Our aim at Patient Voice Initiative is to ensure patient voices are seen, heard and valued in the Australian health system. But what is the patient voice and why is it important?Join us as we explore real experiences of health and healthcare through the people who most depend on it and how these stories can help us build better care for all.The podcast is hosted by the Patient Voice Initiative Chair and patient advocate, Jessica Bean, which means it is an opportunity to hear patients in disc ...
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Patient advocacy is a critical area in healthcare that is transforming the lives of patients across the country by helping them overcome barriers to access and care. Join Sanofi US Head of Public Affairs and Patient Advocacy, Eric Racine, and his co-hosts to meet some of the unsung heroes leading patient advocacy organizations. In each episode, we will discuss the challenges each group has faced and share actionable insights to address gaps and help make the U.S. healthcare system work bette ...
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Where Patients and Caregivers can find information and free resources to help them navigate their healthcare journey. We will have patients and caregivers as guests to discuss their own patient experiences, what they have learned along the way, and how they cope daily with being a patient or caregiver. You too can be a guest or find out more information on patient advocacy at www.patientvoicesmatter.com. We can't wait to hear your Patient Voice!
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The mission of The Voice of the Patient is simple: To change lives, that is, to improve the care and quality of the lives we touch by improving healthcare through not only hearing, but truly listening to the voice of the patient.
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How Might We? How Fresh Perspectives Can Change Outcomes in Overlooked Conditions
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When it comes to meeting healthcare’s biggest challenges, sometimes the best approach begins with curiosity. Dr. Jean Wright, MD, MPH, Chief Executive Officer of the Chronic Obstructive Pulmonary Disease (COPD) Foundation, has made an immense impact on the COPD community and knows firsthand how to bring new solutions that move the needle for poorly…
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Transforming the Pace of Medicine Development Through Partnerships with the Patient Advocacy Community
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From leveraging existing resources to filling gaps with innovative tools, partnerships throughout the healthcare industry can help meet the needs of more patients and drive impact in an accelerated way. In this episode, Eric Racine is joined by Vicky DiBiaso, Global Head of Patient Informed Development and Health Value Translation at Sanofi, and Sa…
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Taking a Business Approach to Advocacy and Philanthropy - How a Venture Philanthropist Invests to Impact Peoples’ Lives
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David Panzirer, a trustee of the Helmsley Charitable Trust, discovered his calling when his daughter was diagnosed with type 1 diabetes (T1D). A businessperson at his core, David views healthcare grants as investments, and his team continuously develops a deep understanding of the ecosystem as a key success factor to maximize their impact. Learn fr…
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Louise is the mother of Isabelle, a 3-year old who lives with a rare condition called Severe Combined Immune Deficiency ("SCID" or the "Bubble Baby condition"). SCID babies are born without a functioning immune system and cannot fight off even the simplest viruses or infections. After Isabelle survived her life-saving Stem Cell Transplant at 7 mont…
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Long-Term Impact: Aggregating Data to Accelerate Innovations for Patients
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To help make an impact for patients, it's important to have a comprehensive understanding of how a disease impacts their day-to-day lives. Michael Osso, Chief Executive Officer of the Crohn's & Colitis Foundation knows this well. He and his team created a comprehensive research ecosystem that harnesses data– from reported anecdotes to clinical data…
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Claire Devine is a best selling artist and emerging ecommerce/personal branding authority. Her works are collected worldwide and she imbues business and art with heartfelt candour, compassion and kindness. The Granddaughter of celebrated French artists and potters, Claire was born in Toulouse, France and grew up in an art gallery space in Brisbane,…
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Geoff is a dad, husband, blogger, public speaker and an active patient advocate. Since being diagnosed in 2014 with the terminal blood cancer multiple myeloma, Geoff uses this adversity as a means to lead by example in helping others to become empowered with the challenges that they may face. His advocacy includes working as a volunteer for Peter M…
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Ashley is a diabetes advocate, researcher and healthcare professional. Through her lived experience, she's developed a passion for driving patient-centred healthcare service design and ensuring the lived experience voice is involved from conception to research and health service delivery. Ashley has been part of global diabetes advocacy efforts to …
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An Advocate's Journey to Put Patients at the Forefront of Research
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Patient advocacy groups have become a powerful force engaging with clinical researchers. The National Bleeding Disorders Foundation (NBDF) has been one of the best at driving a research agenda that matters to patients, yet they still saw areas for improvement. Maria Santaella, Vice President of Research Strategy at NBDF, realized the importance of …
