When I wanted to include digital literacy in the medical curriculum, I worked really hard to get a chance for a pilot at a medical school with over 240 years of history. Now it has been running for 5 years. I teach medical students about the use of social media and how to deal with e-patients. Therefore when I came across and read the book, Let Patients Help, by E-Patient Dave, I knew this is what I was looking for.
I think we should make this book a must-read book in every medical school. To fulfill this huge mission, we need people working at medical schools who can work their way to the top and add it to the curriculum school by school.
If you work at a medical school or know someone who could help us, please let me know!
It was time for the FDA to step up and represent the very loud voice of e-patients as well. The FDA Patient Network was just launched to educate patients and advocates about FDA; recruit patients and advocates to serve in meetings and to speak at FDA events; and ensure that patients and advocates can express their concerns about FDA decisions. It’s a good first step.
We are the Patient Network, a part of the FDA. We work to bring the unique perspective of patients, family members, caregivers, and patient advocates to the decision-making processes of the FDA. Through the Patient Network, you can learn more about FDA and how it works, provide input in decisions about new or current medical products, and talk with FDA experts about issues and concerns that are important to you.
E-Patient Dave deBronkart, the leader of the health 2.0 movement, published an essay under the title, How the e-patient community helped save my life. This is a must read for every medical professional just like his recently published book.
In April 2009 I found myself on the front page of the Boston Globe.1 A mere cancer patient, I’d written a blog post about my medical record. The Globe’s reaction—on page 1—was my first glimpse of a big question: how can a patient say anything about medicine that’s worthy of attention?
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
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”.
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.
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.
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.
Here is a great infographic to browse on a Saturday morning:
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.