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

Updated – the last paragraphs had been chopped off. –Updated again: somehow when I edited it last night, using my phone, comments got shut off. THAT was a mistake!  Fixed – please do discuss.

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. Continue reading →

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:
Continue reading →

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

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 controlsexually 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??



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

During my illness, my patient community at (now 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: Continue reading →

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!


Request: true stories of where patient engagement in the chart made a difference

Vermont IT Leaders logoI’m giving a talk in Vermont next week, to health IT workers, and in talking with the organizers we realized it would be great to give them a vision of WHY we’re doing this – some true stories of where patients benefitted from seeing the data in their chart.

(By the way, the event is open to the public, and is just $99, an amazing deal. Among the speakers will be Karen DeSalvo, head of ONC.)

Anyone??  It could be yours, or one you’ve seen in the press.  I blogged about it on and have started collecting answers there.

You can post your own stories, or just go read what reality is in health IT these days - can you say “Let patients help!”?


Talks in Stockholm, part 2: “Dagens Patient” workshop at Karolinska Institute

This talk, last Wednesday in Stockholm, was for a significantly more academic audience than I usually face: A packed room at Karolinska Institute, the university that is the home of the Nobel Prize. The purpose in this case was to kindle some significantly new thoughts in a super-sharp audience: 20 researchers, 10 patients, 5 students, 5 healthcare professionals, academic think tank leaders, leaders in healthcare professional bodies, 5 health care professionals , 7 health care designers. A lot of people also had more than one role. Wow!

The event was part of an important Karolinska project called “Today’s Patient” (“Dagens patient”). It’s got e-patient written all over it. (This is a continuation of last Thursday’s post of my talks Monday and Tuesday at Digital Health Days in Stockholm. The closing panel video is up now.)

Email subscribers, if you can’t see the video, click here to view it on YouTube. 

(How about the nifty video editing by Anders Westin?? I don’t know how he did some of that magic! For fun he also created another “mash-up” of the song Gimme My DaM Data and photos from the day – I’ll add that at bottom.)

At the start you’ll see the introduction by Karolinska’s Pär Hoglund and Sara Riggare. Pär is, among other things, one of Sara’s academic supervisors. Sara is a Parkinsons patient (highly activated e-patient) and member of the Society for Participatory Medicine; she was the ringleader of this invitation, as she also was for my World Parkinson Congress talk, which I blogged about last November.

As I said, the purpose in this case was to kindle some significantly new thoughts in a super-sharp audience of academics and innovators in the Swedish system. Did it work? Well, yesterday I learned that they’ve decided to translate my book Let Patients Help into Swedish. I’d say that’s a win.:-)

Continue reading →

On the road to Medicare, part 2: comic relief:-)

If you can’t see the video, click here to open it on YouTube.

Second in a series of posts as I approach Medicare in February. Part 1 was here.

Thanks immensely to long-ago co-worker Harry Zane, now an experienced Medicare participant, for this 15 minutes of standup comedy. I didn’t just laugh out loud; I hooted.:-)

The “comic” is Fritz Coleman, who (it says) is an icon in LA broadcasting – longtime weather person. Say hi to him on Twitter at @FritzNBCLA.

They did some odd editing in random places, inserting pictures of conference participants on top of the video, with no connection to what he was saying. Don’t let it throw you – enjoy. (My favorite was the smiling young nun whose face appeared as he was describing his 95 year old mother!)

Talks in Stockholm – the Land of Nobel

I’ve been traveling (and recovering) enough that I’ve not blogged as much as I want. I’ll weasel out of that:-) by posting some videos. Here’s the first post.

Digital Health Days – Stockholm
(20 minute opening keynote,
tying our movement to the history
of the Nobel Prize in Medicine)

This is almost a completely new talk. Stockholm is the home of Karolinska Insitute, which is the home of the Nobel Prize. On the day before my talk, wife Ginny and I went to the Nobel Museum and looked at the exhibits about the winners of the Nobel Prize in Physiology or Medicine.

Trying to do the opening keynote for a two day conference in twenty minutes is a bitch of an assignment, frankly. I left 1/3 of my talk in the hotel room (not enough time) and still had to skip 1/3 of my slides. For this audience, my talk touched only lightly on my cancer story – I quickly jumped into lessons I found in the Nobel stories. My intent was to convey:

  • The world truly has changed. The nature of how we know things – and can know things - is different from thirty years ago.
  • Even in the best of establishment medicine, resisting change has sometimes cost us decades of progress. Beware of this. Be open to new realities.
  • Patients are the ultimate stakeholder. They have the most at stake, and can contribute real value in new ways.

My voice starts out dry and scratchy – speakers, don’t forget to hydrate!  (Subscribers, if you can’t see the video, click here to view it online)

Other resources from the event:

(I was blown away by how fast the videos were posted!  My talk was at 9:30 a.m. and it was edited, with slides, and posted on YouTube by lunch!  The conference world has much to learn from this AV team from

Six month countdown to Medicare! What do I need to know?

65th birthday cake by Oana Go (Germany). Click to view project on Craftsy.

65th birthday cake by Oana Go (Germany). Click to view project on Craftsy.

Yesterday I blogged about my business’s fifth birthday … and this week, it turns out, marks six months before I turn 65!

And that means I go on Medicare.

I’ve learned enough in these five years to know at least two things:

  • You’re a patsy if you think the American medical system will necessarily take care of you. It might, but if it does, it may be in the process of making itself a boodle of money.
    • Yes, there are many exceptions – individuals and organizations who care and who work hard. But I’ll repeat: you’re a patsy if you sit back and assume the system will take good care of you.
  • When it comes to money in American healthcare, don’t expect anything to be explained clearly.
    • 18 months ago I blogged about a famous policy paper, Hospital Pricing in America: Chaos Behind A Veil of Secrecy by Princeton economist Uwe Reinhardt. That paper was published 8 years ago, and hardly anything has changed. (The title of the article is real and not an exaggeration.)
    • In 2013 I lived the chaos and the veil myself, in my own shopping for everything from CT scans to shingles vaccines to skin cancer treatments. I saw at close range that Reinhardt was not exaggerating, and I blogged it in a series called  “cost-cutting edition.”

There are signs of hope, such as ClearHealthCosts, but although I work for change, I’m not waiting for the posse to save me.:-)  I’m gonna be pro-active, engaged, empowered, responsible! I want to get educated, because I’ll be on Medicare for the rest of my life. And I want to approach the education from the patient’s perspective … not what the system wants to tell me, but what people like me have found necessary.

So, you who’ve been through it: what do I need to be aware of? What choices will I need to make?

I do know these things about Medicare: Continue reading →