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Search Results for: "medicine x"

September 6, 2015 By e-Patient Dave Leave a Comment

Writings and upcoming events – September

Open a medical record spigot imageContinuing this monthly series: here’s this month’s update on travels, new bookings, and writings.

Access to our families’ health records:
The time for action is coming 

The best in healthcare of course depends on access to all useful information, but HHS has reported to Congress that certain parties are “knowingly interfering” with the flow of families’ health records. Two posts:

  • Take action: We need a Federal policy change – perhaps even a law – so I wrote a call to action: Open a Big DaM Spigot – Data About Me! As the post says, “All change starts with people asking.”
    • See the post for some simple immediate actions.
    • Talk about it with friends, too – it’s getting to be “Paul Revere” time. Don’t wait til it’s your family member who’s in a crisis.
  • Over on Medium, I commented on a post by entrepreneur Steve Kiernan about this issue, saying:
    “Who out there wants to present an argument why families should be kept apart from their people’s health data? … Is there any ethical or moral argument for no spigots?”

New bookings:

[Read more…]

Filed Under: Business of Patient Engagement, Digests, Events, public speaking Tagged With: #gmdd, epatient, patient engagement Leave a Comment

August 10, 2015 By e-Patient Dave Leave a Comment

Writings and upcoming events – August (corrected)

Click to visit "#HIT99" results post on EMR & HIPAA blog
Click to visit “#HIT99” results post on EMR & HIPAA blog

Some email subscribers got an unfinished draft earlier today. Sorry for any inconvenience!

Continuing this monthly series: here’s this month’s update on travels, events, and writings.

Social Media Recognition: ranked #17 on the “#HIT99” Health IT social media influencers list

Upcoming travels: 

  • August 13-14 D.C.: RWJF National Leader Summit on Integration of Behavioral Health & Primary Care. Participant.
  • August 30-Sept. 02, Nijmegen, Netherlands (Radboud University Medical Center):
    • REshape Hacking Health 2015 hackathon. Judge
    • “Grand Inaugural Rounds” at RadboudUMC Medical School. Speaker.
  • September 10, Lancaster PA: Hospital & Healthsystem Association of Pennsylvania, 2015 Patient Safety & Quality Symposium. Speaker.
  • September 11-19: speaking tour of Alaska! Multiple events in Anchorage and Soldotna
  • September 23-27, Palo Alto: Medicine X | Ed. Speaker at Medicine X | Ed; attending the whole conference.

New confirmed travel plans:

  • October 29-30, Boston: Connected Health Symposium. Attending as SPM partner.
  • March 14, San Antonio: 2016 Parenteral Drug Association Annual  Meeting. Keynote.

Media mentions:

  • The Center for Public Integrity published Obamacare research institute plans to spend $3.5 billion, but critics question its worth
  • ComputerWeekly picked up my “don’t tell patients not to Google” message in a piece by Claire McDonald titled “Stop telling patients not to Google – one man’s quest for joined-up healthcare” – McDonald also talks about the NHS’s efforts to give patients better digital access to their data as part of an ongoing engagement effort. The idea is spreading!
  • British Journal of Healthcare Computing (HIMSS Europe) Vox Pop posted a conversation with input from me, and from Rosamund Snow, Patient Editor at the BMJ, about the value that patients bring healthcare, and the ongoing efforts to build a sustainable framework for patient engagement.

 

Filed Under: Business of Patient Engagement, Digests, Events, public speaking Tagged With: #gmdd, epatient, patient engagement Leave a Comment

July 31, 2015 By e-Patient Dave 4 Comments

August: “retreat and think”

Cover of Structure of Scientific Revolutions 50th anniversary edition

For the month of August I’ll be mostly offline, for a period of “retreat and think.” It’s not a full-bore vacation; I can still be reached for anything time-sensitive (see my Contact page) but I’ll be less active online.

This year has already been full of change – Ginny’s knee replacements, Visiting Professor at Mayo, the first Patient Engagement Fellowship, new publications, and most of all, rethinking what “patient” means (and could mean), per the book that made paradigms famous: The Structure of Scientific Revolutions (right). Our movement is gaining traction, which means a change agent needs to rethink. This month is good for that (I’m only traveling to one event), so I’m going to dial back the dialog.

September will be amazing.

One reason to retreat now is that on August 28 the calendar flips from empty to packed.

[Read more…]

Filed Under: Events 4 Comments

March 14, 2014 By e-Patient Dave 3 Comments

Recent events and postings, March 14

Corrected Saturday afternoon: “Stanford” should have been “UCSF” (University of California, San Francisco)

Boy, is the pot starting to bubble. Word about participatory medicine is spreading, and there are signs that it’s starting to follow the trajectory of other cultural movements. News and posts elsewhere in the past week:

e-Patients.net: Surgeon: “Participatory Medicine encourages partnership between patient and provider”

There’s a stage in every movement where it starts to get discovered by people in the establishment who weren’t among the founders. And there’s another stage, when that person’s discovery spreads into mainstream media. That happened Thursday, in Richmond VA, when a cardiac surgeon wrote a piece with the title above, including this:

Today, there is a movement afoot — one that is welcomed by me and many of my colleagues. It’s a change that I hope will become the norm when it comes to the physician-patient relationship. It’s all about partnerships between patient and provider.

