Roni Zeiger, ex-leader of Google Health, and Gilles Friedman, founder of ACOR, teamed up to create Smart Patients and giving a chance to cancer patients to take matters into their own hands.
Smart Patients is an online community where cancer patients and caregivers learn from each other about treatments, clinical trials, the latest science, and how it all fits into the context of their experience.
I recently blogged about László Rosta, PhD who published a video in which he tries to find an explanation for the disease of a young boy by offering the video for crowdsourcing. He sent me these particular questions:
- Does anybody have any experience with such a low-dose combinatorial drug therapy in sarcomas?
- What do they think about the proposed drugs – any antagonism in the combination?
- How could we get rid of the pulmonary metastases through a minimally invasive method (e.g. RF or MW ablation, HIFU, hyperthermia etc.)?
- Where and who would treat my son according to these principles?
- How could we get a single-patient trial approval for such a therapy?
László Rosta, PhD published a video in which he tries to find an explanation for the disease of a young boy by offering the video for crowdsourcing. He sent me this particular question:
Do you have any therapeutic ideas which might be curative for inoperable osteosarcoma of the pelvis with pulmonary metastases? Radiotherapy (72 Gy) and chemotherapy (EURAMOS-1 protocol) did not help.
I see more and more attempts at crowdsourcing which is not surprising as the increased use of social media platforms opened the way for communicating with like-minded people worldwide in no time. If you can share the video with oncologists you know, please do so.
There are more and more ways for crowdsourcing clinical questions, and the newest addition to the family of web tools and services is Figure 1, a photo sharing site for healthcare professionals. Registered physicians can share images, learn from others and bookmark useful cases.
I’m not sure this is what the medical community requires right now, but I’m always curious about further developments.
According to the co-founder, Joshua Landy, MD:
“I developed Figure 1 because I wanted a safe way to share medical images with the medical community, while protecting patients’ privacy.”
Hugo Campos is well known in the health 2.0/e-patient communities and now he made another step forward in changing healthcare. Even though I teach medical students not to give medical advice online, this little story should give us a glimpse about the near future of healthcare. He posted his ECG results (with AliveCor) on Twitter asking the opinion of cardiologists.
Earlier tonight, at around 7:25 pm, I noticed a fluttering sensation in my chest. My first thought was atrial fibrillation (AF). I’ve had quite a few runs of AF, so I’m familiar with its symptoms. I immediately grabbed my iPhone ECG recorder, licked the electrodes (I know, gross, but I wanted a sharp recording), lifted my shirt and placed the device against my chest hoping for a clean recording. Until now, I hadn’t been fast enough to catch an arrhythmia in action. But this time, I caught the tail end of the episode. I tweeted the experience.
Prognosis, which I covered before, just came up with a new application that aims at assisting medical professionals in crowdsourcing clinical problems. It differs pretty much from HealthTap as patients are not involved with this and the community is international.
The app links you to a community of medical professionals who help out each other by answering questions and clarifying doubts via their hard earned experience and academic excellence.
In order to provide a conducive, respectful platform to share questions and clarify doubts, all users are obliged to adhere to a code of conduct and thus be courteous.
I’ve been teaching medical students about using social media for years at two medical schools and through a digital format as well. These courses consisted of series of extended Prezi.com lectures, written exam and constant online communication with students discussing their questions on Facebook and a blog.
The challenge I face now it that I try to include more practical sessions (tasks they have to do online after each lecture) in the course, and I’m wondering what these may be. Any suggestions?
There is an amazing and moving story on Paul Levy’s blog about an ex-soldier who got wounded in Israel and an American doctor saved his eye sight. He would like to thank the doctor but could never track her down. Maybe we could.
In 1973, 20-year-old Boaz Tamir was the leader of a defensive tank group on the Golan Heights in Israel when the Syrians attacked. In the course of the battle, he was blinded by shrapnel and taken to the closest hospital for treatment.* That small hospital was in Tiberias and ordinarily would not have had an eye specialist present. But a young American doctor who had been visiting one of the Jerusalem hospitals for clinical rotations was assigned to this hospital in the periphery. It turns out she was very adept at eye surgery and was able to remove the metal particles, and he recovered his eyesight.
Because Boaz left in such a hurry, he never had a chance to thank the doctor. He later tried to track her down but was unable to find her.
To sum it up, we are looking for a doctor who did her clinical rotation in a small hospital in Tiberias in 1973. Please share this message.
A few months ago, I described a project in which a husband tried to crowdsource the diagnosis of his wife. They received so many ideas about the potential diagnosis, that in a new Innocentive campaign they are trying to crowdsource the method with which this huge amount of data could be analyzed.
If you have ideas about it, please join their community!
On August 13, 2012, we launched an InnoCentive Brainstorm Challenge with an unusual goal: to crowdsource a definitive medical diagnosis for a patient whose case has stymied doctors at Stanford, Harvard and the National Institute of Health. More than 1500 Solvers joined our challenge, generating 108 pages of hypotheses for our team of specialists to evaluate. Now, we are returning to ask the Solver community to join us on our new challenge: help us to define the next phase of our journey, to bring us closer to our goal of reaching a definitive diagnosis.
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.