Patients Have Power!

Prueba ahora Firma sin compromiso. Cancele cuando quiera.

Sinopsis

Lilly Stairs and Aaron Jun, Heads of Patient Advocacy and Marketing respectively at Clara Health, are joined by patient advocates, healthcare professionals, and more in wide-ranging discussions about healthcare health journeys in the 21st century.

Episodios

  • Lucky Number 13: Peter Morleys Endless Advocacy

    Lucky Number 13: Peter Morley's Endless Advocacy

    27/02/2019 Duración: 01h07min

    Peter lives with multiple chronic conditions but has spent the past two years tirelessly advocating for patients everywhere by taking the morning train from his home in New York City to Washington D.C. Aaron talks to Peter about what advocacy has accomplished, where advocacy will go next, and the things we can look forward to in 2019. 

  • Researching Treatment for an Ultra-Rare Disease

    Researching Treatment for an Ultra-Rare Disease

    20/02/2019 Duración: 17min

    Aaron interviews Dr. Alex Solyom, senior medical director at Enzyvant, about his team's work in developing a new therapy for an ultra-rare genetic condition known as Farber disease.

  • Advocating for Rare Disease in Mississippi

    Advocating for Rare Disease in Mississippi

    24/12/2018 Duración: 49min

    A newborn screening is a routine procedure. Shannah didn't give it much thought as she brought her daughter, Emmalyn, home from the hospital. But a late-night call set her down a road towards advocacy that she couldn't have predicted.

  • Representation Matters: Increasing Inclusivity in Research

    Representation Matters: Increasing Inclusivity in Research

    05/12/2018 Duración: 31min

    Lilly chats with the ladies of the MS Minority Research Engagement Partnership Network (which is a bit of a mouthful!) Holly, Anita, and Shawn about their work in increasing inclusivity and access in scientific research. 

  • Beyond Sweat: How Hyperhidrosis Shapes Everyday Life

    Beyond Sweat: How Hyperhidrosis Shapes Everyday Life

    28/11/2018 Duración: 24min

    Maria Thomas joins Lilly in honor of Hyperhidrosis Awareness Month to talk about her “life as a puddle” and inspiring advocacy work.

  • Midterms 2018: Healthcare is on the ballot

    Midterms 2018: Healthcare is on the ballot

    31/10/2018 Duración: 56min

    To discuss the healthcare issues that are at stake in the upcoming midterm elections, we speak to lawyer, healthcare advocate, and professional patient, Matt Cortland. As a person living with chronic illnesses, Matt knows all too well the necessity of equitable and robust access to care in everyone's lives; as a lawyer with a Master's in Public Health, he knows the issues and the policies inside and out. Here's our conversation about American healthcare and the things that are at stake in November.

  • Christopher Snider from Tidepool.org

    Christopher Snider from Tidepool.org

    10/10/2018 Duración: 28min

    Welcome to Season Two of the Patients Have Power Podcast! After a summer of planning and plotting, we're back and expanding the conversation beyond patient stories to include stories from healthcare and healthtech. To kick off the new season, Lilly sits with Chris Snider, a diabetes advocate, blogger, podcaster, and the community manager at Tidepool.org, an open-source and not-for-profit company working to make diabetes data more accessible. Chris chats about his work, maturation as an advocate, and fighting for access to better and more inclusive care.  

  • Twenty-two - How can I make a difference today?

    Twenty-two - "How can I make a difference today?"

    01/08/2018 Duración: 01h14min

    Peter Morley (@morethanmySLE on Twitter) is using his story to help fight for healthcare. Although he was once a very private person who never even told his friends he had cancer, Peter found his voice after the 2016 Presidential election, when he felt called to fight to protect the gains of the Affordable Care Act. In this wide-ranging conversion, we discuss the power of a story, taking 3:25AM trains from NYC to DC, and how his first-ever trip to DC resulted in making a John McCain staffer cry. 

  • Twenty-one: If you had three wishes, what would they be?

    Twenty-one: "If you had three wishes, what would they be?"

    25/07/2018 Duración: 25min

    Ashley Boynes-Shuck is a writer, patient advocate, and a powerhouse voice for those who live with chronic conditions. Among other things, she's a published author who just finished her fourth book, an animal lover and advocate, a lover of fashion who won a fashion award from the Pittsburgh Fashion Hall of Fame, an avid birdwatcher...and somehow she found time to chat with Lilly about her journey, her ongoing projects, and her life as one-half of a power couple.

  • Twenty - My heart is tipped over.

    Twenty - "My heart is tipped over."

    18/07/2018 Duración: 31min

    "My heart is in the wrong place in my chest."  Molly Sarah chats with Lilly about her long road to diagnosis, her stint as a roller derby athlete, and why her rheumatologist shouted, "Oh my god, I got one!" when he first met her. 

  • Episode 19 - I just could not get a smile off my face!

    Episode 19 - "I just could not get a smile off my face!"

