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.

Subscribe to our newsletter

  • January 13th, 2015 Filming in the ER: A Policymaker Perspective
    By Glenna Crooks
  • January 12th, 2015 Filming in the ER: A Patient Perspective
    By Glenna Crooks
  • In Observance of Jessie Gruman

    jessie-gruman picOn July 14th, 2014 we lost a truly outstanding woman to her battle with a long time illness. Jessie Gruman was the president and founder of the Center for Advancing Health. A true patient advocate, she promoted not only patient engagement but the use of evidence-based medicine to support the adoption of healthy behavior.  In addition to her professional career, Gruman defined herself as a musician, avid reader of poetry and interested in foreign policy, the media and global health. She was a true disruptive (more…)

    Subscribe to our newsletter

    Patient Engagement: Here to Stay

    jessie-gruman picA few years after my treatment for Hodgkin’s lymphoma finally limped to its end in the mid-1970s, I looked back and was amazed at my casual approach to that devastating, life-changing diagnosis: At times I had been completely absorbed by it, every moment governed by the demands of the treatment and illness. At other times, well, the contingencies of life intervened, and I went dancing. Or to class. Or on vacation, with little regard for the risks, the medications and all my doctors’ directives.

    How could this be? Why would I take such a chance with my own health, my own (more…)

    Subscribe to our newsletter

    Saving Patients – One at a Time

    Some days I wonder how I wound up where I am today – doing what I do. Then certain days remind me, grab hold of me, and confirm, I was put here for this reason and THIS is my calling.

    As a medical malpractice paralegal, I had a clear interest in the medicine, as well as the law. Working on these files stirred a passion inside me. I knew I was onto something. With each case came a new type of medicine, illness, and surgical procedure I had to learn about. This was certainly filling my craving for knowledge. Then, the personal aspect of these cases kicked in. Each case was someone who died unnecessarily and left behind a traumatized family, or a brain damaged child with overwhelmed and distraught parents, and even people who were given a terminal diagnosis, as the result of a delay or mistaken diagnosis, and were looking for answers and justice. Each one unique – with its own story. Every story and every person – affecting me to my core. That is when I began to realize that beside the job I was doing for them at the firm, I needed to do more. (more…)

    Subscribe to our newsletter

    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…)

    Subscribe to our newsletter

    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…)

    Subscribe to our newsletter

  • October 7th, 2013 Today’s Government Shutdown: No Paradise
    By Glenna Crooks
  • The Consumer’s Ongoing Dilemma: Making Sense of Hospital Prices

    Trudy LiebermanRecently the Washington Post’s health policy columnist Sarah Kliff waded into the muddy waters of hospital disclosures. Kliff had heard that North Carolina Gov. Pat McCrory had signed legislation requiring the state’s hospitals to publish the rates for the services they’ve negotiated with insurance companies.

    That indeed would be a big step and builds on Medicare’s release earlier this year of what hospitals charge the government to treat Medicare beneficiaries. Surprise, surprise! The data show huge differences among hospitals even in the same city, a phenomenon well documented in the academic literature. (more…)

    Subscribe to our newsletter

    An Interview with Jessie Gruman: A patient, health care reformer, and the recipient of caregiving

    Jessie GrumanJessie Gruman is president and founder of the Center for Advancing Health (CFAH), a nonprofit, Washington-based policy organization which, since 1992, has been supported by foundations and individuals. CFAH works to support people’s engagement in their health and health care. Prior to founding CFAH, Gruman worked on these concerns in the private sector (AT&T), the public sector (National Cancer Institute) and the voluntary health sector (the national office of the American Cancer Society). DW talked with Gruman recently about her work and her perspectives on her role as a patient, health care reformer, and the recipient of caregiving. (more…)

    Subscribe to our newsletter

    Should Health Care be Considered a Right? A Look at the Role of Health Care in the Civil Rights Movement

    Danielle Brooks

    “We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights that among these are Life, Liberty and the pursuit of Happiness.”- United States Declaration of Independence, 1776

    This note was a promise that all men, yes, black men as well as white men, would be guaranteed to the inalienable rights of life liberty and the pursuit of happiness. “- I Have a Dream,” Dr. Martin Luther King, Jr., 1963

    The quotes listed above reference two of the most important moments in American history, moments which represent freedom: the signing of the Declaration of Independence and the Civil Rights movement nearly 200 years later. Yesterday, policy makers, civil rights leaders, and celebrities joined together alongside citizens to commemorate the 50th anniversary of the March on Washington for Jobs and Freedom where Martin Luther King Jr. made his iconic “I Have a Dream” speech. When thinking about the promise set forth in the Declaration of Independence and Dr. Kings’ call for America to fulfill that promise, I am always drawn back to the particular passages listed above and how both parties recognized the importance of life, liberty, and happiness for all individuals. Yet to attain these rights that both the Founding Fathers and Dr. King declared to be unalienable, having health and access to health care is a necessity. I recently sat down with Ruth Perot, CEO of the Summit Health Institute for Research and Education Inc., (SHIRE) a Washington D.C. – based organization that (more…)

    Subscribe to our newsletter

    Protecting Your Health: Access to Health Insurance and Medical Decision-Making in Divorces

    pictureGoing through a divorce can be unpleasant and stressful even under the most amicable situations.  The obvious issues that need to be dealt with, such as custody, spousal support, or child support, are rarely overlooked.  However, there are several areas of your health rights that are impacted by a divorce that are frequently not considered.  Knowing your rights and being prepared for the issues is the first step to taking control of and protecting your health.

    Health Insurance in Divorce

    With all the issues that arise during a separation, it is easy to forget about health insurance.  If at all possible, a spouse should try to get an agreement or court order requiring that the health insurance status quo be preserved – meaning that neither spouse nor the children’s health insurance will be affected during the pendency of the proceeding.


    Subscribe to our newsletter

    Anthony’s Story: Using a Collaborative Community to Increase Patient Compliance

    Whitney Bowman-Zatzkin

    Sitting with my morning coffee yesterday, I came across the same article many of us did about young Anthony Stokes, a teenager in Atlanta, who after being told that he had six months to live, was denied placement on a heart transplant list. His physician cited in a letter to the family, “Anthony is not a transplant candidate due to having a history of noncompliance.” This morning, I was relieved to read that the hospital notified the family that young Anthony was now placed on the transplant list, after a day of media coverage regarding their decision. (more…)

    Subscribe to our newsletter

    Our Campus, Our Rights: Students Rally Against Sexual Assault, Around Title IX

    Cate DominoForty years ago, Title IX of the Education Amendments of 1972 became law, ensuring that “no person in the United States shall, on the basis of sex, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under any education program or activity receiving Federal financial assistance.”

    Twenty-two years ago, Nancy Gibbs and Sylvester Monroe wrote an article in Time Magazine titled “When is it Rape?” The article, which included stories of violence at a number of American colleges (including my alma mater, the College of William & Mary), launched the phrase “date rape” into the lexicon. (more…)

    Subscribe to our newsletter