e-Patient Dave

Power to the Patient!

By Leave a Comment

Coming to Switzerland. Add an event?

Swiss flag
Source: Wikipedia

Special invitation to Swiss readers! This is an opportunity to book an event this June at a greatly reduced price compared to my usual rates. Because it’s Switzerland. :)

Early in 2011 two extraordinary invitations arrived. The first was to speak at TEDx Maastricht, hosted by my now-good-friend Lucien Engelen at RUMC. It was an amazing TEDx, mostly about patients, with most speakers being what I now call “actual sick people.” Lucien gets it, and the experience was mind-blowing (and changed my life).

German cover from AmazonThe other was from a couple with a consulting business called IKF, in Lucerne, Switzerland. They completely see the e-patient future, and every spring since then they’ve invited my wife Ginny and me to come back. We don’t make much money on it, because they got me when this was all brand new, and c’mon, it’s Switzerland, and  the scenery is just unbelievable… I teach a half day session in the e-health course they teach at the university, and they organize a few speeches in the area at greatly reduced prices, for any sponsor. That covers the costs with a little left over.

Because they were sponsors way back in the beginning, in my price policy they qualify for the “BFF” discount, which we extend to everyone who books something as part of this annual trip. They were also the ones who told me I had to write Let Patients Help … so they could translate it into German for use in a textbook!  So I wrote it and they translated it. (I’m not kidding – this is the kind of change-oriented visionary I love to do business with. Wouldn’t you??)

(They also had Lucien write a section – no coincidence there!)

This year’s trip is June 7-13. If you’d like to sponsor an event – a speech, a private consultation, whatever – please contact andrea.belliger at ikf.ch who is coordinating.

By 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

 

 

By Leave a Comment

The movement comes to Latin America! Listen on W Radio Colombia live, 1 ET

Click to access the livestream player

A very quick note for a last-minute event: I’ll be interviewed live today on W Radio Colombia. (Producer Marianggela Cortés Forero tells me it’s “a news station with audience in Latin America, EEUU and Europe. Number one in Colombia.” (Twitter: @WRadioColombia)

Here’s the Listen Live link. If you miss it, a recording will be posted after; I’ll add the link here.

Related information:

  • Here’s information on the Spanish edition of Let Patients Help! A Patient Engagement Handbook, on Kindle and in print.

By 3 Comments

“Activate your super-patient powers”: Public event (free!) at Brown next Monday

Superpatient flyer screen capture
Click to view & download the PDF (459k)

For years I’ve been saying that this movement won’t really be creating change until it gets out of the conference world and reaches Main Street. (Often I say we won’t really be getting there until the people you meet at the grocery story know what we’re talking about.)

So you can imagine how thrilled I am that Brown University in Providence, R.I. is supporting a first-of-its-kind grass roots event next Monday night, attached to a session I’m teaching the next day for one of their courses.

We’re playing with the idea of tying this to “how superheros got their superpowers” – the so-called “origin story,” like Peter Parker and his radioactive spider – to help people see that they may be capable of more than they realized. And in that context, we realized we have three different types of “superpatients”, who will present:

  • Acute care, like my kidney cancer – it came up suddenly (and now it’s over)
  • Chronic care – people who manage a chronic condition, like famous diabetes blogger Kerri Sparling (@SixUntilMe)
  • Crisis care – patients or caregivers who step up in a crisis and do everything they can to help, exemplified here by Pat Mastors (@PMastors).

These cases are all very different but they have a common thread: when patients get activated they can make a huge difference.
_________

This event all came together very quickly, so I apologize for the last minute nature of this notice. If you can come, that’ll be great. In any case, feel free to download this PDF or just send people this link.

If this gets great reviews, I hope to do more. If it doesn’t, we’ll fix it. Because from now on it’s “game on” – let the change take root!
__________

The course where I’m speaking is Brown’s Executive Master in Healthcare Leadership program – a year-long course for mid-career executives. Tuesday is their final session of the course. Thank you to Angela Sherwin and Judith Bentkover for their vision, and to Brown’s program for helping make this happen!

By Leave a Comment

Notes for @BCPSQC #QualityChat Twitter chat

BCPSQC web logoFor Wednesday’s “#qualitychat” Twitter chat here are a few notes.

A few notes from participants at the February event

  • “The BC Cancer Agency has led a provincial project asking patients for solutions to some of the lower Provincial Cancer Care Patient Experience scores.  It is a project to listen to the patient voice and implement some solutions that came from patients and their families. … [We have been] inspired to come together as a province to have a provincial approach and also, look at solutions that patients suggest. ” Sue Fuller Blamey Corporate Director, Quality & Safety, Provincial Health Services Authority and BC Cancer Agency
  • Let Patients Help “was sent to all Community Engagement Advisory Network members … It is also a resource that we like to share in our day to day work now.” Saori Yamamoto Community Engagement Advisory Network Co-ordinator, Vancouver Coastal Health
  • “It really brought things back to the patient and showed us THEIR perspective on healthcare.  One thing that really stood out for me what the emphasis on including patients as partners in their own care, full members of the care team.  It challenged the all-too-common thinking that they are just unknowing recipients of the care that “the experts” decide is right for them and showed that, not only are many of them intelligent and able to participate in the conversation and decision making, but also (and perhaps more importantly), that they are real partners in it, with as much knowledge and information to share re: the “problem” as anyone else on the team.” From a Quality Improvement Consultant
    • Note how this echos the thinking of the Mayo Clinic’s chief residents in this post

Post-event summaries

In less than an hour, moderator @Kevin4Quality (Kevin Smith) posted the after-event resources!

Thanks again to all for a great event!

By 11 Comments

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…]