A passionate group of patient advocates, artists, and industry thought leaders gathered last week in Grantsville, Maryland for Regina Holliday's Cinderblocks2 conference.
Without a doubt, attaining quality healthcare for yourself or a family member can be an arduous process. Already, this morning alone, I’ve spent 30 minutes in phone-loop purgatory trying to make an urgent appointment for my daughter. It can be infuriating to try to deal with a loved one’s illness and to fight for care in systems that don’t seem to really support patients. But, she’s my daughter and I will advocate for her to the ends of the world.
At least my daughter realizes how important it is for her to take her medications. She’s beginning to look at the handful of pills we give her several times a day and notices when we make mistakes.
I wonder, though, what will happen when she grows up? Will she be able to advocate for herself when I’m gone? Will she care enough to ask for her health records? Who will track all her medications? How can I set her up for success?
We are lucky in so many ways, among them to have good medical insurance, multiple college degrees, and the will to fight. Many patients in the US and elsewhere are not as involved in their care, if they’ve found a way to access care at all.
Information is power
This past April, nuviun reported live from HIMSS15 as Dr. Karen DeSalvo, the National Coordinator for Health Information Technology and President Obama’s nominee for Assistant Secretary for Health in the Department of Health and Human Services, discussed the issues of interoperability—and information blocking. DeSalvo told nuviun and other media representatives that, “there’s not a lot of quantified information right now,” and that the Office of the National Coordinator (ONC) wasn’t blowing any whistles in their information blocking report.
Someone, however, needs to blow that whistle.
nuviun has been on the bleeding edge of this trend since HIMSS15—a trend led by passionate healthcare givers, a handful of concerned politicians, and radical patients demanding free-flowing access to their health data. Last week, nuviun’s Jenn Lonzer was in a small mountain town with fire in its belly to find out more about the Walking Gallery and to hear from patients themselves about their health experiences.
Cinderblocks2, a patient-run medical conference, was held in Grantsville, Maryland. In Grantsville—a rural, mountain town with a population of 825—the fog hangs heavy, the sounds of rivers and creeks outweigh that of traffic noise, and there’s a faint smell of wood-burning stoves. But, during Cinderblocks2, this small town was anything but sleepy.
Regina Holliday, founder and tireless heart and soul of the patient movement (see this HIMSS15 article that addresses the question, what’s the deal with these painted jackets?), told conference attendants about the origin of the conference name, Cinderblocks2.
I grew up in [rural] Oklahoma, and Oklahoma is a poor state. When I was in fifth grade, our class got a lot of books donated. My teacher was so very grateful, but she didn’t have any bookshelves.
So, she called the local lumberyard and asked for cinderblocks and planks for bookshelves. The lumberyard owner said 'sure, but you have to come down here and get them.'
I think he thought she’d drive down, but she arranged to take the fifth grade class on a field trip. We walked to the lumberyard, and carried the cinderblocks and boards back to our school.
We built our own bookshelves, and we loved them.
Most of the passionate Cinderblocks2 attendees are members of The Walking Gallery, which Holliday describes as a gallery that walks with patient stories on their backs.
We are the Gallery that walks. We are the Patients that wear our stories on our backs. Soon we shall come to a city near you and create gallery space in moments. We won’t pound a single nail into the walls to hold the art. Dozens of people will walk into a space wearing business jackets or doctors' lab coats. That alone is not unusual. But these jackets will be works of art. Each one shall be painted with the story of a patient or an element of medical advocacy by me or another artist. These masterpieces will be worn on the backs of government employees, technology gurus, medical professionals, social media activists, CEOs of companies and artists. It shall be a great meeting of the minds.
Disassociated Patient Syndrome
According to Mark Scrimshire, a Cinderblocks2 presenter and thought leader currently on assignment with the US Department of Health and Human Services HHS and the Center for Medicare and Medicaid Services (CMS) as Entrepreneur-in-Residence, “we all suffer from DPS (Disassociated Patient Syndrome).”
Healthcare shouldn’t be something that happens to patients—it should be a partnership with patients. The patient stories so powerfully painted on The Walking Gallery jackets illustrate just how powerless patients and caregivers feel in the face of illness.
Patients aren’t disassociated because they are lazy. They are disassociated, according to the patient advocates at Cinderblocks2, because they aren’t given (and aren’t demanding) the power—the information—they need to make the best life choices. Scrimshire said,
Something like 66% of hospital CEOs say that no one is asking for electronic copies of their medical records.
Healthcare reform and data access are hot topics in the US right now—if you are in government, insurance, or manage a major healthcare institution. And patients, for the most part, aren't involved in these important conversations.
It’s hard to blow the proverbial whistle when there are layers upon layers of infrastructure, and no one knows whom to blame. If there’s to be progress here, it’s time to put blame aside and find a way to work together.
There’s no easy solution to any of this, but until patients start to speak up, asking for access to their medical records and becoming more active members on their healthcare teams, nothing will change.
The nuviun blog is intended to contribute to discussion and stimulate debate on important issues in global digital health. The views are solely those of the author.