biselli Twitter page: https://twitter.com/mikebiselli (CLICK HERE) Visit our website: https://www.passionatepioneers.com/ (CLICK HERE) Subscribe to newsletter: https://forms.gle/PLdcj7ujAGEtunsj6 (CLICK HERE) Guest nomination form:... Support this podcast

Scott Megill, President & CEO at Coriell Life Sciences joins the premiere episode of season 3 of RadioRev to talk about pharmacogenomics and how it relates to mental health care. In this episode, Scott discusses some of the silver linings that emerged over the last year in healthcare, answering questions like: What's unique about Coriell's approach? What's the role of personalization in the work that you do? How does pharmacogenomics improve mental health treatment? To connect with Scott: https://www.linkedin.com/in/scottmegill/ To learn more about Coriell Life Sciences: https://www.coriell.com/ Scott Megill is President and Chief Executive Officer of Coriell Life Sciences (CLS). With a vision to translate decades of cutting-edge genetic research into insights that empower the most precise medical care, Scott launched Coriell Life Sciences out of the renowned Coriell Institute for Medical Research in 2013. Under his leadership, CLS earned recognition as IBM's Global Entrepreneur of the Year and has grown to become an internationally trusted provider of comprehensive medication risk management solutions, bioinformatics, and genetic interpretation and reporting services. Pioneering innovation in precision medicine, Scott is a driving force in setting the industry standard for pharmacogenomics and advancing a healthier world. An entrepreneurial leader recognized for unlocking the power of technology to fuel smarter healthcare, Scott spearheads collaboration with major healthcare providers, payers, employers, physicians, and other providers to help improve lives and reduce healthcare costs. He is passionate about educating others and is an advocate for the advancement of precision medicine through his involvement with organizations, including the Employer and Provider Health Innovation Roundtables, Personalized Medicine Coalition, Business Group on Health, Health Action Council, among others. Scott previously served as CIO at the Coriell Institute for Medical Research and held business technology leadership roles at Dow Chemical Company and Rohm and Haas. He also founded the Moorestown Robotics Club, an organization that immerses New Jersey elementary, middle, and high school students in the excitement of science and technology through international robotics competitions. Scott holds an Executive Master of Business Administration degree from Villanova University and a Bachelor of Arts degree in English and Philosophy from Drew University.

In this episode, Foley Partners Judy Waltz and Antoinette Konski talk with Edward Abrahams, the President of the Personalized Medicine Coalition, to discuss the issues facing personalized medicine and how the concepts underpinning the field may be applied to diagnose and treat COVID-19.

In episode 15, our host Oleksandr Yagensky sat down with Dr. Liz O’Day, the founder and CEO of Olaris, a biotech company that enables patients to pursue most effective personalized treatments. Liz unravels how small molecule metabolites along with machine learning can be utilized to evaluate patient-specific responses to therapeutics. Together with Olaris, Liz is shaping the future of personalized medicine. Just two weeks ago, she was elected to the Board of Directors at Personalized Medicine Coalition in recognition of her contribution to the field.Together with Liz, we discussed: ◦ The startup story of Olaris ◦ Biomarkers of Response (BORs) ◦ The future of biomarker panels and multi-omics ◦ Metabolite based biomarker profiling ◦ Analytical platforms used at Olaris ◦ How Olaris leverages machine-learning to find patient-specific metabolite patterns ◦ Application cases for Olaris technology in cancer treatment ◦ Three part aim of Olaris ◦ Bringing the stakeholders in healthcare together ◦ Role of science in becoming a successful entrepreneur ◦ Common challenges faced by biotech start-ups ◦ The future of personalized medicineGet in touch with Liz: ◦ LinkedIn: @Liz O'Day ◦ Twitter: @Lizzard0126 ◦ Facebook: https://www.facebook.com/olarisBoR/ ◦ Instagram: https://www.instagram.com/lizzard0126/ ◦ Web: https://www.olarisbor.com/Make sure to download the full show notes with our guest's bio, links to their most notable work, and our recommendations for further reads on the topic of the episode at pmedcast.com

Ed Abrahams has a message for Nancy Pelosi about HR 3. That’s the new bill in the House to reduce drug pricing. Ed is the President of the Personalized Medicine Coalition, an advocacy organization in Washington representing our industry which will soon announce a new caucus in congress devoted to personalized medicine. Ed joins us today and says to Pelosi, there’s a better way, a more American way to reduce drug costs.

In this episode, we welcome guest, Chris Wells, VP of Public Affairs for the Personalized Medicine Coalition, a collaboration of innovators, scientists, patients, providers, and payers who work to further the understanding and adoption of personalized medicine across the healthcare system.

This week, hosts Mark Masselli and Margaret Flinter speak with Edward Abrahams, President of the Personalized Medicine Coalition which supports the emerging science of precision medicine and the huge potential it holds for cost savings with pharmacogenomics, targeted therapies, and improved outcomes for patients and health systems. They discuss the Coalition’s upcoming summit at Harvard which will bring together policy makers, leading scientists, advocates and provider organizations to devise strategies for advancing precision medicine. The post Targeted Therapies and Big Cost Savings: Personalized Medicine Coalition President Edward Abrahams on Precision Medicine’s Potential appeared first on Healthy Communities Online.

Dr. Amy M. Miller is the President and CEO of the Society for Women’s Health Research, the nation’s nonprofit thought leader focused on eliminating imbalances in health care for women. Dr. Miller previously served as Executive Vice President at the Personalized Medicine Coalition, where she worked with innovators, scientists, providers, and payers on scientific policy and business challenges impacting personalized medicine. The Society for Women’s Health Research (SWHR) is a national nonprofit dedicated to promoting research on biological differences in disease and improving women’s health through science, policy, and education.

The Personalized Medicine Coalition advocates for a wide group of constituents, including scientists, health care providers, entrepreneurs, payers, and patients. Which is why we’ve often wondered how the organization can be absolutely clear in their priorities. Today, PMC President Edward Abrahams joins us to answer that question.

The Personalized Medicine Coalition's recently issued its 2017 report on the opportunities and challenges for the industry. Chris Wells, communications director for the organization, will be kicking off The 4th Annual Business of Personalized Medicine Summit in South San Francisco March 28, drawing from the new report to discuss trends and the pace of advances. We spoke to Wells about the state of personalized medicine, the obstacles to greater clinical adoption, and what the growing legislative battles in Washington will mean for the industry.

President Obama unveiled the details of his $215 million precision medicine initiative, the centerpiece of which is a 1 million person study that seeks to correlate genetic data, with health records, lifestyle information, and more to better understanding wellness and disease and fuel the development of new therapies. We spoke to Amy Miller, executive vice president of The Personalized Medicine Coalition, about the initiative, if the funding for it will match its ambition, and whether concerns about privacy will stand as a barrier to its success.