Senior Anchor Annmarie Seldon sits down with Jason Euzukonis, a patient advocate who has a rare disease and who is co-leader of the Young Waldenstrom’s Macrogobulinemia Support Group. They discuss how important support groups are and provide guidance on what to do when you are first diagnosed with a rare disease or cancer.

Our Senior Anchor, Dr. Jasmine Kaur, at the National Library of Patient Rights and Advocacy, engages in an inspiring conversation with Rachel Lebovic. Rachel, a PhD student at the University of Toronto, Lived Experience Public Mental Health Researcher, and Advocate with an MHS in Mental Health from Johns Hopkins University, shares how receiving the correct diagnosis transformed her life, shifted her mindset, and empowered her journey in patient advocacy. She also reflects on her mental health struggles, the importance of self-advocacy, and embracing her story.

Senior Anchor Annmarie Seldon interviews patient advocate and media personality Michele Nadeem-Baker. Michele Nadeem-Baker has worked nationally as a broadcast journalist and globally as the chief of communications for well-known, publicly traded multi-billion-dollar corporations. Her chronic lymphocytic leukemia (CLL) diagnosis changed her life but did not stop her. She was drawn to Patient Power for its credible, unmatched information. Joining the team in 2015 as Patient Power’s PR advisor, she brings an extensive background in communication strategies that encompass, among other ventures, various national and international health-related concerns where she has successfully taken a leading role. Michele has extensively represented the American Cancer Society and worked with organizations on medical conditions including various cancers and cardiovascular health—and now draws on her experience to represent Patient Power to the media, public and patients. Having personally intersected with the cancer community as a CLL patient, Michele has called upon her reporting background to help others effectively navigate the world of treatments, education and coping skills and become a known CLL influencer. Her video reports and program hosting are viewed on PatientPower.info. Her past journalism experience includes ABC (network), Boston’s NBC and CBS TV news stations. Michele is an FDA Patient Representative, has authored several published articles on global communications topics, is a frequent national conference keynote speaker and a Boston Globe Magazine contributor. She is also a lead moderator for AnCan's Blood Cancer virtual support group. Michele's advocacy efforts were recognized when she was nominated as a WEGO Health Awards Patient Leader Finalist. This is a fascinating dialogue between Michele and Annmarie.

Robin Bennett Kanarek was a registered nurse working with patients suffering from chronic medical conditions when her 10-year-old son was diagnosed with leukemia. As David endured grueling treatments, Robin realized how often medical professionals overlook critical psychological, emotional, and spiritual support for people with life-threatening illnesses. Living Well with a Serious Illness is the culmination of decades of Robin's work to advance the field of palliative care. In addition to her roles as a mother, nurse and palliative care advocate, Robin serves as president of the Kanarek Family Foundation. The foundation’s mission is to improve the quality of life for those affected by serious, life-threatening conditions through promoting, integrating and educating the medical industry and the public about palliative and supportive care in all areas of health care. In this very informative interview with Senior Anchor Elizabeth Linden, Robin explains the value of palliative care and its importance at the end of life.

The tangled, inscrutable bureaucracy of the American healthcare system has given rise to a brand new profession: the patient advocate. Often second careerists from the insurance industry or the healthcare profession, they're independent contractors hired by individuals to help navigate the system to save time, money, and to connect them to resources or specialized care. Karen Vogel, an insurance and administrative advocate, spent 29 years working in the insurance industry and became frustrated at the missed opportunities to really make a difference in patients’ lives. Subscribe to VICE News here: http://bit.ly/Subscribe-to-VICE-News Check out VICE News for more: http://vicenews.com Follow VICE News here: Facebook: https://www.facebook.com/vicenews Twitter: https://twitter.com/vicenews Tumblr: http://vicenews.tumblr.com/ Instagram: http://instagram.com/vicenews More videos from the VICE network: https://www.fb.com/vicevideo

A promotional video done for the Center for Patient Partnerships located in Madison, Wisconsin. This was specifically made by students for the BMO Harris Cheer Challenge where the CPP will be cheering for runners in the Madison Mini-Marathon 2014. You can find more information about the CPP at patientpartnerships.org or on Facebook (search 'Center for Patient Partnerships'). Thank you for watching!

