As the HIMSS15 dust settles in Chicago, the thoughts of attendees like myself who may have been overwhelmed by the sheer size and utter busy-ness of the conference are beginning to settle into some interesting thoughts about the business of health care, the roles of mHealth, patient portals, and data ownership. This is the first in a series of two articles about open access to data.
Patient interoperability was a prime concern at HIMSS15, but when Dr. Karen DeSantis, National Coordinator for Health Information Technology, discussed with the press the need for physicians to have health data (via EHRs) when they need it, where they need it, in a form that’s compatible with their systems, and that isn’t exorbitantly expensive, the elephant in the room was: the patient.
The medical data, after all, comes from the patient. Why should Patient A have to jump through red-tape hoops to access data, when Patient B can go down to her hospital and have the record copied (the costs for this vary by state)? And why should either Patient A or B struggle just to get the data when Patient C can sign into a patient portal and get that information in a few clicks?
According to the National Association for Trusted Exchange, giving patients access to their data can make it easier for them to remember their health histories when filling out forms (have you signed a child up for camp lately? I certainly depend on my patient portal for that), or helping to care for family members.
Enter The Walking Gallery or: What’s the deal with these painted jackets?
It’s hard not to notice a work of art on the back of someone’s suit jacket in a sea of black and gray business attire. You can see them from across the room. Eventually, I ended up sitting behind Ken Congdon, who was wearing one of these jackets, and who I now know as a member of The Walking Gallery.
I tweeted @ReginaHolliday the very next morning. I simply had to hear her story. Holliday described her struggles with medical errors and access to the medical records of her husband, Fred, who was battling cancer.
As a patient advocate, speaker, author of a recently published memoir, and artist, Holliday’s mission is that no loved one ever have to discover medical errors too late – it seems that she won't rest until patients have open access to their data.
Holliday told nuviun at HIMSS15 about her husband, Fred Holliday, who became suddenly ill in 2009. He was hospitalized for 11 weeks in 5 different facilities. They had no access to his medical record and felt as though they were begging for information that, in fact, belonged to them.
Fred died during the 12th week. And, on the sixth day after her husband's death, Holliday picked up her paintbrush and began to paint through her grief.
Art is often used as therapy, and Holliday's mural, titled Seventy-Three Cents, was therapeutic. It was an act of love – a memorial. But, it also was a political statement that turned more than a few heads. Then, in a residential area near the Capitol in Washington DC, the mural became something bigger.
So big that the movement has grown legs. Over 660 of them in fact. Instead of painting on bricks and mortar, these days Holliday is painting the backs of sports coats and blazers, like the one I saw on the back of Ken Congdon.
Painting by Regina Holliday, photo by nuviun
The Blue Button for patient access
I had the pleasure of speaking with Regina again last week about the release of a patient education video by the National Association for Trusted Exchange (NATE) and Michigan Health Information Network Shared Services (MiHIN).
The video teaches consumers about their rights to access their information, and gives examples of times in a consumer’s life when having access to health information could be important.
Aaron Seib, the CEO of NATE, explains:
Using our smart devices with a Blue Button-enabled application enables any of us to receive and share our personal health records using the same secure methods used by doctors today. These Blue Button-enabled applications can help patients make sure their information is accurate, make it easier for you to share your information with all of your doctors, and generally have it available whenever and where ever you need it.
Holliday, as staunch advocate for patient data access, had watched the new Blue Button video, and told nuviun,
I was impressed that this time they tried to get people who seemed to be normal, it wasn’t as glossy and packaged as things they’d done in the past.
“Blue Button is a great concept,” according to Holliday, “but it’s a data dump.” Blue Button users get all the data from every encounter at every medical facility and pharmacy they’ve ever been to – all downloaded to any device and available when they need it. But, it’s a lot of information.
According to Holliday,
The only way to make data equity work is to make them put the patient in charge. Blue Button works better for that than a traditional portal does.
Look for more about my conversations with Holliday and this issue of open access in the second part of this series.
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.