Cinderblocks 2016: Bring on the Patients!


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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The Patient-Physician Experience Gap

Jane Sarasohn-Kahn

Today’s post first ran on Health Populi.

As patients continue to grow health consumer muscles, their ability to vote with their feet for health care services and products grows. That’s why it’s crucial for health care providers to understand how patients perceive their quality and service levels, explained in Patient Experience: It’s Time to Rethink the Consumer Healthcare Journey, a survey report from GE Healthcare Camden Group and Prophet, a brand and marketing consultancy.

The-Patient-Provider-Experience-Chasm-GE-Prophet-March-2016 (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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Doctors: It’s Not What You Say, But How You Say It

Val Jones, MD

Today’s post originally ran on Better Health on December 28, 2015.

Most physicians will be thrust into the role of patient or caregiver at some point during their careers. Unfortunately, it’s not until this occurs that many become fully aware of the finer points of excellent care and communication. Take for example, the simple act of reporting test results to a patient. We do this every day, but may not realize that how we frame the information is as important as the data themselves.

I came to realize this on a recent hospital visit when I was in the role of healthcare proxy for a loved one with heart disease. Not only did various physicians present information with different degrees of optimism, but individual doctors presented things differently on different days…depending on (I guess) how tired/hurried they were. (more…)

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Consumers Take Better Preventive Care of Pets Than Themselves, CIGNA Finds

Jane Sarasohn-Kahn

People Care Deeply About the Wellbeing of Their Pets Not So Much WellbeingThe post below first ran January 18 on Health Populi.

Nine in 10 pet owners know when their dog or cat is due for their shots. Eight in 10 women know the frequency with which they get manicures and pedicures. 80% of men know the mileage between old changes.

But only 50% of family health care decision makers know their blood pressure, and only 20% know their biometric numbers like cholesterol and BMI.

Americans are great at doing preventive care for their pets and automobiles; but not so much for their own bodies and health, finds the report CIGNA Preventive Care Research, a survey of 1,000 U.S. consumers between 25 and 75 years of age who have health insurance and are the health care decision makers for their families. The survey was conducted in September 2015. (more…)

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Please Don’t Cut Off My Pants

Meryl Bloomrosen

Patient involvement, patient empowerment, patient activation, and patient centered care are among the many popular phrases increasingly uttered within the health industry.  Some authors, writers, speakers, and bloggers have focused on analyzing  if and when certain terms and/or terminology (consumer versus patient versus person) are more (or less) appropriate or applicable to a particular situation.

Yes, there are signs of positive change. Innovations in care delivery and design along with new approaches to payment reform (from volume to value-based) are gaining momentum. The Food and Drug Administration’s (FDA) Patient Focused Drug Development (PFDD) Program and the FDA’s efforts to include patient perspectives in medical device development are admirable endeavors to increase patient involvement.  The Patient Centered Research Institute (PCORI) has focused its efforts on patient engagement and patient centered outcomes research. The Precision Medicine Initiative is moving forward to develop its 1 million plus cohort. (more…)

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  • December 23rd, 2015 Best of 2015: Filming in the ER: A Patient Perspective
    By Glenna Crooks
  • My Letter to Santa

    Lisa-Suennen-photoThe following post originally appeared on author Lisa Suennen’s blog Venture Valkyrie.

    Dear Santa,

    imagesI’m writing to you with my Christmas wish list. I realize that I am a little over the typical age limit for this activity, but I am pretty short so maybe I can still pass for a kid? I also know that, as a venture capitalist, I may automatically default to the “naughty list.” But I am an eternal optimist and I’m hoping that the social value inherent in investing in healthcare instead of video games and drones can help me put a few points on the Santa board.

    Here’s to hoping that my wishes will be fulfilled, For what it’s worth, I will be listening for Rudolph et al on Christmas Eve, cookies at the ready. I make really good cookies. Here’s my list, in no particular order:

    1. Great companies with rational valuations –I know it’s hoping for a lot, particularly the latter part, but hey, it never hurts to ask. (more…)

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    November Man of the Month: Pablo Graiver

    Pablo Graiver

    Photo credit: Edu Ferrer

    Pablo is the CEO and co-founder of TrialReach, a health tech startup focused on matching patients to clinical trials.

    You’ve spent your career in the startup world, and seem to be committed to life as an entrepreneur. What does that say about you?

    To want to start from the ground up and create something new, you have to be a little bit fearless. More importantly, you need to have an incredible amount of resilience. Anybody can have an idea but it takes resilience to drive that idea into something that can grow and to navigate all sorts of complications.

    You started TrialReach after helping to get Kayak off the ground in Europe. Do you find a lot of similarities between travel searching and trial searching? (more…)

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    A Patient at a Press Conference


    The following post originally ran on Gray Connections on September 6th.

    Earlier today (September 6, 2015) I gave this speech at the International Association for the Study of Lung Cancer (IASLC)  World Conference on Lung Cancer in Denver.  I’m pleased at the reception it received.

    I appreciate IASLC including me in this press conference. They’ve been responsive to lung cancer patients and advocates, and have included the patient voice in several conferences. Patients and advocates participated in the planning process for this World Conference on Lung Cancer, as demonstrated by the number of patient and advocate presentation on the program. This is a first among major oncology conferences, and a step forward for engaged patients.

    PRC 1As the slide says, I’m alive thanks to research, precision medicine, and other patients. My lung cancer journey is a good example of the importance of research, hope, and engaged patients and advocates. (more…)

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    When In Doubt, Ask A Family Member

    Val Jones, MD

    The post below ran on September 9 on Better Health.