To hear a surgeon say that – one who just met us recently, at last fall’s Medicine X conference – is hot stuff. It’s especially important that none of the society’s founders were involved – the discussion now has a life of its own.

e-Patients.net: Words Matter – Let’s Reconsider the Term “e-Patient”

[Read more…]

Filed Under: Digests 3 Comments

November 18, 2013 By e-Patient Dave 11 Comments

New look for the website!

New banner screen grabIt’s time for a new look!

After three years with a “Facebook Blue” banner at the top of the site, I’m switching to this new one. This one does two things:

  • It uses the graphic identity of my book cover, Let Patients Help.
  • It takes advantage of the new publicity photo all patients got (free!) at the Medicine X conference at Stanford this year.

In a way, my face is as close as I’ll get to a logo. :)   I worked for a couple of months this summer with design consultant Jonathan Klein, trying to figure out what I wanted to convey. Then the other day while talking with my web consultant Alicia Staley (mid-flight!) this idea evolved. Love it! Great ideas pop to the surface when @Stales and I jabber.

Finally, my book cover designer Tania Helhoski of BirdDesign Studio did the art, since she also created the book cover this was based on.

What do you think? Give us love! Or pick the nits.

p.s. There’s more to come – more changes along the same line. Big things in the wind!

Filed Under: Business of Patient Engagement 11 Comments

November 8, 2013 By e-Patient Dave 3 Comments

Patients in Power conference: background and live blog

At 2:00 a.m. New York time, a conference started in Athens, Greece: the second annual Patients In Power conference, created by powerhouse cancer patient Kathi Apostolidis. I want the U.S. to know what’s happening here, so the usual Twitter stream won’t do: most of it will be over by the time America’s online. So I’m going to live blog parts, so people can read later. Through the day I’ll blog about it occasionally. Here are the basics:
Patient Created v2

  • Live stream on LiveMedia.Gr (with archive)
  • The Patients In Power website (in Greek and English)
  • Facebook page
  • Twitter account: @PiPGr
  • The #PiPGr Twitter stream on TChat
  • Twitter analytics on Symplur

Later posts here today:

  • European Charter of Patient Rights
  • Eruption in the session on Cross Border Care

Patients more than Included

Patients Included badgeThe badge at left is the symbol of the Patients Included movement, created by Lucien Engelen, director of the Radboud REshape & Innovation Center at Radboud University Medical Center. Its purpose is to put an end to conferences that propose to be for the benefit of patients, without including said patients in the conference.

The best known “all about the patients” conference is Larry Chu’s Medicine X at Stanford: patients are truly at the center, e-patients are advisors to the conference, and the conference subsidizes participation by patients. This conference in Athens goes even further: the organizing committee consists of forty patients  & advocates, and just one academic. Every single aspect of this conference was conceived, designed, planned and prioritized from the patient point of view.

I took the liberty of modifying Lucien’s badge. If his university’s lawyers yell at me we’ll deal with it. :)

Newsletter adSaturday: e-Patient Boot Camp

For more than a year, Kathi has wanted to bring my “e‑Patient Boot Camp” to Athens. This year she made it happen.

Saturday morning we’ll have a 3.5 hour training based on Let Patients Help, with plenty of interaction. (At both the Friday conference and the Saturday boot camp there’s simultaneous translation.) I anticipate assistance from the incredible Martha Hayward of the Institute for Healthcare Improvement – a cancer patient, accomplished health improvement executive and their guru of what they call “Public and Patient Engagement.” She’s speaking today, and I’ve been learning a ton, spending time with her.

And that requires, of course, having the book in the local language:

Greek edition of Let Patients HelpLet Patients Help – in Greek:
“Οι Ασθενείς Μπορούν να Βοηθήσουν”

I love that this movement is getting more momentum from individuals than it’s getting from the whole Society for Participatory Medicine – which I co-chair. (Gotta fix that!) In the Netherlands Lucien Engelen has created a Dutch translation of Let Patients Help, and in Budapest Bertalan Mesko created a Hungarian edition.

For this event, Kathi organized a team of volunteers to translate the book into Greek and get it printed – not in a fancy bound “real book” but in a saddle-stitched booklet. When someone translates the book for self-use, I don’t collect a royalty – what they do with it is up to them. (I just require that the message be translated accurately, so the message isn’t spread incorrectly. And if the book is to be sold at retail, we need to talk.)

This is Let Patients Help “on the hoof.” For real.

I have to say, being at this event is a little bit of a cognitive firehose – this is so different from other conferences, which are either managed for commercial purposes (the sponsors get to speak!) or for the benefit of researchers or some other party. For most such events, getting them to engage with patients is like pulling teeth: “Do we HAVE to? And why do they need financial support?? Most of our speaker don’t.”

Well, that issue doesn’t exist here, because this event was created bypatients. Nobody needs to explain to them how to view healthcare from the patient’s point of view.

Congratulations to Kathi and the large network of volunteers and sponsors she has assembled.

 

Filed Under: Events 3 Comments

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