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Posts from the ‘e-patient’ Category

Let Patients Help: A New Book Authored by e-Patient Dave deBronkart

I was very glad to see the new book authored by e-Patient Dave deBronkart, whose thoughts I describe to medical students as a part of the official curriculum at Semmelweis Medical School, just became available.

Medical professionals must let patients help and become equal partners in the treatment! A must-read book!

Concise reasons, tips & methods for making patient engagement effective.
Third book by e-Patient Dave, cancer beater, blogger, internationally known keynote speaker and advocate for patient engagement; co-founder and past co-chair of the Society for Participatory Medicine. Profile: http://www.ePatientDave.com/about-dave

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A song by 17-year-old osteosarcoma patient

This is a very moving story about a 17 year-old osteosarcoma patient, Zach Sobiech, who wrote a song to say goodbye to his friends and family.

Lakeland, Minnesota native Zach Sobiech has advanced-stage osteosarcoma (bone cancer), with no known remaining treatment options.

“Facing months to live, 17-year-old Zach is turning to music,” according to the notes accompanying this YouTube video, “writing and performing songs as a way to say goodbye to his friends and family”.

Dealing with Patients on Facebook: Key Issue!

In my course in which I also describe what doctors should do when patients add them as friends on Facebook, we cover topics that are related to the everyday lives of physicians from the digital perspective. A few days ago, Joel Topf, nephrologist, told me on Twitter that he used my method when a patient added him on Facebook:

If the profile is personal, I reject the request and send a private message to the patients explaining why I did that: this is a personal account, while our relationship is professional. They always understand and accept my decision.

Then I asked Joel whether it worked out well.

 

My method is based on purely natural communication and transparent reasoning. This is why it works. 

 

A Brain Cancer and Its Open Data: The Cure Through Crowdsourcing

Salvatora Laconesi is an Italian man who recently found out he has brain cancer. Being a good coder, he cracked the code of his medical records and made the data open source so then anyone can analyze it (researchers, medical professionals, artists, etc.). This is the approach ePatient Dave regularly talks about: Let Patients Help!

Here is what happened to him:

  • I have a brain cancer.
  • I went to get my digital medical records.
  • Sadly they were in a closed, proprietary format.
  • I cracked them.
  • Shared them with everyone.
  • 2 of them already replied.
  • Grab the information about my disease, if you want, and give me a CURE: create a video, an artwork, a map, a text, a poem, a game, or try to find a solution for my health problem.
  • This is a CURE. This is my OPEN SOURCE CURE.

Give me my DaM data: Music Video

E-patient Dave became quite famous after his performance “Give me my damn data” last year. Now here is a music video covering the same issue but with The American College of Medical Informatimusicology featuring Todd Park, US Chief Technology Officer.

How Patients Learn in the Digital Age: Infographic

Here is a great infographic to browse on a Saturday morning:

DiaLog: Diabetes Tracking App

I just got an e-mail from the creators of the DiaLog app that was designed for diabetes users for tracking their condition.

Are you trying to get into the habit of Diabetes tracking? Are you bored from using the dated Diabetes tracking tools?

DiaLog with Master Wu is here to help. Master Wu will guide you with this app to get into the habit of daily Diabetes tracking.

Data in Diabetes

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.

The Social MEDia Course: Revolution in Medical Education NOW!

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).

When the Patient Designs Infographics

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!

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