As a physician and genomics researcher, I’m a man of data so I loved to see the approach of Dan Hon regarding type 2 diabetes and the data he acquired every day about himself which helped him get better.
He resolved to do something about it. Being a geek, he decided to measure and quantify the health factors (weight, body fat, activity, blood sugar) that contribute to diabetes. He’s lost 30 lbs since the new year, and has gotten pretty far into reversing his diabetes. He’s detailed his experience with various kinds of monitoring tools, and written a bit of a rant about what needs to be fixed in order to make this easy for anyone with a diabetes diagnosis to follow in his footsteps.
Social media is changing how medicine is practiced and healthcare is delivered. Patients, doctors, communication or even time management, everything is changing, except one thing: medical education. We need a revolution!
When a UK physician wanted to visit Hungary every week just to attend my university course focusing on social media and medicine, I decided it’s time to make this course global.
Today, The Social MEDia Course goes live with 16 flash Prezis, exciting tests, badges and achievements. Enjoy and have fun while learning! Medical students, physicians and even patients, everyone is welcome to take the course which is, of course, for free.
Here is a video about the course (and also a Prezi).
Katie McCurdy is an information-specialist so it wasn’t that surprising when she decided to design infographics showing and describing her medical history with plenty of details about her chronic condition (myasthenia gravis).
So for this week’s office visit, I have prepared a visual timeline, an infographic, if you will, that I will print and take with me to my visit. This timeline charts the progress of my Myasthenia Gravis since I was 13 – not only the hard facts like the medications I was taking at the time, but the way I *felt* during those times and the degree of weakness I was experiencing. Overlaid is the progression of my stomach problems over my lifetime, including the points in time when I took antibiotics. Laying these waveform-like patterns on top of one another reveals that often my MG and my stomach problems were involved in a dance of sorts, taking steep dives simultaneously.
If it’s well designed, it can be incredibly helpful to medical professionals. But what about her own doc?
The result was a more structured conversation that allowed me to communicate my story more efficiently while saving the doctor from having to listen to five minutes of my rambling.
Engagement, motivation and the real improvement of patient experience. Brilliant!
This is an absolutely timely topic and I’ve just recently come across pretty relevant news and articles focusing on whether patients should get access to source codes and data provided by their implantable devices. A few examples:
Hugo Campos has a small computer buried in his chest to help keep him alive. But he has no idea what it says about his faulty heart.
All the raw data it collects, especially any erratic rhythms it controls with shocks, goes directly to the manufacturer. And some of it later gets sent to his doctor.
Lawyer Karen Sandler’s heart condition means she needs a pacemaker-defibrillator to avoid sudden death, so she has one simple question: what software does it run?
Yet it turns out that it’s impossible for her to see and understand the technology that’s being installed into her own body and upon which her life depends. Regulatory authorities don’t see or review the software either.
In the first part of my series (I ask medical professionals and e-patients about how they use social media presented through practical examples and suggestions), a rheumatologist told us how he uses social media day by day. Now here is Kerri Morrone Sparling, one of the most famous diabetes bloggers in the world, with her own examples and habits. Kerri has been a major voice in the global diabetes community for years and she has amazing views on how social media can help diabetic patients. Enjoy!
What social media channels do you use in your work and for what purposes?
I use Facebook, Twitter, YouTube, and my own blog to connect with other patients who are living with diabetes. I use these channels daily, and even though it seems like a big commitment, there is so much empowerment to interacting with kindred spirits. My blog reaches a wide audience, and discussions about “real life diabetes” take place every day. There’s so much of an emotional health benefit to knowing you aren’t alone, and that there are others out there who “get it.”
What does your doctor think about social media? Does he use it?
My doctors know what I do, in the diabetes advocacy space, and they think it’s cool. My medical team understands that the 15 minutes I see them for every few months isn’t enough to sustain the physical and emotion health needs of some patients, and they encourage me to connect with my fellow patients. They love the ides of patients sharing their tricks for hiding their diabetes devices into their day-to-day lives. However, while my medical team has an overall social media presence, they do not have individualized representation.
