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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.
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.
Input, Solutions, Culture
Pharmaguy interviews Anne C. Beal, MD, MPH, Chief Patient Officer, Sanofi, and Melva T. Covington, MPH, MBA., PhD, Project Leader, Research and Develooment, Sanofi. They talk about their roles in bringing the patient perspective into Sanofi's work to advance Sanofi's ability to deliver health care solutions that matter most to patients and those who care for them.
Questions/Topics of Discussion
How do you define "Patient-Centricity?"
Tell us more about the three pillars of Sanofi's Patient-Centric Strategy. How do you get patients' input? Do you have any patient advocates on your team who are not physicians but who have worked extensively with patients?
Are we talking only about patient-centricity in the context of research & development? What about corporate and marketing communications?
What's the most difficult hurdle for pharma to overcome to be truly patient-centric?
Why did Sanofi create the role of "Chief Patient Officer?" How is it different from "Chief Medical Officer?" What do you do as Sanofi's Chief Patient Officer? Can you relate a case study which demonstrates how you implemented your strategy?
What other pharmaceutical companies have Chief Patient Officers? Do they all have similar roles? Will all pharma companies follow?
Join Margaret Sisson and me as we discuss the two perspectives of what it is like when a daughter/son is placed in a psych hospital from the parent and patient angle.
Stigma is so rampant when it comes to hospitilization and the emotional effects can be lasting and devastating on the individual and the families.
Let's break down some stigma and get to the root of the issues!
Joyce speaks with Ellen Matloff, geneticist, about her newest venture, MyGeneCounsel.
Ellen Matloff, MS, CGC is the President and CEO of My Gene Counsel. Ellen is the founder and former director of the Cancer Genetic Counseling Program at Yale School of Medicine and a lead plaintiff in the 2013 United States Supreme Court gene patent case. Ellen has authored more than 50 scientific publications in the field, is an established educator, lecturer and media spokesperson and has received national awards for her ongoing patient advocacy efforts.
She was the 2013 honoree of ArtBra New Haven for her work with hereditary breast cancer, and particularly for helping to challenge the validity of patenting the genes for breast cancer.
Ellen’s area of special interest is BRCA I and BRCA II mutations, which vastly increase the probability of a carrier developing breast and/or ovarian cancer. For the past 18 years, she has been dedicated to patient and provider issues in cancer genetic counseling, and the impact of genetic patents on patients and clinical practice.
Ellen was one of the lead plaintiffs in Association of Molecular Pathology v. Myriad Genetics, the landmark case before the U.S. Supreme Court, which challenged the validity of patenting naturally-occurring substances from the human body. Myriad Genetics had patented the BRCA I and II genes, and held the monopoly on testing. This effectively froze research, and made necessary testing unaffordable for many patients, leaving them to make huge decisions about their treatment without vital information. Ellen worked tirelessly for the interests of breast cancer patients and their families.
In the past, in even the best of doctor-patient relationships, it was usually the doctor who made the final decision about treatment. Now that's changing. On this week's program, we explore "participatory medicine" with patient-engagement advocate Dave deBronkhart, Jr., better known to his blog followers as e-Patient Dave. Also on the program, Mayo Clinic ophthalmologist Dr. Raymond Iezzi, Jr., talks about the bionic eye, […]
Laprill O’Brien is a registered medical marijuana patient who has beat cancer twice and suffers from manic bipolar disorder. On the morning of July 7, 2014 her home in Diamond Bar was raided by police because they were growing marijuana. Ms. O’Brien was held in jail for five days and her children were taken by CPS.
Although they have gotten their children back, she and her husband, Rick Gromoll have been charged with illegal cultivation with their next court date set for April 23 in Pomona. As the show’s first guests, Laprill and Rick will reveal the horrors that happened that day, how it has affected their family and how their court case is proceeding.
Wondering whether the VA directive stating veterans who use medicinal marijuana should not be kick out of their pain management programs is being implemented? Then meet Ken Whitemire, a veteran receiving services from the Loma Linda VA Hospital for chronic pain related to service connected injuries to his back and neck. He had been kicked out of his pain management program because of his use of medicinal marijuana.
