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Category Archives: Story
ePatient Sketch
A lot of things go into being an ePatient, but through working on helping more patients transition into ePatients, I have come to realize it is not just the individual that creates the ePatient, but an ePatient team. It is the individual that must digest all the information as his own; however, the empowerment can just as much come from the support group of physicians and caretakers (family, friends, etc.) that give this individual the motivation to seek empowerment and to claim empowerment as his own.
Live tweeting and Surgery
http://www.sbnation.com/lookit/2013/10/24/5024682/video-hospital-live-tweets-acl-surgery
In October of 2013, Memorial Hermann Hospital continued to remain at the front of the lines of technology, not by using some sort of new tool or technique, but by live tweeting the knee surgery of an unnamed teen female athlete who injured her ACL playing intramural football. The livetweet session was fairly vague as to her identity, but that girl was actually a Rice student, injured in a powderpuff game!
Using every social media outlet that they could, the doctors on the case showed off their work — across Twitter using #MHknee with both descriptions and photos, and on Vine and YouTube as well. Now there is, at the link at the top, a 6 second video summary of a standard ACL surgery done by the head physician for the Houston Rockets and the Houston Texans. (Warning- it’s fairly graphic!)
This is not the first time that Memorial Hermann has graced the internet with graphic representations of surgery over social media. In May of 2012, surgeons there documented a 21 year old female’s brain surgery, telling twitter all about the angioma in her right temporal lobe, including showing MRIs of her brain, and describing it’s removal. Concurrent posts to YouTube documented her journey of the day, including explanations of the procedures and tools used, and even video of the drilling into and removing a portion of the skull. Photos even went up on the site more known for wedding dresses and craft instructions, Pinterest.
Memorial Hermann was the first hospital to attempt such a presentation of the real time sequence of events with a live tweeting (text only, in that case) of open heart surgery a few months before the brain surgery, and they continue to lead the way in keeping the public in the know about such drastic surgeries.
Other medical institutions have followed the way, and just 6 days ago surgeons at Toronto’s Sunnybrook Health Sciences Centre livetweet a bypass, becoming the first in Canada to do so.
“This is an engaging way of keeping the public informed,” surgeon Dr. Gideon Cohen was quoted as saying in a post surgery interview with CBC News. But the same article quoted the blog of Summer McGee, “a professor of public health ethics and policy at the University of New Haven in West Haven,” Connecticut. McGee poses the question of what might occur if a live tweeted surgery like this might come to an unfortunate end– and what ethical issues might come to light in such an event.
In the era of social media, it is certainly something to think about. While more and more people might have access to and be interested in an event like this, and it can be a great PR boost for a hospital amidst a dozen other hospitals like Hermann, it certainly has the potential to go wrong. McGee recommends that “Limiting the PR elements and focusing on the educational elements of this practice is likely to help ensure the practice doesn’t get out of hand and harm patients or their relationships with physicians and health systems.” While livetweeting may be fascinating for the audience, the patients must always come first.
Team Mara
She loved bowling, softball, and fishing. She worked at a local bank. “I got this” was her motto. But 21-year old Mara Krysiak of Superior, Wisconsin, was born with hypertrophic cardiomyopathy, a “genetic mutation in which the heart muscle becomes abnormally thick” and battled for her life each day as she got older and was unable to participate in sports or daily activities.
She had her first heart transplant on Nov. 24, 2012. But almost a full year after her transplant, Mara’s new heart failed. That’s when her doctors turned to the SynCardia Total Artificial Heart implant. According to the company’s website, it’s intended to sustain life until a suitable donor heart is available. She became the second person to receive an artificial heart implant at Children’s Hospital of Wisconsin in Milwaukee on Nov. 11. However, a few months later, she developed a blood infection that led to complications and excessive fluid buildup in her lungs. On January 13, 2014, Mara passed away.
But what is amazing the is incredible support Mara and her family have received not just from her local community, but the 939 members of her Facebook group “Team Mara” throughout Mara’s time in treatment. Over the years, family members and friends filled the page with photos, videos, and photos of Mara living life and remaining smiling and radiant despite her condition. The group was also a platform to encourage its members to become organ donors and spread awareness about heart disease. Yet, the most touching are the messages from the significant amount of members who have never even met her.
“Thanks for educating me on being a registered donor instead of just checking it on my drivers license. Received my certificate today!!! I never met Mara, but WOW what love there is for her. She was very important to a friend of mine and that is how I became part of Team Mara.”
Scroll down the page and from her passing you will not only find messages of condolence but you will also see dozens of photos people uploaded of their certificate of organ donation registration in memory of Mara. Her life ended prematurely but her story will save many lives through the gift of organ donation from Mara’s supporters.
This is just another example of how social and collaborative media can make an impact and even inspire change in ways that traditional health media have been less effective. It also demonstrates the power of a story, in this case, a real-life story that was unfolding as time went on. Many of the people who joined this Facebook group probably have never met Mara in their lives but who were changed by following Mara’s life over the past few years. For Mara’s family, they hope this kind of publicity will inspire their followers to not just be passive, but to take action by donating to support research and becoming registered organ donors for the future of others who need a healthy heart.
How can we use inspirations like “Team Mara” to educate, impact, and encourage media consumers to take a more active role about health issues?
Transmedia Hackathon @ OEDK!
Earlier this week the Medical Futures Lab parachuted into Matthew Wettergreen’s class in the Oshman Engineering Design Kitchen at Rice University to run a two-day transmedia hackathon inside a summer engineering design course. Our goal: explore how the visual and narrative representation of problems shapes our ability to find solutions to those problems. Students engaged in a series of experiments using different communication and representational tools to develop their understanding of how the form of representation for a problem shapes the way we analyze and solve that problem. By exploring with different tools, students saw different dimensions of their problems, which included doctor-patient communication about a variety of complex subjects, including risks & benefits of genome sequencing, end-of-life conversations, and talking about socially uncomfortable topics.
Peter Killoran started things off with a narrative medicine + EMR re-design warm-up exercise, routed through two classics: IOM’s To Err is Human (1999) and Edward Tufte’s Visual Display of Quantitative Information (1992). We spent a lot of time talking about the role of storytelling in design, and then these incredible students went about prototyping (in about 90 minutes) consumer-facing EHRs that could also be useful to clinicians. The beauty of the non-expert approach was definitely on display, as these young creatives weren’t hampered by all the restrictive protocol (HIPPA, can you hear me?) and instead could concentrate on the core message: get the patient’s story into the EMR.
Later in the day, Allison Hunter ran the group through some eye-opening visual arts exercises in flow-charts and mood-boards. The next morning, I launched the group into a session on doing things with words. We did exercises on metaphor, simile, and analogy, both textual and visual. We also worked on point-of-view as a critical dimension of design. After a final session on storyboarding with Allison, students were tasked with a problem to solve using a set of tools (written, visual, moving image, audio), and at the end of the hackathon they presented their experience of experimenting and identifying which tool best helped them develop a solution to the problem.
This was a laboratory designed to generate ideas and strategy for the Medical Media Arts Hub, and my big take-homes included affirmation (again) that collaboration across difference is truly critical to engineering design, to medical problem-solving, and to tackling the wicked problems of the world; that art+engineering+storytelling is the answer to many problems; and that listening to future users’ needs is everything. Mind-expanding experience, and fun to boot. Next time, we’re taking it public, so stay tuned – we’ll be seeking local “wicked problems” to tackle soon!