e-Patient Dave

Power to the Patient!

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e-Patient Request: colon cancer treatments, NYC area

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:

  • Information on patient communities, to add to my page.
  • General advice on how to decide who’s “the best doctor” (which leads to the question “what is ‘best’?”)

And let’s add a third:

  • What-all does a newly diagnosed patient need to know, to get oriented? For me it was reassuring to know the actual odds, first-hand, from others who were in my situation – other patients. (Plus, a lot of their advice didn’t exist on medical websites.)

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.

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How early should patient voices be heard in the research process?

Timeline graphic - when to involve patients?
Click to enlarge. Graphic by Bettina Ryll, MD/PhD, Melanoma Patient Network Europe (MPNE) in EORTC patient course 2014

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…]

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Slides and links for today’s presentation to Rotary Club of Seattle

Seattle Rotary web bannerUpdated 9/29 with the promised additions

Seattle has the world’s biggest Rotary Club – a lot of sharp, focused Seattle business people. Very different from my usual talk to a medical conference … I’m talkin’ to these people as patients and family members! So the content is different, and some is new this week.

Here’s the video (32 minutes):

Seattle Rotary #4, September 24, 2014 on Vimeo.

Two notes about the video:

  • The fonts didn’t upload correctly so some of the layouts overflowed. (30 years into desktop publishing and they still can’t make it work reliably!) An accurate PDF of the slides is on Slideshare.
  • Around 31 minutes I say that I’ll post my call to action online: our society needs mid-level managers who know how to create a team and produce a result! They’re on slides 50-56.

As promised, links to material cited in the talk:
[Read more…]

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Speaker Academy #18: Client Honor Roll – great and valued business partners

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.

In #16 I said “For a small business, cash is king.” This is especially true for patients who are trying to build a small business in speaking, with no financial backing. In this post I want to “spotlight the spotless” – my clients who have honored our partnership by paying every single invoice within the agreed time of 30 days. Thank you!! A couple of foonotes before we start:

  • Date range: This is for events starting January 2013 and ending April 2014. (This May’s events haven’t reached 30 days yet.)
    • I hope to dig back earlier, but before 2013 I was in survival mode and my records were sometimes not accurate. Meanwhile, clients – if you remind me that you paid promptly I’ll be glad to include you – just let me know!
  • Special honor: Some clients are so great that they’re in a special category – they paid on-site or EARLY! (And they reimbursed my out-of-pocket expenses promptly.) So I’ll start with them:

[Read more…]

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e-Patient request: business traveler with diabetes seeks virtual health coach

Latest in a series of e-patient requests.

Last year in an airport I bumped into a  long-ago co-worker. In light of the work I do in my travels it was stunning, because he said he’d been diagnosed with diabetes and he’d felt so alone … he’d never met another person with diabetes.

It stunned me because I’ve long said that diabetes patients are the archtypical e-patients – they have to be engaged in their care, and diabetes has long been the disease with the biggest online communities. But his providers had never mentioned connecting with others.

We parted, and he went back and did so. Today we’re Facebook friends, and now he writes this call for assistance. Kerri, Manny, Amy, Ginger, any of you, what say you? Thanks!

(As I read his notes below about all the things he’s done to be proactive, it’s deeply moving. He’s made a lot of progress but with some embarrassment he’s owning up to what’s not working; still committed to his goal, he’s reaching out for more support. Ain’t that engaged, empowered and responsible??)

So please, DOC (diabetes online community), dish up some advice.  I’ll link this discussion on my Patient Communities page for future reference.
______________

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New wheelchair icon nails the shift to “empowered and engaged”

Brian Glenney and Sara Hendren holding the new wheelchair sign in front of the old one
Photo by John Tlumacki, Boston Globe staff. Caption: “Brian Glenney and Sara Hendren have begun a campaign to change the design of wheelchair signs.”

My Twitter feed was abuzz yesterday with last week’s Boston Globe article by Billy Baker, Wheelchair icon revamped by guerrilla art project, and boy am I glad: aside from being a great story, it sums up everything I’ve been trying to explain about the shift to patient engagement.

I’ve spent time in a wheelchair, I used to teach in a school for handicapped kids, and my wife sometimes uses a chair, especially in airports. The usual view of the chair-bound person is as limited, confined, less able. In some ways that’s valid, but too often it’s overdone. Look at this photo, and compare the new icon with the one in the back:

  • Old: Occupant is sitting, being wheeled around.
    New: Occupant is in power, leaning forward, doing as much as s/he can. (Their site says “Here the person is the ‘driver’ or decision maker about her mobility.”)
  • Old: Occupant seems to be part of the chair.
    New (per the Globe): “the human [is] distinct from the chair, in an active position, with a feeling of forward movement.”

I’ll extend the metaphor: [Read more…]