Government

June 3, 2015 By e-Patient Dave 2 Comments

My comment submitted for Meaningful Use Stage 3 last week

This is long but if you’re interested in patient data access I hope you’ll find time to read it. Something important is afoot in federal policy.

Updated 6/4 – added a link to a doctor’s blog post

Over on e-patients.net, the blog of the Society for Participatory Medicine, for weeks there have been blog posts about an important moment that’s happening right now in Federal health policy. The details are complex and geeky (imagine that, with Federal policy) but here’s a tiny tiny nutshell, for readers of this blog:

In the 2009 federal stimulus bill (not as part of Obamacare), billions of dollars were designated to help doctors and hospitals finally computerize.

To get the money, they have to not just buy the system and let it collect dust; they have to put it to “meaningful use” – “MU,” as it’s often known.

Not surprisingly, what you have to do to get the money is a topic of hot debate and much lobbying.
- Remember your civics class? The Legislative Branch writes a bill, and then in the Executive Branch, regulators write the regulations that put the law into action. The regulators get to say specifically what’s legal and what’s not. (See, lobbyists aren’t just on Capitol Hill – they talk to the Executive Branch too.)

An important part of this discussion for several years has been whether they have to give you and me our data that’s in their systems. Basically: can they use those systems to create your medical record, hoard it (keep it from you), and still get their federal reimbursement??

[Read more…]

December 27, 2014 By e-Patient Dave 1 Comment

Involving patients in the DESIGN of clinical trials

Link to my speech video — Click to view the video

This post is a mixture of glee and facts. I hope you’ll find plenty of both. Because, you see, lately I’ve been speaking and blogging a lot about the changing role of patients in clinical trials … and in the spring of 1972, I myself was a subject.

In the US government’s pot smoking experiments.

As you’ll see, the timing was amazing – they told me I was subject #1. And, as you’ll see, there’s evidence they meant it.:-) To watch, click here or click the image at right.

I’ve been waiting years for the right moment to share this story, because it’s a hoot – and this year the time finally came:

It had to be the right setting, and Daniel Kraft’s Exponential Medicine conference is just right – it’s wiggy and futuristic but real science and realistic.

The story also needed to be told in a valid context, and everything lined up:
- In September fall I spoke in Madrid (blog post) about the role of patients in research
- At the same time, the Wall Street Journal had a great article about patients being listened to differently by researchers (my post)

So I pitched the idea to “xMed” director Daniel Kraft MD (who’s also a fighter pilot, btw), and he agreed. I guess it worked out, because today on Facebook (see illustration) he posted the video and said:

Brilliant lessons … 1970s experience as a marijuana clinical trial subject at MIT … has implications for the design of today’s clinical trials … one of [the] highest rated (and funny) talks

That sounds like a happy conference organizer.

Enjoy, and please share widely! Who said science can’t be fun??

Additional resources

Errata

For a number of reasons I only got 90 minutes of sleep the night before, and I made (at least) these mistakes:

Early in this speech I show some slides from my TED Talk in 2011. The slides have a typo – they say 2009.
Around 6 minutes I say that Dr Bettina Ryll shared my session at the Madrid conference. Dr Ryll did create the slide I showed, but my session was shared with Mrs Anastassia Negrouk, who’s also in this speech.
On the very last slide the William Gibson is correct but I misspoke – I said “not easily distributed” when it should be “evenly.”

Related links cited in this speech

The TED Talk
The IOM’s 2012 report Best Care at Lower Cost, with the important declaration that the learning healthcare system should be “anchored on patient needs and perspectives”
The Wall Street Journal article that I cited, on researchers actively engaging patients on how they see the issues
The FDA announcement that I mentioned at the end, announcing patient participation in medical product discussions

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…]

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…]

July 2, 2014 By e-Patient Dave Leave a Comment

There’s something about Canada: patients, empathy, quality and action.

Added later: on Twitter a number of frustrated Canadian patients expressed surprise at this, because of their own difficulties in the Canadian system. I’m obviously in no position to disagree – in hindsight, this post (which is indeed favorable about my specific encounters) may sound like things are perfect there. They’re not, as I said in the second sentence. That’s social media for ya.

But, what I did say here (about my experience) is just what I meant to say.

Some of my best events in the world have been in Canada. Things aren’t perfect there, by a long shot, but since they’re free of the enormous financial pressures of the American system, they’re focused on actually delivering care, and they’re years and years ahead of most of America at taking care of people.

This brief post is about two related events. In February I spoke in Vancouver at the British Columbia Patient Safety and Quality Council. About 10% of the audience was actual patients – something I’d seen earlier at the Saskatchewan Health Quality Council and at Kingston (Ontario) General Hospital. (In general, Canada wins the Patients Included badge bigtime.) That event was a keynote (standing ovation) plus a “roll up the sleeves” workshop the next day: “Okay, let’s go: where do we start?”

To further spread the message to people who weren’t there, here’s a link to their page where they posted the video and slides. (Some of the slides are edited into the video, but I move too fast, so they wisely posted the slides separately!)

Then something special happened: a neighboring group, Vancouver Island Health Authority, decided to kick it up to the next level. So I’m headed back there – less than five months later – for another event, at Island Health. They’ve been on a five year journey, totally admirable, with major cultural transformation that’s already a reality, and they’re still working at it. So it’s truly an honor to be invited back to work on their leading edge.

Here’s an inspiring video they produced about that journey.

[Read more…]

June 21, 2014 By e-Patient Dave 7 Comments

On this day in history: Susan B. Anthony was found guilty – of voting

“Feminism is the radical notion that women are people.” – Marie Shear, 1986. See other feminism quotes on the Wikiquotes page.

Recent speaking clients know that I often note the parallels between the patient movement and other cultural revolutions – the women’s movements, civil rights, gay rights, disability rights. (I mention disability issues less often, but it was disability advocate Ed Roberts who said in the 1990s, after years of struggle: “When someone else speaks for you, you lose.”)

As anyone who’s heard me speak knows, I don’t get overtly “radically” about it. But I’ve been at this long enough now that I do see patterns. And the patterns teach me that the way people see things now may not be how we’ll see them in the future … and it’s up to us all to speak the truth as we see it.

So when I returned from the week’s travels, my eye was caught today by Wednesday’s “This Day in History” in the Boston Globe:

In 1873, suffragist Susan B. Anthony was found guilty by a judge in Canandaigua, N.Y., of breaking the law by casting a vote in the 1872 presidential election.

The Feminist.org blog has a great post about it – here’s how they say they would have covered it, if they’d been around back then: [Read more…]