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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
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
Multi-Disciplinary Care for the Pediatric Patient with OI - Dr. Cathleen Raggio
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.
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.
In the United States we are privileged to have some of the best medical care facilities in the world, and some of the most talented physicians. But not everyone in the United States is able to access these services. What we are working to improve through the Affordable Care Act (ACA, sometimes referred to as Obamacare) is access to that care, and moving from a system that focuses on fixing medical problems, to a system and a mindset that focuses on PREVENTING medical problems.
Memphis, Tennessee, is an interesting case in point. In Memphis, some 20% of the population has incomes below the poverty line, and a very high percentage among the "working poor." Some qualify for Medicaid, but many do not. People who are uninsured or "under-insured" often find themselves in need of medical care that they cannot afford. One serious illness or automobile accident can easily bankrupt the household.
Church Health Center has worked for many years to help fill the gaps in health care in Memphis. Robin and Joyce speak with Jeff Hulett of Church Health Center about their work. With the ACA their role is changing, but their work is by no means done. See more at <a href="http://churchhealthcenter.org">http://churchhealthcenter.org</a>
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.
Patient Innovations and OnTime Care® is designed to focus on the needs and goals of both the patient and the facility they are in.
Aiming for a higher level of efficiency and care is always a goal. You can have any business and apply that thought. Ken Greenberg and Akram Boutros, MD FACHE have designed a system that can you take that thought and make it into an actionable idea.
Ken Greenberg, 516-983-4050, firstname.lastname@example.orgAkram Boutros, MD FACHE, 516-815-8118, | email@example.com
Ken Greenberg explains Patient Innivations on the Daily Blu with ask Mr. Long Island.
Strategies of Success
Brian A Cohen Host
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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