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  • 00:29

    Why Every Hospital Patient Needs an Advocate

    in Health

    eCareDiary's caregiving expert, Margery Pabst will speak to Bonnie Friedman, owner of a consultancy business and a crusader for healthcare advocacy about why patient advocacy is crucial and how caregivers and patients can intervene in hospital communication.

  • What is a Pit Bull? What is a Pit Bull Advocate?

    in Pets

    Join Dogfather and Joe with Guests Cheryl Huerta (Portland Pit Bull Project) and Chew Davis (Miami Coalition Against BSL). We'll be discussing the catch all name Pit Bull and how it emcompases 3 distinct breeds of dog (The American Pit Bull Terrier, Staffordshire Bull Terrier and  American Staffordshire Terrier.), and in some cases, breeds unrelated. We'll discuss the history of the breed(s) and their working origins, long before the fighting dogs so many people focus on today. We hope you will join us with your thoughts, questions and comments. Phone lines open at the top of the show. 347-838-8615

  • 00:31

    Who is Listening to the Patient Voice?

    in Health

    Robin and Joyce speak with Lesley Bennett, state coordinator for the National Organization for Rare Disorders (NORD) in Connecticut, about the importance of the voice of the "consumer" in healthcare as in retail or other "marketing" relationships.


    Joyce and Lesley recently attended the annual meeting of the New England Regional Genetics Group (NERGG) in Portsmouth, New Hampshire.  What role should consumers play in a professional organization?  NERGG has included consumers in its governance for the past 38 years, and yet they are still struggling to define a clear role for consumers in the workings of the organization.


    What do consumers want? How can organizations work with them to include them in constructive ways?


    Who is Listening to the Patient Voice?



    Patients and the regulatory process - appraisal, approval, access issues
    Patient involvement in clinical trials -  design, recruitment and retention
    Patient involvement in the design of hospital cancer services
    The patient voice in kidney cancer guidelines/pathways

  • 00:24

    Patient Access and Intake and You

    in Health

    As more and more hospitals, clinics, and doctors merge and integrate into large health systems. It can become confusing for patients to know where and how to receive care. Coordinating efforts to improve patient access and intake takes serious strategy and planning across the entire enterprise. Singola is here to help.

  • 00:32

    Patient Information - new info for VHL

    in Health

    There are many challenges common to all rare diseases:


    1. How to get a correct diagnosis?


    2. How to find doctors who understand the condition and can provide therapeutic help.


    3. How to manage day to day, making choices and getting medical help to moderate the symptoms and maximize one's quality of life.


    The VHL Alliance assembled its first collection of guidelines for patients and their general doctors in 1993, and has been evolving it regularly since then as new information has emerged.  This is now one of the best established Handbooks for a rare disease -- now in its 5th edition, and translated into 15 languages.


    Joyce and Robin speak with Suzanne Nylander, O.D., editor of the 5th edition, about what's new in the Handbook, how the Handbook helps both patients and doctors, and what they have learned about the power of sharing information -- among patients and among physicians and healthcare systems worldwide.


    Hard copies are available for purchase from the Alliance or from Amazon.com.  You can download the text for free at http://vhl.org/handbook.

  • 00:46

    What is a Pit Bull? What is a Pit Bull Advocate?

    in Pets

    Join Dogfather and Joe with Guests Cheryl Huerta (Portland Pit Bull Project) and Chew Davis (Miami Coalition Against BSL). We'll be discussing the catch all name Pit Bull and how it emcompases 3 distinct breeds of dog (The American Pit Bull Terrier, Staffordshire Bull Terrier and  American Staffordshire Terrier.), and in some cases, breeds unrelated. We'll discuss the history of the breed(s) and their working origins, long before the fighting dogs so many people focus on today. We hope you will join us with your thoughts, questions and comments. Phone lines open at the top of the show. 347-838-8615

  • 00:30

    Should I go to Patient Support conference?

    in Health

    What happens at a patient support conference? Is it worthwhile to go, or will it be stressful? 