What social media sites do you think point towards the future of healthcare?
I think that Twitter, and micro-blogging in general, is a powerful resource for patients, providers, and all health care professionals. Committing to blogging, or to running a specific community, can be a lot of work, but there’s something very satisfyingly simple about bite-sized bits of information that can be requested, received, and shared on micro-blogging platforms. Everyone’s lives are becoming busier and busier, so the simpler the sharing becomes, the more people can, and will, share.
What do you think about the curated Diabetes and Social Media selection on Webicina.com? For what reasons did you use it?
The diabetes online community is huge – from social networks like TuDiabetes to Twitter chats like #dsma to the hundreds of individual diabetes blogs … diabetes is well-represented in the social space. Sometimes this condition is so well-represented that it can be a little overwhelming for someone new to exploring the community – there’s so much that you don’t know where to jump in! I love the Webcina diabetes selections because it’s a whittled-down list of some of the best social sites for diabetes, and it gives you solid sites to help introduce someone to the community.
E-patient Dave deBronkart has been the most important and amazing voice of the e-patient movement for years now after surviving a kidney cancer years ago. When I asked him to comment on how medical students should become doctors who are aware of the e-patient movement, he sent me and my students this message.
He announced a few days ago that he has skin cancer again.
An odd consequence of speaking at medical conferences is that sometimes my face is displayed, real big, on monitors at the front of a room. That happened in November at the Aligning Forces for Quality (AF4Q) annual meeting in Washington.
At the end, Lisa Letourneau MD, MPH of Maine Quality Countsraced up, pointed to my jaw, and said “You should have that checked. I think it’s a basal cell.” (That’s the least serious type of skin cancer – see Wikipedia: “Basal-cell carcinoma (BCC) is the most common type of skin cancer. It rarely metastasizes or kills.”) A few days later I took the picture at left, and started watching.
I’ve decided to explore my options by doing what companies do when they’re shopping for a solution: they write a Request for Proposals, and let vendors reply. But in this case what I published isn’t cast in stone – I invite discussion and suggestions. And, significantly, I start with the context: partnership; participatory medicine -
I cannot wait to see how the industry and the healthcare system respond to such innovative approach.
Private hospitals in Rio de Janeiro, Brazil, have adopted a tech-savvy way to remind patients of their next appointment. By sending out SMS reminders, outpatients were able to keep their scheduled hospital visits and reduce the number of nonattendance. This mobile method was especially helpful and effective for patients needing ongoing treatment, for example with dengue fever.
Advanced medical devices are the tools that enable humans and robots to merge, perhaps signaling the dawn of a technological singularity. How close are we now? Take a tour and shop around — we’ve been cramming more intricate engineering into our bodies than you might think.
A Facebook campaign was launched a few weeks ago in order to urge Mattel to produce a bald version of its Barbie doll that will help children with cancer and others who have lost their hair due to illness cope with their conditions while playing. An excerpt from a recent article:
“We hope it gets the message out that being bald is beautiful and is no big deal. There’s no need to cover up,” she said.
Sypin’s own daughter is one of those children. The 12-year-old, named Kin Inich, lost her hair after chemotherapy.
Even though her daughter isn’t a huge Barbie fan, Sypin said she is excited about the idea.
“She said if they make one, she would totally get it,” Sypin said. “The first thing she said was if they make that doll, she would buy a bunch and take them to a children’s hospital and give them to children with cancer.”
It’s always good to see the trends about the growing number and importance of e-patients. Lee Rainie, director of the Pew Internet Project, presented this wonderful overview of the Project’s health findings at Providence St. Joseph Medical Center in Burbank, CA, on January 12.
Webicina’s new Sports Medicine and Social Media collection features relevant and quality social media resources from blogs and podcasts to community sites, Youtube and Twitter accounts focusing on this specialty.
Here is my top 10 social media selection for Sports Medicine:
And PeRSSonalized Sports Medicine, the simplest, free, customizable, multi-lingual medical information aggregator will let you follow these resources easily in a personalized way.
Feel free to share any of these resources and let us know if you think others should be added.
