Cinderblocks 2016: Bring on the Patients!

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Regina Holliday

The irrepressible Regina Holliday is doing it again. This week will be the third time the mighty patient advocate, author and founder of the Walking Gallery of Healthcare is holding the “Cinderblocks” conference, a patient-led art and medical forum which has become sort of a revival meeting for patient advocates. Among headliner presenters is our friend and colleague, patient engagement advocate and kidney cancer survivor e-Patient Dave deBronkart. But the force behind the conference is Regina. (Read a recent USA Today profile of her work here.)

I remember attending the very first Cinderblocks conference in Kansas City, Missouri, and finally getting a chance to know Regina, whom I’d spotted during a previous conference in her customary venue – bellied up to her easel, clad in a smock, paints splayed in front of her. Labeled “Little Miss Type-A personality” by one of the doctors who treated her late husband, she proudly sports a big letter “A” she painted on the back of her own signature red jacket, as a key reminder of her own health care journey. For the uninitiated among us, Regina leverages her passion for storytelling and artistic talents to paint wildly expressive paintings on the back of business jackets.

walking-gallery-300x219The coveted jackets are worn at medical conferences and other events, where they’re guaranteed to prompt conversations. 44 artists have since participated, but most of the jackets (about 350 out of more than 400) were painted by Regina herself. She continues to churn out jackets, in between delivering keynote speeches, volunteering in her community, raising funds to buy and build a home for the Walking Gallery in her hometown, and raising two boys on her own.

Launched into patient advocacy by the death of her beloved husband Frederick from kidney cancer, and struggling to get him good care as he was moved from facility to facility, Regina fought to get his medical records. She was told it would take 21 days and she would have to pay 73 cents per page (there were 162 pages).  “73 Cents” became the name of the mural she painted on the side of a garage in Washington, DC, depicting the full array of both shameless and heroic acts by the medical team that surrounded her husband in his final days. The Walking Gallery became an extension of this work.

The Cinderblocks conference will always be extra special to me and Diane Stollenwerk. It’s there we met, in 2012, cabbing together with e-Patient Dave from the airport to the hotel. We reveled in the energy, enthusiasm and brainstorming at this aptly named “unconference”. And it was on the very last day, departing for home, that  Diane and I first sketched out the idea for what would become PVI on the back of a cocktail napkin.

This year’s Cinderblocks is in Grantsville, MD. Here’s how to get tickets, and here’s the full agenda. Through the miracle of technology, PVI will be able to visit with our friends virtually.

We’re looking forward to checking in. Patient advocacy is often lonely work; these regular infusions of energy, optimism, community and creativity help keep us going. You can be sure Cinderblocks, and the community built by Regina Holliday, will bring it, in spades.

By . This post originally appeared in Patient Voice Institute.

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Getting Ready for Mother’s Day

Disruptive Women in Health Care prepares for this upcoming Mother’s Day by revisiting its successful series on Maternal Health and Reproductive Justice.

We know and appreciate that not all moms are birth mothers–sending  love and warm wishes to all moms–be they biologic or otherwise.

And acknowledging the memory of mothers no longer with us.

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Rooming In: The Newest Birthing Controversy

ec_crop (1)Hot on the heels of media stories about the importance of screening for post-partum depression, a debate about whether to have newborns stay in hospital rooms with their moms vs. providing nursery care for the infants is emerging. It’s an interesting topic, but binary responses to the debate do little to recognize that “one size fits all” solutions may not be sound.

The benefits of rooming in instead of providing nursery care are well known. Both research-based and anecdotal reports suggest that rooming in correlates to a lower incidence of post-partum depression in new mothers and reduced breastfeeding problems for both mother and baby. Babies also appear to be less subject to jaundice. It has also been observed that rooming-in babies seem more content and cry less while mothers bond better with their babies and feel more competent in caring for them when they return home. Proponents argue as well that rooming in offering mothers more rest time because they are not anxious about what’s going on in the nursery. (more…)

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Latest Survey Findings from the Society for Participatory Medicine

A new national survey from the Society for Participatory Medicine found that patients overwhelmingly believe a partnership with their health care provider improves their overall health. The survey also found that people see benefits in monitoring and sharing their health information between visits. The results can be seen in the infographic below (also available for download here). (more…)

