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  • 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

  • 01:01

    Powerful Patient meets Youth Services

    in Health

    Father Donald E. Mowery is the retired leader of Youth Services globally.  He has had a radio show, Talk it Out with Father Don, on WHBQ radio in Memphis, Tennessee, for the past 45 years.  This month Joyce Graff appeared on his show.  Joyce and Father Don have a great conversation about Powerful Patient and its mission, and also about Youth Services and its mission, highlighting many parallels.  In both cases, they work to empower people to work through the issues they cannot change and tackle constructively the things they can change.


    Learn more about Father Don.  A new book, Spiritual Networking, by Darrell B. Uselton and David Yawn, recounts the history of Youth Services in Memphis and worldwide.

  • 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. 


     

  • 00:31

    Cautious Patient Communities Chat

    in Health

    Come and join the Cautious Patient Communities where  patients and families learn how to be informed and involved in their healthcare. This leads to better healthcare outcomes, as well as a sense of no longer being an outsider in your own care!
    Take control and be part of the solution to learn more about being responsible and effective advocates for yourselves and your loved ones.

  • 00:31

    Cautious Patient Communities

    in Health

    Monday night, November 11, meet Jeff.  Learn about how he spoke up and his actions of being informed and getting involved changed the course of his care and maybe even saved his life!
    About CPC Blog Talk Radio:  Join us as we chat about how we became Cautious Patients. Cautious Patient Communities is a group where patients and families learn how to be informed and involved in their healthcare. This leads to better healthcare outcomes, as well as a sense of no longer being an outsider in your own care!
    Now we can share what has worked during this 30 minute Blog Talk Radio show!

  • 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.

  • 00:34

    Improving Your Patient Skills

    in Health

    Maria Hester, M.D., is a physician in the Washington DC area who is committed to patient empowerment. 
    Through her corporation Savvier Health, she offers on-site workshops at area corporations to improve employeers' "patient skills." 
    Led by a practicing physician or nurse practitioner, the workshop aims to coach people to become confident health care consumers empowered to help expedite their own care, slash their own (and their employer's) health care costs, and communicate with medical professionals on an unprecedented level. Participants learn: - Invaluable 'patient skills' that will change their approach to health care forever - How to expedite their own diagnoses - Ways to slash their medical bills - How to get the most out of each and every doctor's appointment - Why many people are admitted to the hospital unnecessarily - How to make each hospitalization safer - How to minimize visits to the doctor - The ABC's of effective patient-doctor communication - How to decrease the risk of a medical error - Valuable tools to help them navigate the medical system - Tips to live longer, healthier lives - The basics of medical decision-making - How to prepare for medical visits in advance
    Her blog, "Teachable Moments," is carried in nationally recognized e-Hospitalist News, which is dedicated to teaching other physicians ways to empower their patients. Her book "Your Family Medical Record: An Interactive Guide to Getting the Best Care" was Published by John Wiley & Sons, Inc. in 2000.

  • 00:08

    Hello and Welcome to Medical Marijuana Patient Education

    in Education

    This seven minute recording introduces your host, Dr. Christian Hageseth III.  A 74 year old retired physician who has Parkinson's Disease, he has worked with medical cannabis for three years.  In that time he discovered that persons with little prior experience with cannabis frequently fail to continue because of ineffectiveness or negative side effects. Starting medical cannabis is not as simple as just lighting up a joint.

  • 00:15

    Patient Support - taking care of Michigan

    in Health

    Fran Mott has been the Chapter Leader in Michigan for the VHL Family Alliance since 1994.  What that means is that she is in charge of taking care of people with von Hippel-Lindau throughout Michigan.
    Von Hippel-Lindau (VHL) is a genetic cancer syndrome, caused by one tiny misspelling in one gene, the VHL gene.  People who carry this alteration are at increased risk of having one or more tumors in a variety of places in the body.  There is currently no magical cure, it's all about watching out for issues, finding them early, and getting the right treatment at the right time.
    Fran has worked with physicians at University of Michigan Medical Center and other hospitals throughout the state to become more aware of VHL, diagnose it earlier and more accurately, and help people manage their health.  The University of Michigan has created a Clinical Care Center for VHL, part of the CCC program of the VHL Alliance.
    Fran is retiring this year after nearly 20 years of volunteer service to her neighbors throughout the state.  Joyce speaks with Fran about her experience as a patient herself, a mother, and a volunteer in service to others with this rare disease.
    The VHL Alliance will hold its Annual Meeting September 21, 2013, in Ann Arbor, with a dinner September 20 honoring Fran and Dr. James Montie of the U of M. 
    For information or to register for the meeting, see http://vhl.org/meetings

  • 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.

  • 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.