e-Patient Dave

September 5, 2014 By e-Patient Dave Leave a Comment

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

I’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 e-patients.net 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!”?

September 2, 2014 By e-Patient Dave 1 Comment

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.:-)

[Read more…]

September 1, 2014 By e-Patient Dave Leave a Comment

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!)

August 28, 2014 By e-Patient Dave Leave a Comment

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:

Other videos from the event – plenary speeches (all 20 minutes) and hallway interviews, including
- A 6 minute hallway interview later that day, and a later 9 minute one
- All day 1 plenaries
- Day 2 plenaries
  - Includes the closing panel, of which I was a member
Conference website: Digital Health Days
The #dhd14 Twitter feed and analytics on Symplur

(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 FKDV.se)

August 21, 2014 By e-Patient Dave 20 Comments

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

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: [Read more…]

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

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

And, looking forward…

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