Power to the Patient!
Boy, is this a thrill: the Chief Residents at the Mayo Clinic have invited me to be their Visiting Professor in Internal Medicine next March.
A patient. As Visiting Professor. Is that a sign of the changing times?? The announcement is being made today, during the patient panel at Mayo’s sixth annual social media summit. Here’s their post, including a four minute video interview.
Here’s their press release – their words – then I’ll discuss below.
For the past year I’ve had a disastrously bad experience as a Mac user, to the point where I had long Facebook discussions on how to select a Windows “ultrabook” – super thin and light, like my current Macbook Air. The final (at last!) happy outcome, just last month, shows the difference between two things that are vital in medicine too:
Ultimately a friend at Beth Israel Deaconess (a doctor!!), Henry Feldman, and his colleague Eli Kaldany, figured out what my problem was – in August, nine months into the problem. (They saw me bitching on Facebook.) They nailed the problem in less than an hour. And, ironically, when another problem happened in September, I finally found someone capable at Apple – and discovered a bit of news I’ll share in a moment. [Read more…]
This is the latest in the Speaker Academy series, which started here. The series is addressed to patients and advocates who basically know how to speak on a subject but want to make a business out of it. I’ll try to be clear to all readers, but parts may assume you’ve read earlier entries.
I’m at the 6th annual Mayo Ragan Social Media Summit, in a session called Video Boot Camp. It’s conducted by former PBS producer Drew Keller, and his thinking about how to think out a video exactly matches my advice in this series on how to think out your speech.
Examples:
[Read more…]
Latest in the occasional series of e-Patient Requests.
A friend writes (anonymized):
Someone I know was just diagnosed with colon cancer. Yikes.
It seems to have been caught very early (routine colonoscopy, no symptoms) and she is now going through the genetic testing/biopsy/CAT scan stage over the next few weeks.
She asked me if I knew anyone who could tell me who the best drs (colorectal oncologist-surgeons) are in the NYC area. I’d deeply appreciate any advice you can give me for her. Thanks.
I don’t know individual doctors and I don’t know anything about colon cancer, but I know I’ve crossed paths with many of you out there. I realized that my Communities page has information about gut conditions IBD and celiac, but nothing about colon cancer. Help! I need two things:
And let’s add a third:
I’m hesitant to ask for specific recommendations here, because advice from strangers may not be worth much; I know first-hand that in a good community, advice is cross-vetted by a larger number of people. So I’m most interested in that.
If you want to offer the friend specific recommendations, please email me via my Contact page.
I could smack myself for not noticing this earlier, but it happened while I was at the ESMO conference in Madrid last month: Amy Dockser Marcus has another great piece on how medicine is truly starting to engage with patients as active contributors to improving healthcare. Woohoo!
The lede:
Scientists regularly sign up patients in clinical trials to test new treatments. Now, they are seeking patients to help them design some of those trials.
Patients and researchers can bring different perspectives to treating disease …
Doesn’t this dovetail deliciously with the presentation I blogged about, in my previous post?? Imagine: Scientists asking patients what they think is important! It seems clear that medicine is starting to act on the Institute of Medicine’s mandate in Best Care at Lower Cost:
A learning healthcare system is anchored on patient needs and perspectives.
Clearly, science is starting to act on the realization that patients are no longer the passive recipients of what scientists think. (It also matches nicely Laura Landro’s front page WSJ piece in June, “Health-Care Providers Want Patients to Read Medical Records, Spot Errors”.
This is a major shift in the wind, and it’s spreading. Watch for more of this in the coming months.
I’m in Madrid at the ESMO Congress, “the European ASCO.” (ESMO is the European Society for Medical Oncology; ASCO is the American Society of Clinical Oncology, and its annual conference is huge, as is ESMO’s – over 18,000 attendees.)
Yesterday I led a session titled Meaningful patient involvement in clinical trial endpoints, and a couple of slides stopped me in my tracks. (If you don’t know the term “endpoints,” see discussion below. In short, it’s what they decide to measure, to see if a treatment is effective.)
The first slide here (click it to enlarge) points out a disconnect: the yellow triangle shows that today, patients are mostly involved toward the end of the process – after someone has decided what should be studied, and designed a trial to do that. At bottom right, in the blue band, we see that in this model the patient’s role is “doing things right.”
But the creator of this slide is German doctor Bettina Ryll (living in Sweden), whose husband died of malignant melanoma. [Read more…]