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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
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.
In this episode I interview e-Patient Dave, Dave deBronkart. Dave shares his journey, his story and the need for patient partnerships and collaboration in health care management. Guest Bio Dave deBronkart, known online as e-Patient Dave, beat stage IV cancer in 2007 and became a blogger, keynote speaker and health policy advisor. He is today the leading spokesman for patient engagement, attending over 150 conferences and policy meetings internationally in the past two years. He serves a
Join us as we're joined by Richard Tate (Vice President, Communications & Marketing for HopeLab) and Shwen Gwee (VP of Digital Health at Edelman, Founder of SXSH Social Health and the blog Med2.0) to discuss the evolutionary changes in digital health and the rise of the empowered patient movement. Survivor spotlight on author and radio host Joni Aldrich (Caregiving SOS)
Karen Mercereau is a nationally recognized visionary leader in healthcare, known for her ability to transcend challenges, and create opportunity from complexity. This was the quality behind her founding of RN Patient Advocates in 2002, for which she received a Purpose Prize Fellowship. A clinical RN for 45 years in diverse intensive care as well as community health settings, Karen was also integral in developing the first hospice in Tucson, AZ. Recognizing the dearth of public health programs available in the AIDS community in the late 1980’s, she chaired a countywide consortium to develop AIDs relief programs in Tampa Bay. Karen has also been instrumental in the design and implementation of hospital and health care systems, lecturing nationally on their wider applications. Currently, Karen heads the RN Patient Advocate Learning Intensive in association with the University of Arizona College of Nursing. This immersion learning program for qualified clinical RNs prepares them for the development of their own practices as independent RN Patient Advocates (iRNPAs).
Karen is also the leader of the RN Patient Advocate Group Practice in Southern Arizona comprised of independent RN Patient Advocates who provide both individual RN Patient Advocate services as well as community health literacy programs. She is the President of Health Education and Advocacy Leaders, Inc., a foundation she started to support community health literacy programs.
Joyce is traveling to ten cities in September and October. Mike interviews her about who she saw, what she did, and what she learned.
Sept 20-21, Ann Arbor, Michigan
Sept 28, London, England
Oct 5-8, Budapest, Hungary
Oct 10, Oxford, England
Oct 12, Cardiff, Wales
Oct 13-15, Belfast, Northern Ireland
Oct 17, Dublin, Republic of Ireland
Oct 23, Nottingham, England
Oct 24, Birmingham, England
Oct 27, Manchester, England
For more details, see http://www.facebook.com/vhlfa/events
See also Blog Posts at http://www.powerfulpatient.org/blog
I am happy to announce that Pat Rullo is returning to the show to discuss patient safety issues. Pat is the author of Speak Up and Stay Alive an amazing book and manual on staying alive and being safe in the hospital. Her book is the story of her journey while caring for her mother in the hospital. She learned very quickly that even with the best doctors and nurses, patients could still be a risk for falls, infections and misdiagnosis.
Pat is now an expert in all things patient safety related. She has dedicated her life to getting the information to everyone. Beside her book, and many lectures, she is host of the Patient Safety Radio Show, a weekly show heard live in Phoenix and Cleveland areas. Recorded episodes can be downloaded at www.patientsafetyradio.com
Pat is relentless in pursuing areas of safety that many people aren't aware of. Today's show will include not just her story but a look at the issues of increased exposure to radiation from CTs,Xrays and cell phones. I know if Pat is concerned, so should I. Listen in folks. This is one show you will want to take notes!
Truvio Emphasizes the Importance of Patients' Voices
A conversation with WEGO Health CEO Jack Barrette and Fabio Gratton, co-founder and CEO of Vocalize, about Truvio, a new mobile-based market research tool that brings patient opinion leader insights to life with data visualizations and audio commentary.
Find more information about this podcast here.
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