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Dying to Get an Education

Meryl Bloomrosen

Public policy and public health efforts are underway to help assure that people can be healthy where they live, work, and play.  As part of providing education, schools are supposed to protect the health and safety of students.   Various government and non-government organizations (NGOs) offer resources, toolkits and evidence-based resources to help school districts, schools, and school personnel deal with health emergencies, such as life threatening conditions like asthma.  Guidelines indicate that schools should have:  a policy or rule that allows students to carry and use their own asthma medicines; written emergency plan(s) for teachers and staff to follow to take care of a student who has an asthma attack; and standing orders and quick-relief medicines for students’ use.[1] [2]

In the last few days, I read with admiration about middle and high school students setting aside any personal trepidation and potential disciplinary action to help fellow classmates who were having asthma attacks. (more…)

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Confronting Scandalous Physician Behavior: The Annals Of Internal Medicine Takes The First Step

Val Jones, MD

This post first appeared on Better Health.

If you have not read the latest essay and editorial about scandalous physician behavior published in the Annals of Internal Medicine (AIM), you must do so now. They describe horrific racist and sexist remarks made about patients by senior male physicians in front of their young peers. The physicians-in-training are scarred by the experience, partially because the behavior itself was so disgusting, but also because they felt powerless to stop it.

It is important for the medical community to come together over the sad reality that there are still some physicians and surgeons out there who are wildly inappropriate in their patient care. In my lifetime I have seen a noticeable decrease in misogyny and behaviors of the sort described in the Annals essay. I have written about racism in the Ob/Gyn arena on my blog previously (note that the perpetrators of those scandalous acts were women – so both genders are guilty). But there is one story that I always believed was too vile to tell. Not on this blog, and probably not anywhere. I will speak out now because the editors at AIM have opened the conversation. (more…)

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Newly Minted Doctors Begin Their First Jobs In July: Should You Be Afraid?

Val Jones, MD

Today’s post first ran on Better Health on July 4.

The short answer, in my opinion, is yes.

The long answer is slightly more nuanced.  As it turns out, studies suggest that one’s relative risk of death is increased in teaching hospitals by about 4-12% in July. That likely represents a small, but significant uptick in avoidable errors. It has been very difficult to quantify and document error rates related to inexperience. Intuitively we all know that professionals get better at what they do with time and practice… but how bad are doctors when they start out? Probably not equally so… and just as time is the best teacher, it is also the best weeder. Young doctors with book smarts but no clinical acumen may drop out of clinical medicine after a short course of doctoring. But before they do, they may take care of you or your loved ones.

It has been argued that young trainees “don’t practice in a vacuum” but are monitored by senior physicians, pharmacists, and nurses and therefore errors are unlikely. While I agree that this oversight is necessary and worthwhile, it is ultimately insufficient. Let me provide an illustrative example. (more…)

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Data Independence Day Series

my dataOur posts this week will all focus on health data and individuals right to access it in honor of “Data Independence Day”. Data Independence Day initiated by Former National Health IT Coordinator Dr. Farzad Mostashari (you will hear more from him later this week) is a movement that will come to a head on July 4 when the Get My Health Data effort launches. The movement is focused on consumers demanding electronic access to their health information. It began when patient advocates responded to the recently loosened rules governing the “meaningful use” EHR Incentive Program. In April, CMS announced it was changing the provision that requires eligible providers to prove that five percent of EHR users have viewed, downloaded, or transmitted information contained in their patient portal. The change, eligible providers now only need to prove that “equal to or greater than 1” patient has interacted with their record. You can see why patient advocates were outraged. (more…)

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“What If 1 Million Americans Asked for Medical Records on the Same Day?”

Jane Sarasohn-Kahn

farzadThe following post ran yesterday on Health Populi, see the original post here.

This was not a theoretical question Dr. Farzad Mostashari, former head of the Office of the National Coordinator of Health IT in the Department of Health and Human Services, asked yesterday at the closing keynote of Day 1 of the Patient Engagement Forum.

Dr. Mostashari issued a challenged to the community of mischief-makers in health/tech patient advocacy: tell everyone you know to contact their doctors — by phone, email, patient portal, or in-person, on one designated day which he called a “Day of Action.”

Health IT journalist Neil Versel (disclosure: also a long-time friend in the field) covered this news story here in MedCity News.

In the meantime, here is my (abridged) transcript of Dr. M’s talk, thanks to my note-taking skills. My own words are between carrots <> to provide additional context. (more…)

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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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  • 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…)

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    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…)

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    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…)

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