A Call to Consumers to Lead the Shift in Healthcare

Sharon TerryRecently Sharon Terry a Disruptive Woman and CEO of the Genetic Alliance joined Mendelspod to kick off their new series, Personalized Medicine and the Consumerization of Healthcare. Over the last twenty years Sharon has worked tirelessly as a patient advocate, advocating for the sharing of patient data long before others were doing so.

Here what Sharon had to say on the topic here.

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Why Patient Autonomy Is Critical To Good Health Care

Val Jones, MD

The post below originally ran on Better Health on February 24th.

Many of the patients that I treat have brain injuries. Whether caused by a stroke, car accident, fall, or drug overdose, their rehab course has taught me one thing: nobody likes to be forced to do things against their will. Even the most devastated brains seem to remain dimly aware of their loss of independence and buck against it. Sadly, the hospital environment is designed for staff convenience, not patient autonomy.

In the course of one of my recent days, I witnessed a few patient-staff exchanges that sent me a clear message. First was a young man with a severe brain injury who was admitted from an outside hospital. EMS had placed him in a straight jacket to control his behavior on his trip and by the time I met him, he was in a total panic. Sweating, thrashing, at risk for self harm. He didn’t have the ability to understand fully what was happening but one thing he knew – he was being restrained against his will. The staff rushed to give him a large dose of intramuscular Ativan, but I had a feeling that he would calm down naturally if we got him into a quiet room with dim lights and a mattress with wall padding set up on the floor. (more…)

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  • January 13th, 2015 Filming in the ER: A Policymaker Perspective
    By Glenna Crooks
  • Healthcare’s Renewable Resource: Authentic Patient Experience

    kym

    Cancer is my medical degree. Navigating my way through three distinct cancer diagnoses across three unique stages of life and managing three different treatment paths is my specialty. In the course of enduring Hodgkin’s Lymphoma at age 17, melanoma at 38 and, in 2012, breast cancer at 46, I’ve amassed firsthand expertise in the critical areas of patient-provider communications, care coordination, patient safety, insurance reconciliation, disease prevention, and personalized treatment planning.

    From the time of my first cancer diagnosis over 30 years ago to today, cancer has influenced my life and risk of future disease. To put my experience in perspective, the collective time I spent in the throes of surgery, recovery and treatment of my two most significant diagnoses – Hodgkin’s lymphoma and breast cancer –totals twelve months. So, I have spent only 1/30th of my cancer experience fully immersed in the healthcare system. (more…)

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    The Day I Made Peace with an Errant Organ

    c Here’s my theory: few health crises in life are as traumatic as surviving a cardiac event. I developed this theory while I was busy having my own heart attack in the spring of 2008.

    For starters, heart attack symptoms often come out of the blue (in fact, almost two-thirds of women who die of coronary heart disease have no previous symptoms. Having a heart attack can feel so unimaginably terrifying that almost all of us try desperately to dismiss or deny cardiac symptoms. And according to a 2013 report published in Global Heart, the journal of the World Heart Federation, women are twice as likely to die within one year even if they do survive a heart attack compared to our male counterparts.

    So if – and each of these is still, sadly, a great big fat IF for too many women – we survive the actual cardiac event, and if we are near a hospital that’s able to provide an experienced team of cardiologists/cardiovascular surgeons/cardiac nurses, and if we are correctly diagnosed, and if we receive timely and appropriate treatment, and if the resulting damage to our oxygen-deprived heart muscle is not too severe, we get to finally go home, safe and sound.

    And that’s where the real trauma starts.   (more…)

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    Has Patient-Centered Health Care Run Amok?

    Trudy-Lieberman -- biggerBeginning with the Institute of Medicine’s (IOM) landmark Quality Chasm report in the late 1990s, the health policy establishment, the medical profession and the American public began to hear a new and disconcerting message: American health care was not patient-centered.

    The IOM prescribed a number of recommendations to redesign health care delivery, one calling for patients as the source of control over their care. “Patients should be given the necessary information and the opportunity to exercise the degree of control they choose over health care decisions that affect them,” the IOM recommended, noting that patients should have access to their medical (more…)

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    Delete Blood Cancer: What You May Not Know About Bone Marrow Donation

    Terri Prof Headshot 0412We all know about blood drives and the importance of blood and platelet donations to save lives. And millions of people are registered organ donors (usually when they get their driver’s license). But did you know that there is another renewable, life-saving resource you could give?  It’s your blood stem cells/bone marrow. Only 11 million Americans are registered with the National Marrow Donor Program to help save lives if their blood stem cells match a person fighting any one of 70 blood cancers and diseases. (more…)

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    Mind-Body (in my case Mind-Butt) Connection

    Archelle Georgiou, MD

    Colonoscopy…no way, no how, don’t want it, don’t need it. I’d rather have colon cancer. I don’t have any risk factors anyway. Can’t I have a root canal instead?

    These are the thoughts that swirled through my head starting at age 49 as I anticipated turning 50 and hitting the magic moment for this right of passage.

    But, several months ago, the resistance disappeared. I made the appointment in March and didn’t think about it again until I had to start the prep at 4 pm on the day before my procedure. Drinking 64 oz of Crystal Light with Miralax and 10 ounces of magnesium citrate made me feel like a bloatedwhale. I was stuck in a bathroom, chilled from the cold liquid, and could only tolerate wearing grey flannel sweats. (more…)


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    Culture Change is Here: People are Price-Shopping for their Health Care

    Jeanne Pinder

    Culture change is here.

    People are upset about rising health care prices and rising out-of-pocket expenses.

    In fact, they’re so upset that they’re acting like consumers, by shopping around for their health care, and by sharing information, and by complaining about their outrage. And that’s a good thing.

    When I founded clearhealthcosts.com a few years ago, I announced: “We’re bringing transparency to the health care marketplace by telling people what stuff costs.” (more…)

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    How to Make the Most of Your Doctor Visit

    jessie-gruman picI recently wrote about how common it is for those who work in and deliver health care – physicians, nurses, clinics and hospitals – to overestimate our knowledge about our bodies, our illnesses and how the health care system works. This overestimation of our familiarity happens with even the most seemingly simple and straightforward aspects of care, such as: Who is the nurse practitioner? Where is Dr. X’s office? When is “soon”? Why are you recommending this test?

    To help people find good health care and make the most of it, CFAH has created a library of Be a Prepared Patient tips and resources including two videos. The two-minute video below shares tips for How to Make the Most of Your Doctor Visit by explaining how to effectively describe your symptoms in four key steps. Being prepared with this information will allow you and your doctor to discuss the best treatment for you, including next steps. (more…)

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    Why I Share My Story: Karen and Stage 4 Colon Cancer

    April 7th, 2007: It was about one month before my 32nd birthday. My son Ethan was 16 months old. My daughter Sydney had turned three in February. My husband and I had been married for eight years. On that day in an emergency room in New Jersey I was told, as a nurse stood next to me crying, “You have colon cancer, you have tumors all over your liver.”

    “Say that to me again. Say to me you have colon cancer,” I asked.

    The emergency room doctor looking very sad and strikingly helpless said, “You have colon cancer.”

    I asked, “And I have tumors all over my liver?”

    “Yes,” he replied. With tears streaming down my face, I repeated, “Say that part again too. Tell me I have tumors all over my liver.”

    He did as I asked.

    The nurse touched my shoulder, whispering as she wiped her tears away, “I am so sorry.” (more…)

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    Normal Care Hours Don’t Work for Workers With Chronic Conditions

    jessie-gruman picIt looks like an airport lounge without the rolling suitcases. There are about 20 of us cancer survivor-types fiddling with our phones or reading the newspaper. A few of us are sipping delicious contrast fluid in preparation for a scan, but most of us are waiting to meet with our oncologists for follow-up or monitoring visits. All of us are between the ages of 20 and 70 and all of us are dressed for success – or at least for our jobs.

    What’s wrong with this picture? Why are employed adults spending a busy Wednesday morning waiting (and waiting) to visit our oncologists when we should be working?

    We are there because our clinicians and all the services of this comprehensive cancer center operate only during standard business hours, which is also when we are usually working. This means that something’s gotta give if the growing number of us cancer survivors are to attend to the chronic conditions caused by our treatment and be monitored for recurrences. In the meantime, what’s gotta give is us, our employers and our paychecks. (more…)


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    What If Health Engagement Was a System-Wide Requirement?

    Cyndy NayerThe conversation in health care blogs, C-Suites, and peer-reviewed articles is highlighted with “health engagement,” as though this is a new rubric. It’s been defined as aligned commitment toward a health goal that is set by someone or some entity.  Without engagement, there is no improved health.

    But the weight of engagement appears to be shouldered by the patient, who is portrayed as derelict in commitment, follow-through, or even literacy in the attainment of goals set by a system in which he or she is not a valued contributor. (more…)

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    Where Fashion and Health Intersect

    Anita-Dolce-VitaPeople often look perplexed when I mention that I am a Clinical Research Nurse by day and a fashion blogger by night.  Some find it peculiar, if not interesting, that I am passionate about and committed to two fields that most people consider completely unrelated. However, fashion and health care do intersect, and at this intersection exists opportunities to improve health and wellness.

    Studies have revealed that patients judge their health care providers based on the way their providers dress. It is not incredibly surprising that patients have greater trust and confidence in providers who are neat and professional in appearance, with preference given to starched white lab coats, business attire (e.g., neckties and suit jackets), and scrubs. So, what does this mean for providers and patients with respect to health and wellness? Well, the provider’s style of dress can impact the provider’s credibility and patient mistrust could lead to poor treatment adherence and low patient self-disclosure.  (more…)

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    Health Information Technology: Closing the Gap or Exacerbating Health Disparities in Underserved Communities?

    Megan DouglasHealth disparities are avoidable inequalities in health between two groups of people. They are often associated with social, economic, and/or environmental disadvantage. In the United States, health disparities are persistent, especially in poor, rural, and minority communities. Maternal and child health is a prime example, with infant mortality rates experienced by African Americans in the U.S. more than double those experienced by Caucasians. The Transdisciplinary Collaborative Center (TCC) for Health Disparities Research at the Morehouse School of Medicine (MSM) in Atlanta, Georgia, has been funded by the National Institute on Minority Health and Health Disparities (NIMHD) to tackle health disparities through four distinct initiatives using a collaborative approach and including community participation, with the ultimate goal of informing and influencing policy on these issues. (more…)

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