    I learned a valuable lesson recently about how difficult it can be to make the correct diagnosis when you see a patient for a very short period of time. In the acute rehab setting I admit patients who are recovering from severe, life-altering brain events such as strokes, head injuries, and complex medical illnesses. It is challenging to know what these patients’ usual mental function was prior to their injuries, and so I rely on my knowledge of neuroanatomy, infectious disease, and pharmacology to guide my work up. However, I have learned that asking the patient’s family members about what they were like (in their healthier state) is extremely important as well. Personality quirks, likes and dislikes, and psychiatric history all offer clues to ongoing behavioral challenges and mental status changes.

    This fact was never clearer than when I met an elderly gentleman with a new stroke. He was extremely drowsy, non-participatory, and was not oriented to anything but his name. (more…)

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    When Great Healthcare Is Served With A Large Helping Of Unnecessary Mental Anguish

    Val Jones, MD

    Better Health first ran the post below on August 5.

    I watched helplessly as a dear friend went through the emotional meat grinder of a new cancer diagnosis. Her  husband was found to have melanoma on a recent skin biopsy, and she knew that this was a dangerous disease. Because she is exceptionally intelligent and diligent, she set out to optimize his outcome with good information and the best care possible. Without much help from me, she located the finest specialists for her husband, and ultimately he received appropriate and state-of-the-art treatment. But along with his excellent care came substantial (and avoidable) emotional turmoil. The art of medicine was abandoned as the science marched on.

    First came the pathology report, detailed and nuanced, but largely uninterpretable for the lay person. She received a copy of it at her request, but without any attempt at translation by her physician. In his view, she shouldn’t be looking at it at all, since it was up to him to decide next steps. She brought the report to me, wondering if I could make heads or tails out of it. Although I am not trained in pathology, I did know enough to be able to translate it, line-by-line, into normal speak. This was of great comfort to her as the ambiguity of prognosis (rather than certainty of metastasis and or mortality, etc.) was clearly outlined for the trained eye. (more…)

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    Harnessing Big Data – MedTech Innovation that Segments Patients According to Need

    m shepherdA recent interview with Battelle researchers David Giles and Stephanie Kute proves that big data is here to stay. An incredible amount of innovation is happening in the world of medical devices as technology improves, growing increasingly smarter and recording more information about its users. This innovation raises a few new questions: how can we utilize new technology to be most effective, and how can we ensure that private information is kept secure?

    Stephanie Kute, platform lead for the Battelle analytics and health research team, spoke to MassDevice about Battelle’s strategies in the rapidly-changing world of big data. “Previously we had a clinical device development group and we had an advanced analytics group, and those were separate groups that would communicate occasionally,” Kute said. “But now, we’ve found, with the changes to big data, the availability of it and what’s being required by the market, it makes more sense to put us together. We now have a formal relationship within the structure of the organization, and medical devices and advanced analytics are coupled. The engineers need to be coupled with the data scientists, the mathematicians, and the statisticians in order to develop innovative products going forward.” (more…)

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    What We Want Our Nurse to Know

    chelsyI’ve worn a few different hats in the hospital world. I’ve been the scared patient, the frustrated patient in pain in the waiting room, the family member sleeping next to the patient for weeks in the ICU, the visitor who refuses to follow the visiting hours, but I’ve never been the nurse, the doctor, the receptionist, or the orderly. I’ve cried while my nurses held my hand, I’ve yelled at nurses when I’m frustrated, I’ve been given shampoo and access to a shower when I was sleeping next to a hospital bed for months without any belongings, I’ve had procedures and information explained to me when I couldn’t understand what the doctor was saying to me, I’ve been the friend watching my peers go through the rigors of nursing school, I’ve judged nurses for not being warm and comforting, and I’ve seen tears of happiness swell under their eyelids when things get better.

    I have so many experiences as a patient or the guest of a patient, but I’ve never been in the shoes of my nurses. I don’t know what it’s like to see people die despite my efforts, to work on my feet for 14 hours, or to be yelled at by a crying family member and stay calm and understanding. There are so many things I wish I could go back and say to the nurses who have changed things for me and my loved ones during these experiences that I wish I had thought to say back then. As patients it’s hard to understand a perspective outside of our own, but here are some things we want you, our nurses, to know. (more…)

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    Over-Reliance on Tests: Why Physicians Must Learn to Trust Themselves & Their Patients

    Val Jones, MD

    The post below ran yesterday on Better Health.

    I met my newly admitted patient in the quiet of his private room. He was frail, elderly, and coughing up gobs of green phlegm. His nasal cannula had stepped its way across his cheek during his paroxsysms and was pointed at his right eye. Although the room was uncomfortably warm, he was shivering and asking for more blankets. I could hear his chest rattling across the room.

    The young hospitalist dutifully ordered a chest X-Ray (which showed nothing of particular interest) and reported to me that the patient was fine as he was afebrile and his radiology studies were unremarkable. He would stop by and check in on him in the morning.

    I shook my head in wonderment. One look at this man and you could tell he was teetering on the verge of sepsis, with a dangerous and rather nasty pneumonia on physical exam, complicated by dehydration. I started antibiotics at once, oxygen via face mask, IV fluids and drew labs to follow his white count and renal function. He perked up nicely as we averted catastrophe overnight. By the time the hospitalist arrived the next day, the patient was looking significantly better. The hospitalist left a note in the EMR about a chest cold and zipped off to see his other new consults. (more…)

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