e-Patient Dave

Power to the Patient!

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Patients in Power conference: eruption in the session on Cross Border Care

I’m extracting this from my previous post into a separate one. As I say below, payment policy isn’t my focus, but what happened in this session is an important example of the difference it makes when patients are running the show and dominate the audience. Don’t jump to conclusions until you get to the end.
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Whoa: this subject has caused eruptions among the patients in the audience. After the speakers finished (see below), during Q&A an audience member explained what was really going on, which had not been made clear by the (non-patient) panelists. An audience that had been silent all day became a small roar:

“You are out of touch with reality: look downward, at the lower parts of society!”

“We have a child with a brain tumor – he had surgery … we have no insurance card, and he has complications and now he cannot get surgery!”

Any of this sound familiar in the U.S.? Yes – but you don’t generally hear it said loudly, by people who feel the personal impact, at conferences.

The subject was the European Directive on Cross Border Care, which gives insured patients the right to go get care in another member country. The details of this policy are over my head, but in some ways the arguments are familiar in the U.S.: speakers on the dais gave talks about important new things that are possible, but to the patients in the audience it’s a whole lot of BS, because if you can’t go do what the speakers are talking about, it’s a waste of time: [Read more…]

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Patients In Power conference: European Charter of Patient Rights

European Charter of Patient RightsLatest update (below) 9:50 a.m. ET. I moved the section on cross-border care into another post.

I wish I had three heads to blog and absorb everything going on at the Patients In Power conference, described in my previous post. (I have immense respect for capable journalists!) But, we do what we can.

The current session is on health reforms, including the work to make equal access to care a reality across borders within Europe. The first speaker was Mariano Votta, Director of Active Citizenship Network. From their About page:

ACN’s mission is to promote and support the construction of the European citizenship as an “active citizenship” which means the exercise of citizens’ powers and responsibilities in policy-making.

Hey, that sounds a lot like the Society for Participatory Medicine’s vision of patients as active partners, with power and responsibility! So it’s no surprise that a primary focus of Active Citizenship is Patients’ Rights. And they have a European Charter of Patients’ Rights, created years ago. Until this trip, I’d been unaware of it! Fascinating:

  1. Right to Preventive Measures [Read more…]

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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

Later posts here today:

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.

 

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The “collegial relationship” – in medicine and in business

The “once this year” section was updated 11/5 for better wording.

HealthLeaders cover Sept 2009Of all the statements I’ve heard in medicine, in hours and hours of speeches and talk, none has stopped me in my tracks more than this:

“If you have a collegial relationship, you can talk about it.”

The event was a conference at Maine Health, 5/17/12, and the speaker was Richard Rockefeller, MD. I’d given a talk that morning, and he was part of a later panel.

His name stuck in my mind because he was one of the “White Paper Advisors” cited by e-patient founder “Doc Tom” Ferguson. I knew that Rockefeller was no longer practicing, so it was a special treat to get to meet him.

The statement arose during Q&A. A physician in the audience asked a very common question:

“I understand that patients today can contribute valuable information. But what do you do when they bring in something that really is garbage?

Richard thought for a moment, and said:

“If you have a collegial relationship, you can talk about it.”

Perfect. “Collegial” means you’re colleagues – I googled “define:collegial” and got these, among others:

“relating to or involving shared responsibility, as among a group of colleagues.” (Oxford)

“marked by power or authority vested equally in each of a number of colleagues” (Merriam-Webster)

“Colleagues are those explicitly united in a common purpose and respecting each other’s abilities to work toward that purpose.” (Wikipedia’s entry on “Collegiality.”)

Shared power & authority, common purpose and respect. Doesn’t that sound insipring?

Rockefeller’s response struck me for three reasons:

[Read more…]

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Speaker Academy #13: Strategic freebies

This is the latest in the Speaker Academy series, which started here. The series is addressed to patients and advocates who basically know how to give a talk but want to make a business out of it. I’ll try to be clear to all readers, but parts may assume you’ve read earlier entries.

There seems to be a storm brewing around the issue of speaking for free (or not), which I’ve written about several times (most recently last week). I expect it’s going to get louder, so I want to clarify some points. Then I want to get back to engaging with the audience!

This may be controversial to some readers; fine – I’m open. Let’s discuss or (correct me) in the comments:

  • Your time is your own. I’ve never said you should never speak for free.
  • I do say that you should be thoughtful about how you spend your time, and not be suckered by event organizers who flatter you about your greatness but offer you nothing. Those people are usually parasites, making a living off your time and your thoughts.
    • My favorite low-life conference organizer, World Congress, once pumped my brain for an hour about who should speak at an event they were organizing. They were so enthused I assumed that after a couple of years wrangling with me, I was finally going to speak there. Nope: they didn’t know a single thing about the conference topic, so they were just pumping my brain! Then they went and got those people to speak – for free, I’m sure, while advertising that they’d convened a summit on the subject.

Particularly relevant at this moment is that some events truly do bring you good exposure, which leads on to good things.

My view isn’t the only view, but: in my view perfectly good reasons to do a freebie include (but aren’t limited to):  [Read more…]

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e-Patient Request: Abdominal Sarcoma

Ben Merrion's Walking Gallery jacketUpdate the next afternoon: already some great information has arrived in the comments (and questions to clarify). Be sure to read the comments. There’s no instant miracle here – it’s just the work of social media in healthcare unfolding.
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This comes tonight from Regina Holliday, creator of the Medical Mural Advocacy Project and the Walking Gallery of Healthcare.

Tonight she visited Ben Merrion, whose Walking Gallery jacket [right] was featured two years ago in her post Steampunk Health. Here’s what I know:

  • Ben’s in Georgetown Hospital with abdominal sarcoma*
  • Main mass 3m by 8cm [1.2 x 3.2″]
  • Tumor growth throughout abdomen from stomach to pelvis.
  • Nodules detected in lungs.
  • Probable involvement of leg awaiting PET scan to determine extent of Metastatic spread.
  • The growth is too large for surgery.

Regina writes: “Know any options that work at stage 4?”

*  From Wikipedia: sarcomas are “malignant tumors made of cancerous  bone, cartilage, fat, muscle, vascular, or hematopoietic tissues … This is in contrast to a malignant tumor originating from epithelial cells, which are termed carcinoma. Human sarcomas are quite rare.”

Also, the American Cancer Society’s consumer-level page seems quite clear, to me, with discussion of the different types of soft tissue sarcomas.

Resources

Of course googling any disease name and “treatment options” will bring up the usual list of websites, but if that’s sufficient, people don’t come here with an e-patient request. So the list below is things that go beyond the usual suspects. Here’s what I found so far:

  • The Liddy Shriver Sarcoma Initiative, which among other things says “We recommend Dr. Kevin Jones’ book, What Doctors Cannot Tell You. Dr. Jones is a sarcoma specialist. In this 2012 book, he shares his experiences in order to help patients better communicate with their doctors.”
  • Inspire.com’s soft tissue sarcomas group
  • Dr. George Demetri is a big advocate for e-patients. He’s in the e-patient white paper (PDF) and is Medical Director of the Center for Sarcoma and Bone Oncology (and director of Experimental Therapeutics) at Dana Farber. See his emailed reply, pasted into a comment below.

Anyone?