e-Patient Dave

Power to the Patient!

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WSJ: “Researchers are asking patients to help design clinical trials.”

Screen capture of Wall Street Journal

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.

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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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Another unmentionable: Who’ll take care of all the old people?

After reading this, be sure to read the comment from KP doc Wes Lisker.

This is for the “Unmentionables” panel today at Health 2.0 in San Francisco.  Susannah Fox blogged about this now-annual panel, which gets into “the real barriers to good health — all the stuff that nobody wants to talk about but which we know is at the center of people’s lives – and the future of healthcare:

We talked about financial stress, birth control, sexually transmitted diseases,how to increase physical activity among tweens, smoking cessation, how clinicians can have an authentic voice online, and supporting overall behavior change (just to name a few).

For today’s panel she asks for new unmentionables. Mine ties in to her previous post, “Prepare.”  It’s quick – please go read it, and especially note the amazing animated graphic that shows how the age mix in our population is shifting astoundingly as boomers age and don’t die.  Because medicine has gotten really good at saving lives.

Health 2.0 co-owner Matthew Holt @BoltyBoy pointed out it’s even more alarming if you add in the growth in population.  I decided to do that – I did some clumsy screen grabs and added some notes. Result:

1. The shift in percentage by age group:


2. Add the growth in US population, and add a blue bar on the side that shows the number of people 85+:


Who’s going to take care of all the old people??

The cost of assisted living and skilled nursing facilities ought to scare the crap out of you – as should the risks caused by the reality that people try to defer more care.  I commented on Susannah’s post with links from a Boston Globe article this Sunday about disasters in local assisted living places.

Who’s going to take care of all the old people??

 

 

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The diverse nature of patient communities: a prostate cancer patient’s experience

During my illness, my patient community at ACOR.org (now SmartPatients.com) played an important role, but it’s not easy to find a good community for most diseases. (For instance, the most common cancer in the world is skin cancer, and I haven’t found a single smart, active community for its patients.) So several years ago I started a Patient Communities page on this site, to collect whatever information we can find.  Maybe someday we can get some funding or a volunteer team to organize it better, but for now (as patients always do) we’ll make do with what we have!

Last week in Vermont, at the VITL health IT conference, after a workshop session, audience member Damon Lease said he’s found several different communities for prostate cancer, and found that each has its own personality. In my view that’s no surprise – people are different, and there’s no standardized way for communities to form and grow. Consider the diverse nature of the groups Damon found, on this one disease. From his email: [Read more…]

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A new vision of telehealth: the “epital” – getting the care you need while “outmitted”

Thanks to Torben Rügge of Cure-It for this tip. We met at the Karolinska Institute event I wrote about recently.

People in medicine are talking endlessly these days about patient-centered care.  (Some prefer “person-centered.”) Many are asking what the term means, and some patients are responding, “Thanks for asking! How far will you let us take it?”

Here’s a vision of a future healthcare system, presented at TEDx Copenhagen in 2012 by Danish Dr. Klaus Phanareth. I’m amazed that I haven’t heard of this talk – it’s aligned with my way of thinking and very thought provoking. 14 minutes. (Email subscribers, if you can’t see the video, click here.)

The scripted scene (at 9:52) is of course idealized, with your own doc and your own health coach happily available the moment you call. But aside from that, think about what doses of care the patient is getting … and think about whether she would have gotten what she needs, if she’d had to bundle up and get in a car to go get it.

Then think about your own medical incidents, your kids’, your parents’… think about the future. Can you get the dose of care you want?

People in other countries are working on things like this, and I see no reason why we all shouldn’t.

Next time you need care, ask yourself: do I need to go see someone face to face?  Sometimes we do, but …

If we really want care to be patient-centered, are we ready to make the whole thing be as convenient as we’d like? What are the obstacles?

Related post: my encounter with the Swiss medical system, which began with a Skype telehealth “visit” with my primary overseas. I liked that. That was patient centered!