I have a Google Alert for “e-patient,” and sometimes I’m surprised what it catches. Tonight it was this:
3 Reasons Steve Jobs Will Be The Ultimate e-Patient
Steve Jobs’ medical leave sets the stage for the upcoming revolution in the production and delivery of medical information at time of diagnosis. 3 things you need to know.
So I’m thinking, oh, migod: is the term “e-patient” going mainstream??
That would be a hoot, because indeed the Society for Participatory Medicine is engaged in spreading the word.
The media continues to propagate the erroneous diagnosis of Steve Jobs “pancreatic cancer.” This is a tremendous disservice to the public and misleading to Apple shareholders and a striking example of the need for increased health literacy and medical knowledge among consumers (and reporters and journalists).
The tumor that Mr. Jobs had has a very different prognosis and treatment options than the cancer which has lead to the deaths of many other public figures (e.g. http://bit.ly/erRX9Q).
We have written a series of articles on Jobs’ real diagnosis and treatment. Here’s one: http://bit.ly/haTh24
Very good point, Mark!
And of course, just this week, there was some very BIG news about Islet cell neuroendocrine tumor.
Just look at good reporting, coming from a tech publication, TechNewsWorld, not a medical one.
As an aside, ACOR has very good groups for pancreatic cancer, carcinoid and MEN-1, 3 types of cancers covered in the article. Of course, the news about the research have made the rounds of each of these groups.
I almost forgot that Bill Claxton, one of the list managers of the ACOR CARCINOID group wrote a remarkable e-patient post here a few months back: It Takes Guts To Be A Neuroendocrine Patient: A Story of Participatory Medicine.
These are great resources, Gilles. I wish I had read your replies before we published our MedPageToday story on Jobs
Nice! OMG indeed!
As a person with carcinoid, I agree with writer Mark Boguski re. the “selective” reporting of Mr. Job’s cancer. He could help those of us floundering for research monies, recognition of this cancer by physicians and the general public if he “came out”. Conversely, I also understand where he is coming from as, unfortunately, the stigma of cancer is alive and well and as a business man, he would suffer.
I appreciate the article written about Mr. Job’s neuroendocrine cancer. Can’t help but wonder if it is our business to “out” Mr. Jobs! Where does one draw the line??????
Thank you for the link to our post “3 Reasons Steve Jobs Will Be The Ultimate e-Patient.” As the author of the post, I can tell you that yes, e-patient is used constantly, particularly at the pharmaceutical conferences I attend. (In fact, at one of these conferences, your name and your site came up during an informal lunch discussion of patient-centric care)
As someone who narrowly survived a run-in with the healthcare system (12 physicians, 2 lawyers) I can honestly say that had it not been for sites like this and advocacy efforts like Society for Participatory Medicine, I wouldn’t be here today.
For those interested in carcinoid tumors, you will find these two articles helpful: