Let Patients Help is a successful book, but in the early days of its movement, it was common to hear skeptics say “This is only in America.” Boy was that wrong.
The first massive proof was TEDx Maastricht, the seminal event constructed by Lucien Engelen from Radboud UMC (university medical center) in the Dutch town of Nijmegen. It was such a big deal – the first conference I know of anywhere that was totally focused around patients … so many patients that a blogger Grand Rounds was devoted to videos of the talks patients gave at that event.
It was the first time anyone heard the chant “Let Patients Help” in a TED Talk, and the response has been enormous: almost a half million views so far on TED.com. TED says there’s usually the same number on other sites, so that means almost a million views. Volunteers have added subtitles created in 26 languages, so I’d say it’s not “only in America.”
This fall, Europe goes “e,” big-time, with four events in one month.
In November four events in four European customers will focus on Let Patients Help, all driven by visionaries who are seriously working on patient engagement – in Athens, Budapest, Amsterdam and Brussels.
- Friday-Saturday, Nov. 8-9, Athens, Greece: Patients In Power conference (Twitter @PiPGr and #PiPGr), organized and produced by amazing Greek advocate Kathi Apostolidis. Kathi is a force of nature, and I mean a force that can overcome the worst of circumstances. (The Greek economy is a disaster, and so is it healthcare system, but she’s an unstoppable stand for better care for all.)
- Friday will be a day long conference, followed on Saturday by another e-Patient Boot Camp.
- On the site’s home page look at the incredible list of sponsors she’s assembled – and this is in her spare time while spending much time in Brussels as vice president of ECPC, the European Cancer Patients Coalition.
- See also her mention of the Patients Included badge, which Lucien created.
- Kathi has a Greek translation of Let Patients Help in process.
- Because Kathi arranged support for the Athens trip, I’m able to do another event on Tuesday, Nov. 5, in Budapest: Bertalan Mesko’s Social Media in Healthcare course at Semelweiss University. Open to the public.
- Since his early 20’s “Berci” has been a pioneer and real visionary about social media in medicine. See his site Webicina – a curated list of resources for e-patients and their providers. (Disclosure: I’m a Webicina advisor.)
- Berci has produced a Hungarian translation of Let Patients Help, which may be available in e-book format.
- Friday, Nov. 22, Amsterdam: a private client event in the business community.
- The client has produced a custom edition of Let Patients Help, with a special prologue.
- Monday, Nov. 25, Brussels: Are We Ready for Patient and Family Empowerment? is the Belgian government’s 7th Symposium on Quality and Patient Safety. Open to the public (register here) but seats are limited.
- Kudos to Twitter friend Kris Vanhaecht for the connections to enable this participation. We knew each other online; this summer we met up at Harvard Square when he was in town, and one thing led to another.
- Belgium is one of the most advanced governments in the world in their thinking on patient engagement. They showed me a PowerPoint of their initiatives – I hope they’ll let me publish it.
- Lucien Engelen has a Dutch translation of the book. (I don’t know if it’s available for purchase yet.)
- For Belgium’s other language there’s no French translation yet.
As the map at top shows, in between I have events in San Antonio (a private corporate event) and then in Washington the opening keynote at the AMIA annual conference (American Medical Informatics Association, my health IT geek brethren and “sistern.”)
Six cities in five countries, in five languages. (Brussels is French and Dutch.) I’d say this movement is not “only in America.” Let Patients Help is truly a worldwide movement, and I love the vision and commitment of the people organizing these events.
Thank you to these visionaries. Readers, if your government or organization wants an event or a custom edition of the book, see the contact page. I require funding (I have no day job and no foundation support), but obviously I’m willing to travel, and as an evangelist I’m happy to train your advocates too.
Thank you Dave for your kind comments but the credit is not only for me! The amazing Patients in Power conference that gathered some 450 participants last year, was a real feat, as few believed that a patient conference would be possible…
It was made possible because all involved embraced the Patients Included principle from the very first day and because the Organizing Committee, made up of 13 leaders of patient organizations from various chronic and rare diseases and three doctors, two of whom are Professors of Medicine (www.patientsinpower.gr/default.asp?pid=3&la=2) worked diligently to prepare the content, select speakers, prepare the workshop, showcase best practices of patients organizations, select the healthcare organizations leaders and politicians to have a dialogue session with them and much more. We had sponsors who believe in us and helped make it happen and a conference organizer who did all the nitty-gritty…
I am sure that the only 400 or so printed books of the Greek translation of “Let Patients Help”, with a preface I have written for the Greek edition, will disappear quickly and that they will soon become a patient collector’s treasure!
When patients pull up their sleeves and get to work the results are startling, as you will have the opportunity to see on Saturday, Nov. 9 afternoon.
For those who wonder what a patient conference is about see the topics: patient-centered care, patient empowerment (Dave will teach us!), patient involvement, how technology can help patients cope with the disease, what’s in for patients in cross-border healthcare, and more…
Check the program http://www.patientsinpower.gr/default.asp?pid=4&la=2 and speakers line-up:
Deputy Minister of Health, Dirk Horemans/WHO, Martha Hayward/IHI, Steven Laitner/NHS, Marianna Labrou/PESPA-Eurordis, Yannis Natsis/TACD, Nikos Dedes/PositiveVoice-EMA,Mariano Votta, ACN, Christina Papanicolaou, General Secretary of Health, Dr. Theodore Vontetsianos,Pulmonary Physician-HIT geek, Athina Varela/Children with Genetic cardiac disease.
For all e-Patient Dave’s and my friends abroad, please note that the event will be live-streamed and live tweeted! (last year I thought that I would be a lonely birdie at #PiPgr but surprise, surprise! tweeters flocked in from every part of Greece and abroad! Symplur said….) So we count on your encouragement and presence, physical or digital!
There will be simultaneous translation but last year we could not technically show subtitles in the other language on the live streaming. Hope this technicality is solved this time.
Great to hear, Dave! As a patient/family member working for health and health care improvement in the US who recently moved to Europe, I can wholeheartedly agree with you. Like you, I too once thought that barriers to authentic patient-professional partnership were mostly American; after all, we had been led to believe that many of our challenges stemmed from a lack of access to health care through universal coverage, a problem that most European countries had already tackled.
After moving to Sweden and becoming involved in care improvement here, I can clearly see that the challenges and opportunities run so much deeper than how our care is organized or paid for. Deeply rooted cultural beliefs have created systems that, despite the desire for change, are kept in tact by inertia, lack of good models and fear on all sides. From this, I can only conclude that creating a system in which patients and professionals create new and preferred resources isn’t just national but global.
We have so much to learn from each other and to share with each other. Best of luck on your Grand Tour!