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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.
Dave deBronkart has a well-earned reputation as an e-Patient. An internationally recognized speaker, author, and health policy advisor, he has words of strength for patients for sure.
In addition, he works with physicians, hospitals, and pharmaceutical companies to help them Let Patients Help!
When most manufacturers decide to create a new product, they do market research and conduct focus groups to determine in advance what the consumers want.
In medicine, it's mostly about what the doctors want.
But the doctors are not the end-user consumers in medicine, they are talented and experienced personnel, but the end-user consumers are the patients.
Come hear what Dave believes are the many ways that Patients can help improve healthcare.
See also Dave's new book, Let Patients Help! A patient engagement handbook - how doctors, nurses, patients and caregivers can partner for better health care. http://www.epatientdave.com/let-patients-help/
Audio clip credits:
Gimme My DaM Data – Maastricht, 2011
Posted by WellApps, https://www.youtube.com/watch?v=0b4li7N_7Ck
Music Video by the Collaborative Agency Group, 2013
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.
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.
L*I*V*E On Air Readings with popular Firefly Willows L*I*V*E host, HiC Luttmers ((r)Evolution and The Amethyst Oracle).
Skype in or call 646.716.5510 during the show to receive a reading L*I*V*E on the air.
• Tarot • Intuitive Coaching • Runes • Animal Medicine • Shamanic Coaching • Psychic Messages • I-Ching •
Call 646.716.5510 or Skype in during the L*I*V*E show and receive a free reading.
Got a question? Got a problem? Need some guidance?
• Relationships • Money • Love • Career • Life Path •
Bring a question, and we'll look at what guidance Spirit has to offer you.
Mike and Joyce speak with Dr. Julia Hallisy about The Empowered Patient Coalition: providing healthcare improvement and patient safety tools directly to consumers.
About Dr. Hallisy:
Dr. Julia Hallisy obtained her BS in Biological Science from the University of San Francisco in 1984 and a second Bachelor’s degree from the University of California in Dental Sciences. In 1988, Dr. Hallisy received her Doctorate in Dental Surgery from the University of California at San Francisco School of Dentistry. Since that time, she has been a full-time practicing San Francisco dentist.
Her second child, Katherine Eileen, was diagnosed at five months of age with bilateral retinoblastoma. Dealing with her daughter’s life-threatening diagnosis, the many recurrences of cancer, and the subsequent treatments for the malignant and aggressive tumors marked the beginning an almost 20-year involvement in our healthcare system. The unique combination of her scientific training, her work as a healthcare provider, and guiding a child through a chronic illness has afforded her invaluable insight as an advocate for patients.
Dr. Hallisy began to research the topic of patient safety in 1998. She has lobbied for health care reform in Washington, DC with Consumer’s Union.
Dr. Hallisy is committed to and passionate about the subjects of patient safety, health care reform and medical error reduction. She is the founder and president of The Empowered Patient Coalition.
Dr. Hallisy was born and raised in San Francisco, where she lives with her husband, John Hallisy, and their two sons, Daniel and Kevin. The Hallisy’s ten-year old daughter, Kate, lost her life-long battle with cancer in February 2000.
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