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Kate Gough is a passionate advocate and parent, dedicated to raising awareness and heralding improvement for those who are born with Spinal Muscular Atrophy (SMA) and their families. As the mother of baby Oakley, who was diagnosed with SMA at eight weeks old, Kate brings a personal perspective to her advocacy work, striving to improve the lives of …
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Clare Stuart is the Policy and Advocacy Manager for the Mito Foundation, advocating for improvements to healthcare, disability and social support for people living with mito. She holds a Masters in Public Health and has contributed to policy development at NSW Ministry of Health and managed an Australian rare disease organisation. Clare played a ke…
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Building a Leader: How to Grow with Your Patient Advocacy Group
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What does it take to grow a patient advocacy group from the ground up to become a driving force for patients in the US? Learn how Julie Block, President and CEO of the National Eczema Association (NEA), defined a bold long-term vision and learned to trust her team to stay true to the plan. Defining a five-year strategic blueprint, NEA took a broad …
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The First Cancer Center on Native Land – From Promise to Reality
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What does it take to improve access to specialty care for vulnerable and underserved populations? What if the starting point is a complete lack of specialty care services? When Kim Thiboldeaux, CEO of the Northeast Business Group on Health, was told there was no cancer or specialty care on Native American reservations, her first reaction was shock,…
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Many Voices, One Goal: The Power of Alliances
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Cancer can be an isolating condition, so Meredith Cowden has made it her mission to ensure other patients are not alone. Meredith, a cancer survivor living with chronic graft versus host disease (cGVHD), responded to adversity by forming the Meredith A. Cowden Foundation with her family to support and advocate for fellow transplant patients. The ke…
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Capturing Data to Evaluate and Communicate Impact
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Impact is a word we often use in patient advocacy. We know it’s important to the patients and communities being served, and that it also matters to the funders of advocacy programs. But how do you capture impact, when do you start, where does the information come from, and how should it be communicated? Sanofi host Eric Racine and co-host Elizabeth…
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How to Create Partnerships That Build Trust and Deliver Outcomes
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Building trust and improving health in underserved communities can be a daunting challenge. Most would agree that “it takes a village,” but how do you create that village, and who are the right partners? In this premier episode of “Patient Advocacy Voices,” Sanofi host Eric Racine and his co-host Courtney Peters discuss this challenge with Dr. Laur…
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Por Sanofi US Patient Advocacy
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Host, Becky Barnes discusses her roots, her education, and how she became the Patient Advocate that she is today. --- Support this podcast: https://podcasters.spotify.com/pod/show/patientvoicesmatter/support
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Podcast Host, Becky Barnes has been a Patient Advocate and Patient for over 13 years. Becky discusses what Patient Voices Matter is all about and what to expect. Upcoming episodes are full of information and free resources so that you can be your own Patient Advocate. If you are a Patient or Caregiver this podcast is for you! If you have ever wonde…
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Podcast Host, Becky Barnes has been a Patient Advocate and Patient for over 13 years. Becky discusses what Patient Voices Matter is all about and what to expect with the upcoming episodes that are full of information and free resources. Use these tools so that you can become your own Patient Advocate! www.patientvoicesmatter.com…
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How living with bowel cancer drove Nicole's advocacy
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Nicole is a patient advocate and health consultant. When she was diagnosed with advanced bowel cancer in March 2017, she was told she would likely die within two years. Nicole then sought a second opinion, and found another medical team who were prepared to think in an innovative and personalised way about her health. Four years later, Nicole has h…
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Tanya Hall - The reality of living with heart disease
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Tanya is the CEO and founder of Hearts4Heart, which she founded in 2011 through her own experience of living with heart disease. Hearts4Heart is a national organisation supporting educating and advocating for patients living with heart disease. Through Tanya’s commitment and advocacy, Hearts4Heart has grown exponentially and is now seen as an exper…
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Agnes Nsofwa and her advocacy for sickle cell patients
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After Agnes' daughter was diagnosed with sickle cell disease at 14 months old, she learned everything she could and soon discovered the limited treatment options that patients had access to. Since then, she's become an advocate for sickle cell patients. With each person that's diagnosed having such a different experience with the disease, Agnes kne…
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Loss, lessons, and a lifelong legacy - Rachael Casella's story
