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“Let patients help reinvent radiology” (my first Periscoped speech)

Tuesday night in Chicago I gave a 28 minute talk for Philips customers at the huge (56,000 people) radiology conference, RSNA. The leading-edge social media guy at Philips, Noah Harpster (@PhilipsLiveFrom), broadcast it live using the free Periscope live-streaming app (owned by Twitter), and boom, here’s the archive. Unpolished, raw, live. Free.  (Email subscribers, if you can’t see the videos below, click here to view the post online.)

This is the first time I’ve spoken to radiologists. This talk has very little about my cancer story, and a lot about the impact on professionals of two things:

  • When assets digitize, things change fast
  • Information makes new things possible

I also pulled out some props – including a 3D printout I had done locally of my lungs (my bronchi and metastases). I told you that when things digitize, new stuff becomes possible.

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Writings and upcoming events – July 2015

Like last month, here’s this month’s update on travels, events, and articles (including a first for me!).

In my travels if you’re in the area and want to connect, contact me.

Writings:

  • Do you use online symptom checkers? Go for it but be wise: Last Friday I was interviewed by the Boston Globe (see below) to comment on a new BMJ article. It was such a stimulating topic I wrote a much-mentioned post about it on e-patients.net, and I hope to be writing more

Media mentions:
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Washington Post: “How is the doctor-patient relationship changing? It’s going electronic.”

WaPo article 04-26-2015It appears the Washington Post is getting seriously interested in both the value of, and the consumer perspective on, health IT. This is a good thing, because (a) the whole purpose of healthcare is to take care of patients, (b) patients (that would be you) are the ultimate stakeholder, (c) no patient can contribute their best to their care if they can’t see the information, (d) nor can any doctor or nurse do what they’re trained to if they don’t have all the information, and (the good news) (e) we all can do better if we have the information.

This is not some crazy call-to-action from the fringes: it’s mainstream. I mean, three years ago the Institute of Medicine (the pinnacle of medicine in America) said medicine depends on “Patient-clinician partnerships” with “Engaged, empowered patients” and must be “anchored on patient needs and perspectives.” And, as my primary physician Dr. Danny Sands often says, “How can patients participate if they can’t see what I see?”

Tuesday’s Post has a pair of articles by Suzanne Levingston. I’m quoted in the first, and Dr. Sands is quoted in the second:

How is the doctor-patient relationship changing? It’s going electronic (above, ~1500 words) is a broad survey of how medicine’s landscape has altered because you and I have the internet, which means we can for the first time in history connect to two pivotal resources: information we could never see before, and each other. (My own story, including how the internet helped saved my life, is on my About page; it was also published in the British Medical Journal two years ago.)

WaPo 2 2015-04-28There’s lots of health-care technology out there. How do you choose? (490 words – a sidebar, I presume) is a brief overview of the wide range of apps and info tools available today. As regular readers know, I view these tools as exactly analogous to the hundreds of desktop publishing tools that became available in its early years: examples of what can be done when data gets free, not all of which should be done, or even has any reason to get done.

But that’s the whole point: when information gets loose, innovators all over creation get to try things – at their own risk, with their own investment – and we-all out here get to make up our own minds about which of it is worth anything. The world shifts. As I’ve often said, “To innovators, data is fuel.” And I’ll never forget Todd Park (the US Chief Technical Officer) shouting from the stage, “Data Liberación!”

Also quoted in the bigger article are my respected colleagues Susannah Fox and Wendy Sue Swanson MD. Fox is widely felt in healthcare circles to be the wisest observer of what you and I actually do online (a debunker of many myths, with facts and heart), and Seattle pediatrician Swanson is almost legendary for her sober, reality-based, compassionate advice to parents in today’s ever-changing world.

Also cited is Dr. Eric Topol, who wrote the introduction to Let Patients Help, which I co-authored with Dr. Sands, and which is now in 7 languages (and a Chinese company just bought the rights). I’ve just finished reading Eric’s new book The Patient Will See You Now, which goes very very deep and wide into these articles’ topics. I hope to review it soon.

More later on why these realistic articles are important at this moment in time. Because just as with the rise of desktop publishing, and just as with Topol’s book, not everyone is happy with the coming change.

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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

 

 

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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: [Read more…]

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

Patients Included badge

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.

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