Dr. Donna Prosser, Chief Clinical Officer at the Patient Safety Movement Foundation, is joined by a multidisciplinary group of patient advocacy experts and clinicians to understand the various meanings of the term 'patient advocacy' and to evaluate how an empowered patient can improve healthcare delivery, experience, and outcomes for all involved. The group will discuss the history and current state of patient advocacy, and will propose recommendations regarding the extent to which various healthcare disciplines and patients and their families can improve patient advocacy. National Patient Advocate Services https://www.npaf.org https://www.patientadvocate.org/download-view/paf-services-brochure/ Professional Patient Advocate Directories https://www.gnanow.org https://www.aphadvocates.org/directory/ https://bcpa.pacboard.org/search/custom.asp?id=5640 https://www.nahac.com/find-an-advocate#!directory/map Looking for an Independent Patient Advocate?: 1) https://www.gnanow.org/ 2) https://whitleyptadvocates.com 3) https://getcaribou.com CE provided only for the live event. If you haven’t already provided feedback, please leave it here: https://www.surveymonkey.com/r/386TZLB?utm_source=Youtube&utm_medium=Link&utm_campaign=Impact-for-Routine-Assessment-Survey

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Patient advocacy and support organizations play an important role for patients suffering with diseases or conditions. The goal of these groups is to connect members with others who may be in similar situations and locate resources to manage or treat their condition. But patients aren't the only ones who benefit from these connections. Physicians and researchers also can benefit from getting involved. "Taking care of patients is my passion," says Dr. A. Noelle Larson, a Mayo Clinic orthopedic surgeon. "So it really comes naturally to be interested and involved in my patients' lives." Dr. Larson's clinical and research focus is scoliosis. She has become involved with Curvy Girls Scoliosis, a global support group. Two years ago, she attended their national meeting. Spending time with families and children affected by scoliosis gave Dr. Larson a new perspective. "So often, our encounter in clinic is quite short, and you don't get a sense of the impact of what our treatment has on that child's overall life and well-being," explains Dr. Larson. "These patients know more about living with their condition than the physician does at some level." Beyond the connections patients and physicians make, the medical community benefits in other ways, as well. Support groups can help organize and inform patients about clinical trials that can lead to innovation. Dr. Larson has seen this in her own practice. Feedback from patients led to a Mayo Clinic study on vertebral body tether implant as a surgical alternative to fusing the spine. "That partnership between the families, the patients, and the researchers and doctors, all working together is really critical," says Dr. Larson. "If we really want to make new drugs, new devices, and new treatments, we all have to work together. Because at the end of the day, we all want to get to the same place, which is better care for patients." On the Mayo Clinic Q&A podcast, Dr. Larson discusses the role of advocacy groups and the patient-physician connection. ______________________________________ For the safety of its patients, staff and visitors, Mayo Clinic has strict masking policies in place. Anyone shown without a mask was recorded prior to COVID-19 or recorded in an area not designated for patient care, where social distancing and other safety protocols were followed. FOR THE PUBLIC: More health and medical news on the Mayo Clinic News Network. https://newsnetwork.mayoclinic.org/ FOR THE MEDIA ONLY: Register at https://newsnetwork.mayoclinic.org/re... to access clean and nat sound versions of this video on the Mayo Clinic News Network. https://newsnetwork.mayoclinic.org/

Research advocacy is a partnership between researchers and patient advocates and allows the patient experience to inform the process of cancer research. In this video, patient advocate Patty Spears explains how research advocates bring the patient perspective to the forefront. More Information What is a Cancer Research Advocate? https://www.cancer.net/blog/2016-12/what-cancer-research-advocate

Dove Sinclair hosts this interesting interview with Rafi Salazar, an occupational therapist who is also a practice consultant. Rafi focuses on improving the patient experience, and explains how providers can approach patient care in a different way to make the patient experience a better and more complete experience. This is an excellent interview with one of the country's leading patient advocates.