On Monday, March 30 he went back to his pain management doctor with the new directive in hand and became the first medical marijuana veteran to be reinstated into a pain management program as a result of the new directive. What happened when Ken confronted his VA doctor is remarkable, astounding and ever so invigorating.
The TEAM WORK READY RADIO SHOW is hosted by Jeff Rose, Ms. Carmen Watkins, Frankie Sanders, Mrs. Pamela Rose, and others plus great guests.
Segment 1: "Jeff Rose is Ready for the Jefferson Davis High School's 34th Class of 1981 Reunion"
Segments 2 & 3: "Shout Out Time! - Patient Praises"
Segment 4: "Ricky Winslow, Former NBA Pro and Founder of the ROWDY Foundation, 281-451-0195, www.ROWDYfoundation.org"
Team Work Ready, 877-983-2696 or 713-661-2100, www.TeamWorkReady.com
Joyce and Mike speak with Georgia Hurst as part of Lynch Syndrome Awareness Week.
Georgia Hurst is a patient advocate for those with Lynch syndrome. She is the founder of the website and blog: <a href="http://ihavelynchsyndrome.com">ihavelynchsyndrome.com</a>. She frequently writes about the emotional aspects of having Lynch syndrome, and writes for various websites and journals in order to create awareness amongst the global medical community about this hereditary cancer syndrome. Georgia is a wife and mother, and loves espresso, books, and being bossed around by her adorable dog named Sid.
What is Lynch syndrome? We will learn more from Georgia, or you can read about it on her website, or in this article from <a href="http://http://www.curetoday.com/community/georgia-hurst/2015/02/i-have-lynch-syndrome">www.curetoday.com</a>
Georgia noticed that there were several people in her family who had cancer at early ages, and several with the same cancer. This can indicate that there is something genetic predisposing family members to cancer. She delved deeper, got to a diagnosis, and kept asking questions, finding out how to protect herself and others in her family from the worst consequences of this condition.
Hear her remarkable story, the path she followed in doing her own research, and the partnerships she has developed with medical professionals to help her make progress for herself and others.
TUESDAY, MARCH 31 - 1:00 PM PST
Tonight our incredible special guest is Patricia Ortiz, Vice President of Patient Liaison at Rare Diseases Patients First! a nonprofit organization that focuses on educating patients with rare diseases about the clinical trial and drug development processes.
Patricia Ortiz began her professional career working at the National Metrology Institute in Germany and has expertise in many different engineering disciplines including precision engineering, nuclear physics, and quantum optics. Later she shifted her focus to Biomedical Engineering. Upon completing her Master’s Degree in Biomedical Engineering at the University of Applied Science in Luebeck, Germany she has worked for large medical device and biotech companies as well as small startups, leading cross functional team in medical software and diagnostic instrument development within the US and overseas.
Rare Diseases Patients First! is a nonprofit organization that was founded by Dr. Lorna Speid in 2014 and focused on educating patients with rare diseases about the clinical trial process and drug development.
Visit their Facebook page: https://www.facebook.com/rarediseasesPF
Visit their Twitter page: https://twitter.com/rarediseasesPF
Carin J. Cornish is an attorney. She specializes in Special Education Law -- not the most lucrative specialty in law practice, but one which she find extremely rewarding in other ways. All children have their own ways of learning, not all of which fit neatly into mainstream classrooms. Cari is committed to helping to create the right nurturing environment for every special child. She works through the Children's Law Center of Massachusetts.
Cari talks with Joyce about the path that has led her to this specialty, and to her work with the New England Regional Genetics Group (NERGG).
Sanfilippo syndrome was first described in 1963 by Dr. Sylvester Sanfilippo and is considered rare, with an occurrence of 1 in every 70,000 births. It is an autosomal recessive hereditary disorder, which means, both parents must be carriers in order for the child to be affected. There is a one in four chance of having a child born with Sanfilippo syndrome. There is a two in three chance that unaffected children will be carriers.
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