SORT BY Relevancy
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
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.
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.
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.
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.
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.
in Indie Music
HTLV – Highlighting Mr. Ambition & Patient Picasso
Mr. Ambition, Global Mafia Entertainment – CEO and Entertainer, based in Oakland, CA, brings a wealth of talent, know-how and knowlege to the recording industry. Mr. Ambition and his partner are bringing some of the hottest artists from California. Such acts like Menacedeleon, Cali Barnes, JLuv, Da Thug, Yung Tank, Denial One, P Dub, as well as Mr. Ambition, himself.
Patient Picasso (Music Producer/Hip Hop Artist) – Hailing from Los Angeles, CA, Patient Picasso is taking the music industry by storm, and with a vengeance. His style of production and music delivery is unmatched by many. With producer credits such as Gmalone (YMCMB), Uncle Chucc (1500orNothin), Hustyle Boyz (DoggyStyle Records) and Sylk.E.Fyne, there is no wonder this producer/artist is making a name for himself in the Hip Hop world.
Join Tea Time and Toni Breedlove on Thursday, January 7, 2016, at 7:00pm PST/10:00pm EST, as they sits down with these two very captivating artists to discuss life, the art of music, and what we can look forward to hearing from them now and in the future.
Your questions and comments to these amazing talents are welcome by dialing (646)200-3148. Or listen and join the chatroom conversation here on Blog Talk Radio.
** The Hot Topics Talk Radio Network is sponsored by Shades of Afrika (Corona & Long Beach), A&L Family Restaurant and SPMG Media. For information regarding our sponsors, go to: www.hottopicstalkradio.com/sponsors.
Diane Tomaz of the Massachusetts Adoption Resources Exchange (MARE) talks about adoption and the needs of the children waiting in foster care.
Many of these children have special needs. Addy is a good example.
Addy is a 4-year-old Caucasian girl who continues to make tremendous progress in her growth and development. Addy has some developmental delays and a genetic condition called Micro-duplication syndrome, which can present as having Autism like symptoms and behavioral challenges. She will need to be formally re-evaluated in the future to determine if she still falls on the Autism spectrum due to the tremendous progress she has made.
Addy attends pre-school with the support of an Individualized Educational Plan. She is no longer in a self-contained classroom due to the gains she has made and she is now in an integrated preschool program. Addy’s speech has also increased and she continues to receive speech therapy at school to assist with her speech delays.
Legally freed for adoption, Addison will need a family that is prepared for her needs and the unknowns that come with it. A family that has parenting experience would be preferred.
Addison will need a family that is able to keep her in contact with her younger sister and grandmother with four to six visits a year. She also has an open adoption agreement with her birth mother for post-adoption visits.
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.
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.
Are you pro-life or pro-choice? If you're pro-choice, that means that you must be pro-assisted suicides, right? Well, in many political debates, assisted suicides are the new abortions. Many Republicans and Democrats are split on this topic. How do you feel about someone who's terminally ill, has little to no chance at living, and they prefer that the physician takes their life? If the patient insist on the doctor/physician taking their life, should that request be granted? Have you seen cases where people have been told that they only have a certain amount of time to live, but their life surpasses that time? What is the responsibility of the physician? What's the responsibility of the patient? Where do we draw the line between personal choice and social responsibility?
Tune in to Darryel's Daily Dialogue...."where positive words, manifest positive action."
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