The Patient Advocate Role: When You Go to Court, You Need a Lawyer; When You Go to the Hospital, You Need a Patient Advocate Most people would agree, if you had to go to court on something, you would hire an attorney. Why? Because they are the experts, they know the ins and outs of a courtroom, and they will fight for your cause. Most people also hire a tax person to do their taxes, because those of us who are not accountants, are not educated in finance, and an expert will do a better job. Shouldn’t your health and well-being get the same consideration? After all it is your health and sometimes your life we are talking about.   What Does Being a “Patient Advocate” Even Mean? “Patient advocates support and promote patients’ rights as they navigate the health care system. Whether or not you are ill, managing your health can be confusing and overwhelming. And when things go wrong, it can be hard to get your voice heard by the health care professionals around you. Health care providers and administrators do not intend to make things difficult for patients, but the system is so complicated that there is not much time for compassion and understanding. A patient advocate can guide you through the confusing maze of health care with caring, sensitivity. (S)he can focus exclusively on your needs and help you resolve concerns about the quality of your care, get the care you need, and ensure that your voice is heard and that you are included in decision-making.” - http://www.assertivepatient.org Let Patient Advocates Help You Interpret and Reduce Medical Bills Gross or Alarming Facts - There Are REAL People Behind These Statistics - Don’t Forget :   -The most germ ridden object in your hospital room is your TV remote control? -90% of all medical bills are incorrect and it is the number one reason for bankruptcy in this country? -12 Million Americans are misdiagnosed every year? -The third leading cause of death in this country is due to medical errors? -Studies show doctors only spend 8 minutes with their patients? Or perhaps your experience is like so many others: -Can’t read your own test results because of all the test codes and medical jargon? Hema-what? ICD-10 code? Huh? -You’re not alone: according to one recent study, up to 90% of hospital bills contain errors -The Huffington Post, March 24, 2015 tells us in a study done by Harvard University, the #1 reason for bankruptcy in this country is medical bills -And furthermore, “72% of those who filed bankruptcy due to medical expenses had some type of medical insurance, thus debunking the myth that only the uninsured face financial catastrophes due to medical related expenses” -In an article by CBS, 12 Million Americans are misdiagnosed each year (CBS News, April 17, 2014) -CBS also reported that per a study done in a journal by BMJ Quality and Safety, the 12 million people seeking outpatient care who were misdiagnosed represents 1 out of every 20 people, and apparently half of those patient diagnoses could result in serious harm -The trend is now 11 to 15 minutes for a doctor to spend with a patient. Often it is more like 5 to 7 minutes spent with the patient because that allotment of time usually includes the charting (USA Today, April 20, 2014) -As a result, another study suggests that medical errors are now the third leading cause of death in the U.S. (Johns Hopkins Medicine May 3, 2016 - this study was conducted over an 8-year period) -The results of the study showed that the third leading cause of death equates to 250,000 deaths per year due to medical errors Don’t be a statistic - This is the Better Patient Advocate Definition Patient Advocate Duties - What an Advocate Can Do for You? -Research diagnosis and all treatment options -Patient Advocates Help Interpret Medical Charts -Assist in getting a second opinion -Preparation and accompaniment to doctor’s appointments -Hospital bedside monitoring -Review medications -End of Life planning and paperwork (i.e. living wills, POST, DNRs, Advance Directives, etc.) -Assist with filing insurance claims and disputing denials -Choosing health insurance -Mediation -Help in filing for Social Security, Disability or other assistance -Assisted living or nursing home recommendations -Track paperwork and records -Pain Management -Patient Rights -Age in Place -Financial Advocacy -Review Medical Bills Looking for more answers? Going through a rough situation right now? Would you consider giving us the opportunity to be that Patient Advocate for you? Values Based Patient Advocates is located at 5180 Parkstone Dr. # 160, Chantilly, VA 20151 and Our Patient Advocate Office is ever just an email or phone call away: 703-222-1300 Looking for more info? Have you downloaded our best practices health guide yet? Here’s what you get: Patient Advocate Services – A Best Practices Patient Health Guide Download it here ⇒ https://valuesbasedpa.com/get-a-free-copy-of-my-health-guide/