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With Rare Disease Day coming up on the 28th of February, The Patient Voice Podcast is proud to share Rachael Casella’s story. Rachael is a campaigner and activist for genetic carrier screening, IVF education, and reproductive health. After losing her daughter Mackenzie at just 7 months old to spinal muscular atrophy type 1 (SMA), Rachael realised t…
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Lisa Briggs a voice of change for lung cancer
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Lisa was diagnosed with lung cancer soon after the birth of her second child in 2014. At the time, she joined a clinical trial to treat her lung cancer. After being aware of the limited options and access to treatments for lung cancer patients in Australia, Lisa began to work with the major players in the field, and advocate for access to medicines…
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Alex Parker shares her Cystic Fibrosis story
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Alex Parker was born in country Victoria and diagnosed with Cystic Fibrosis at 6 weeks of age. She had a very normal childhood despite all the rigorous health routines to maintain her health. But in her early 20s, her health started to deteriorate and she was in and out of hospital with lung infections. The future looked bleak until she was able to…
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Ep. 22 - Joletta Belton: Psychological: Let's Talk About the P in BioPsychoSocial
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This episode is a reading of a blog post from Joletta Belton. Read more amazing posts at Jo's blog: www.mycuppajo.com You can find Joletta Belton on Twitter @mycuppajo The post (Psychological: Let's Talk About the P in BioPsychoSocial) is very refreshing for me to read, because I often see other health care providers fear the "psychological" aspect…
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Ep. 21 - Mandy Chamberlain: Occupational and Physical Therapy, United in Serving Humanity
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At the Voice of the Patient, we are dedicated to enhancing our ability as health care providers to truly listen to others and to establish a therapeutic alliance. In some cases, we can benefit from listening to the experience and mindset of other providers, such as Mandy Chamberlain. Mandy Chamberlain is an occupational therapist and the founder of…
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Ep. 20 - Dr. Faye Reiff-Pasarew: The Art of Medicine and The Arc to Gender Equity
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At the Voice of the Patient, we are dedicated to enhancing our ability as health care providers to truly listen to others and to establish a therapeutic alliance. In some cases, we can benefit from listening to the experience and mindset of other providers, such as Dr. Faye Reiff-Pasarew. Dr. Reiff-Pasarew is an assistant professor of hospital medi…
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Ep. 19 - Kat Wilson: The Side Effects of Chronic Pain Nobody Talks About
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This episode is a reading of an amazing blog post by Kat Wilson, called "The Side Effects of Chronic Pain Nobody Talks About." You can find this post and other awesome posts from Kat at her blog: Chronically Composed, A Scottish Journey With Chronic Pain. Please connect with Kat Wilson through the following media: Twitter: @katwilson04 Instagram: @…
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Ep. 18 - Dr. Kenneth Miller: Dementia, Delirium, and Depression
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At the Voice of the Patient, we are dedicated to enhancing our ability as health care providers to truly listen to others and to establish a therapeutic alliance. In some cases, we can benefit from listening to the experience and mindset of other providers, such as Dr. Kenneth Miller. Dr. Miller is a physical therapist and educator with more than 2…
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Ep. 17 - Sean Hagey, Part 4: Mental Health Matters Series
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This is the fourth episode of our Mental Health Matters series with Sean Hagey. In this episode, Sean talks about the public perception of mental illness, within health care professions and outside of health care. If you haven't listened to the first three episodes, then check them out. In the first episode, Sean begins his story, sharing powerful …
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Ep. 16 - Sean Hagey, Part 3: Mental Health Matters Series
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This is the third episode of our Mental Health Matters series with Sean Hagey. If you haven't listened to the first two episodes, then check them out. In the first episode, Sean begins his story, sharing powerful experiences throughout his life. In the second episode, Sean talks about treatment, coping mechanisms, and progress despite challenging t…
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Ep. 15 - Sean Hagey, Part 2: Mental Health Matters Series
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This is the second episode of our Mental Health Matters series with Sean Hagey. If you haven't listened to the first episode, then check it out. Sean approached the Voice of the Patient with the idea for this series and has asked that we help to eradicate mental health stigma. We believe that the stigma cannot be erased without gaining a level of c…
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Ep. 14 - Sean Hagey, Part 1: Mental Health Matters Series
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This is the first episode of a mini-series on mental health with Sean Hagey. Sean approached the Voice of the Patient with the idea for this series and has asked that we help to eradicate mental health stigma. We believe that the stigma cannot be erased without gaining a level of comfort with our own personal discomfort. Sean wants to tell his stor…
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Ep. 13 - Dr. Mark Bishop: The Specifics of Nonspecific Effects in Therapy
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At the Voice of the Patient, we are dedicated to enhancing our ability as health care providers to truly listen to others and to establish a therapeutic alliance. In some cases, we can benefit from listening to the experience and mindset of other providers, such as Dr. Mark Bishop, PT, PhD. Dr. Bishop is an Associate Professor in the Department of …
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Ep. 12 - Jared Updike: A Chronic Pain Success Story
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Jared Updike shares his story about his experience with pain in this episode. He received diagnoses of psychogenic pain, central sensitization, myofascial pain syndrome, and fibromyalgia. Jared wrote a terrific blog post ("Doctor Masseuse"), which I discovered via Paul Ingraham's post on PainScience.com. Jared Updike is Los Angeles-based software d…
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Ep. 11 - Alan Fredendall: Army Rehab After an IED Explosion
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This episode of the Voice of the Patient comes to you from the Combined Sections Meeting of the American Physical Therapy Association. Alan and I found a corner of the Hilton Hotel in San Antonio, Texas, to record this interview. San Antonio was bustling with 14,000 attendees of CSM, so please forgive the background noise. In this episode, Alan sha…
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Ep. 10 - Dr. Andrew Rothschild: From Lumbar Fusion Patient to Physical Therapist
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At the Voice of the Patient, we are dedicated to enhancing our ability as health care providers to truly listen to others and to establish a therapeutic alliance. In some cases, we can benefit from listening to the experience and mindset of other providers, such as Dr. Andrew Rothschild. Dr. Rothschild also shares his story as a patient, before and…
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Ep. 9 - Dr. Emil Berengut: Oncology Physical Therapy and the Biopsychosocial Model
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At the Voice of the Patient, we are dedicated to enhancing our ability as health care providers to truly listen to others and to establish a therapeutic alliance. In some cases, we can benefit from listening to the experience and mindset of other providers, such as Dr. Emil Berengut. Dr. Berengut is the Outpatient Therapy Supervisor at a tertiary c…
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Ep. 8 - Gabriela Nunez: Two ACL Reconstructions and Psychologically-Informed PT
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In this episode, Gabriela Nunez discusses her experience with two ACL reconstructions and the rehabilitation process following those surgeries. Gabriela Nunez is a 3rd year DPT student at the University of Florida, who enjoys working with all ages and conditions ranging from athletic injuries to chronic pain. Gabriela is interested in the impact of…
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Ep. 7 - Zach R Stearns: The Path From Clinical Psychology to Physical Therapy
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VOTPt is joined in the 7th episode by Zach Stearns, a DPT student at the University of Florida. Zach will be joining the team at Voice of the Patient as a podcast contributor. He has quite a bit of experience with the field of psychology prior to entering PT school. Zachary Stearns also works with SarahMaker.com…
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In episode 6.2, Christy Natale and I return for some Q&A. We explore her relationship to her back pain & some of the psychological components of her pain as well as those that helped her move beyond the pain. Listen to how the voice of the clinician and voice of the patient weave into one with her descriptions. Please enjoy.…
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In episode 6.1, Christy Natale, a PT and patient, explains her struggles with back pain. the truly fascinating aspect of this interview for me was to see the interplay between the clinician and patient in the same person. You'll want to listen again next week when she and I explore that interplay and go in greater depth behind the voice of the pati…
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In the fifth episode of The Voice of the Patient podcast, Jerry Durham joins the show as a guest. He's doing a ton of work around relationship-centered care that's challenging the status quo of healthcare. He's also written a blog for this website answering the questions: What is "Customer Service" and How do we improve it? Great conversation, grea…
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In the fourth installment of The Voice of the Patient podcast, I welcomed the first the first person whose ever done a TED Talk to the show, Dave de Bronkart (@ePatientDave). He gave some specific advice to patients and providers alike to become more engaged in patient care. He was a lot of fun to talk with and some excellent tips. Check out Dave's…
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In the third episode of The Voice of the Patient podcast, I welcomed the first of my own patients to the show as a guest, Dick, who is recovering from spinal fusion. He talked about his experienced before, during, and after spine surgery including some of the challenges he's faced. I'm really excited to share him with you. He was a lot of fun to wo…
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Guest: Karen Nicole Smith - @KNSWriter
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In the second episode of The Voice of the Patient podcast, we welcome our first patient guest, Karen Nicole Smith. She talks with us about her experience with medical and health professionals during her treatments for kidney disease and dialysis, cancer, and cardiac arrest. She's an amazing person and this interview has ALREADY changed how I approa…
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The mission of The Voice of the Patient is simple: To change lives, that is, to improve the care and quality of the lives we touch by improving healthcare through not only hearing, but truly listening to the voice of the patient.
…
continue reading