    Carla talks with Robin and Joyce about her own recent experience. 


    Carla applied to the New England Regional Genetics Group (http://www.nergg.org) for an A. Merrill Henderson scholarship to attend a patient support conference.  This grant enabled her to attend and learn. 


     

  • 01:58

    Marian Hollingsworth: Medical Abuse of My Father & becoming a patient advocate

    in Parents

    Hosted by Marti Oakley & Debbie Dahmer


    My father, Keith Blair, went into the hospital in July of 2009 for diagnosis of back pain. Without our knowledge or consent, he was given a cocktail of Risperdal, Haldol, Ativan, Tylenol with codeine, and Morphine. When I asked the doctor about this, he said it was just "hospital delirium,"  Sent to a  nursing home, my father was given more antipsychotic drugs, along with double doses of AmbienCR, the long acting version of the drug. He ended up with the bad side effects of these black box drugs such as heart trouble, severe dehydration and kidney trouble, and sudden diabetes. He also contracted a MRSA eye infection which spread to his lungs, fell 7 times in 12 days and developed a bedsore. (He was only in the nursing home 18 days.) He ended up a second hospital due to heart and kidney problems, where the same nursing home doctor treated him.) At the second hospital, he was given daily Risperdal, and we were told to prepare for his death. When I went through the records later, I discovered that a cardiologist said he was improving and that he could be released to the nursing home in a few days.


    2. How to get ALL the records.


    3. Your rights in a hospital or nursing home as a patient or family member. Know the codes in your state so you can use them. if needed, if facilities try to violate these rights.


    3. Dealing with the health department for complaints. Your rights in a complaint. The complaint in my father's case resulted in a new policy from the health department, AFL 1108. It mandates that nursing homes must verify that patients on antipsychotic drugs being transferred from hospitals have informed consent forms in their records, and if not, that informed consent must be obtained before the drugs can be given.


    4. Dealing with the medical board for complaints.


     

  • 00:56

    Survival Advice From An E.R. Nurse & Hospital Administrator, RN Susan Shepard

    in Caregiving

    Now available on podcast!  RN, Susan explains how to get the best possible care from doctors, nurses and hospital stays, and how to avoid burnout. Join dave, The Caregiver's Caregiver for this exciting interview.

  • 01:00

    Author Robin Farmanfarmaian on The Patient as CEO

    in Health

    How can we understand the current medical revolution that is driven by accelerating technologies and thus be empowered? Join us as bestselling author Robin Farmanfarmaian talks about how medical technology can empower the consumer.


    Robin Farmanfarmaian is an entrepreneur, founder, speaker and best selling author working in cutting edge technology and medicine. Currently Farmanfarmaian is the COO and SVP of Arc Fusion Programs, working on the fusion of medicine, science and IT, and a VP at INVICTA Medical, a device company for sleep apnea. A life long philanthropist and mentor, she is the Co-Founder and on the Board of Directors (formally Executive Director) for the Organ Preservation Alliance, catalyzing breakthroughs in organ banking for transplants and tissue engineering, and President for the Innovation for Jobs Summit, finding solutions to disrupt unemployment.  Robin is on the advisory board of many startups and conferences, and mentors female entrepreneurs. Previous work includes being one of the founders of Morfit, the Exponential Medicine conference, and a VP at Singularity University. Her book, “The Patient as CEO: How Technology Empowers the Healthcare Consumer”, is a #1 Best Seller on Amazon.

  • 00:46

    VACCINES & VETERANS ~ Anita Stewart on "Public Advocate", Host Sallie O. Elkordy

    in News

    Anita Stewart has her own radio program, "Wise Women" http://www.wisewomenmediaradio.com


    "Public Advocate" Host, Sallie O. Elkordy for Mayor, Vaccine Free NYC


    Blog with 11/11 Event http://BillionToddlerMarchForSurvival.blogspot.com
    Legislation for a Vaccine Free 2015 http://tinyurl.com/VaccineFree2015


    "VACCINE FREE to VICTORY!"