    11/07/2018 Duración: 25min

    Savannah was told she had depression...when, in fact, she was living with arthritis. Now, she uses her condition as an opportunity to give back to research through participation in clinical trials, patient advocacy, and sharing her story.  

  • Episode Eighteen - From a patient perspective, not much has changed.

    Episode Eighteen - "From a patient perspective, not much has changed."

    26/06/2018 Duración: 28min

    Dan Sfera - aka The Clinical Trials Guru - has been working in clinical trials since 2005. Over the years, he's seen how patient recruitment has changed...but, mostly, how it has remained the same.  Dan and Aaron talk about the need of new technology, processes, and philosophies in patient recruitment, and how 21st century tactics can make clinical trials participation more patient-friendly. 

  • Episode Seventeen - Patients are the end client at the end of the day.

    Episode Seventeen - "Patients are the end client at the end of the day."

    19/06/2018 Duración: 23min

    Leilani is an advocate in the transplant and chronic illness community. She stopped by the Clara offices to talk about her experience receiving a heart transplant, what drives her to her advocacy, and how patients need to be treat like the user of any healthcare system. 

  • Episode Sixteen - Breaking down the fight over pre-existing conditions, and the new Right To Try

    Episode Sixteen - Breaking down the fight over pre-existing conditions, and the new Right To Try

    12/06/2018 Duración: 27min

    Lilly and Aaron break down a renewed effort to undermine the Affordable Care Act by stripping out the legislation's protections for those living with pre-existing conditions (a list which includes...acne and...(checks notes) pregnancy?). They also chat about the new Right to Try legislation that has recently passed and the various thoughts the patient and pharmaceutical communities had about it.  Mentioned on the pod:  Follow @mattbc, aka Medicare Matt, Esq, who is a lawyer living with a chronic illness who fights for patient rights - his analysis of legislation and the latest legal battles are incredibly helpful.  If you want to get more involve and make your voice heard, a great tool is 5calls.org. It'll find your representatives, their phone numbers, and even provide scripts for you to use when you get through to them.    Patients have power; make sure you to exercise yours everyday. 

  • Episode Fifteen - A fiery ball of rage.

    Episode Fifteen - "A fiery ball of rage."

    05/06/2018 Duración: 33min

    Lilly sits down with Anna Evangeline - aka Six Hips (sixhipsandcounting.com) - for a frank and open chat about advocacy and her own health journey. Anna details her multiple surgeries, the long hospital stays and fighting for the care that she needs, the anger that she still feels about the things that have happened, and how honesty and raw storytelling helps spread stories more effectively. 

  • Fourteen - The Luckiest of the Unlucky

    Fourteen - "The Luckiest of the Unlucky"

    25/05/2018 Duración: 27min

    In this episode, I had the absolute pleasure of sitting down with Michele Rhee, Enzyvant’s Head of Patient Affairs. A simple job title doesn’t quite do her story justice: Michele’s road to patient advocacy involves a cancer diagnosis, a collapsed lung, a heart tumor, tears shared with her mother, and a fight to get the treatments that she knew she needed. And now, she uses all the experience she gained through her life as a patient and an advocate at Enzyvant. Michele and the Enzyvant team work to find a treatment for Farber disease, a rare disease that has about 80 reported cases world-wide [1], through patient engagement and education. We chat about how much she loves her work, how lucky she feels, and the power of a story to change the world. Michele is one of my role models in patient advocacy and I think you’ll see why as you listen to our chat! Zielonka, M et al. Genetics in Med. 2017; a cross-sectional quantitative analysis of the natural history of Farber disease

  • One - She has Crohns disease, and shes pretty rad!

    One - "She has Crohn's disease, and she's pretty rad!"

    18/05/2018 Duración: 26min

    When we were planning out the Patients Have Power! podcast, there was one name kept popping up as the perfect first guest to have visit Clara Studios. So you can imagine that we were absolutely thrilled that Amanda found time in her busy schedule to visit us for a glass of wine and some honest, raw, hilarious, inspiring talk. 

  • Two - Kelby and the Worst Roommate Ever

    Two - Kelby and the Worst Roommate Ever

    18/05/2018 Duración: 22min

    Kelby joins Lilly to chat about her diagnosis and health journeys, and how living with a chronic condition is just like having a horrible roommate. 

  • Three - I havent looked at my steps yet...but Ive taken quite a few!

    Three - "I haven't looked at my steps yet...but I've taken quite a few!"

    18/05/2018 Duración: 20min

    Lilly heads to Vegas to attend the first-ever Crohn's and Colitis Congress. Along the way, she interviewed the ever-inspirational Brooke Abbott (crazycreolemommy.com) about advocacy, mothering, and a busy life with a chronic condition.  

  • Four - Ya cant teach compassion.

    Four - "Ya can't teach compassion."

    18/05/2018 Duración: 24min

    @WheezyNurse - aka Amber - sits with Lilly to discuss the importance of patient-centricity and compassion in the world of healthcare, and especially in nursing. 

página 1 de 2

Informações: