Focus on the Patient Story: Presentation with Regina Holliday at Health 2.0 STAT DC

@Lygeia and @ePatientDave join the dialogue at Health 2.0 STAT DC

One should never get comfortable sitting on a panel as an expert when @ePatientDave is in the audience, and really, life is better when it is understood, in general, that the audience knows as much, if not more than the people on the stage. I have actually never thought of taking a photo of the audience when I am on the stage, until last night, and I’m glad I did.

That’s him, sitting next to Lygeia Ricciardi ( @Lygeia ) from Washington, DC’s Clinovations ( @clinovations ) at last evening’s Health 2.0 STAT DC, lovingly coordinated by the team at Aquilent. I should add that we almost didn’t make it last night, because Regina Holliday’s ( @ReginaHolliday ) ePatient Ephemera show was scheduled to be on this date. However, she moved it to a week later to allow greater participation of this community in her work and vice versa. This speaks to the amount of collaboration that’s going on in the #epicenter.

Regina and I spoke about including the patient story in all of the work we do. The images I presented are below.

To see Regina’s images, you should go to her blog where they are on display. We decided to do a two-blog debrief, with each of our perspectives.

I am hopeful that the other excellent speakers, Emily Zeigenfuse, Chris Boyer ( @chrisboyer ), George Thomas, and Phil Baumann ( @PhilBaumann ), our social media gateway to the Jedi knights of health care, nurses, will do the same.

You’ll see that I found a new image (slide 6) to accompany the now infamous photograph of Fred Holliday’s medical record (copied at a cost of 73 cents a page and offered after a 21 day wait) , which is a notebook of features and screens of Kaiser Permanente’s next generation personal health record, coming into production over the next year.

When I saw it sitting on a table, I thought it told a story about the millions of families who will benefit from access to their health information and physicians and nurses online (17,000,000 visits in first quarter of 2010). See what you think.

We were visited by Louise Liang, MD, herself an international leader in health information technology, through her stewardship of the successful rollout of Kaiser Permanente’s electronic health record, KP HealthConnect. She’s also now an editor of a new book, “Connected for Health: Using Electronic Health Records to Transform Care Delivery.” I’m looking forward to reading it because I know from experience what a great leader Louise has been in creating unparalleled connectivity for patients and those who care for them. She posed for a photograph with Regina and I:

Louise , Regina, Ted

I am glad that Louise got to hear Regina’s story, which adds (through the power of the story….) so much to what she’s accomplished in her career. I sort of think Regina is going to follow in her footsteps. I hope I can keep up.

And…. Regina. I am so impressed with what she accomplishes every day for people when she’s telling her story in person, or when her art is doing it for her. Last night was another reunion of the original 73 cents group, who were brought together by Christine Kraft ( @christinekraft ) in May, 2009.

Christine reminded me last night that when she brought this group of people together last year, the purpose was just to share experiences.

There was no agenda.

No agenda.

No formal writeup.

No peer-reviewed journal article.

Maybe there’s something to this social media thing.

 

Thanks again to Jen Bundschu, Mike Tock, Aquilent, and all of the great people / citizens of the #epicenter for adding their faces to the changes coming in health care.

Update: Direct link to Regina’s blog post, and a little clarification about @ePatientDave above. He only makes me uncomfortable when he’s NOT around.

22 Comments

Ted, I suspect it'll be way more than 7,300,000 a page by the time you guys send a consultant to every patient's house for 3 weeks to instruct them how to use it. Or will it be a tad more intuitive than that?

Oh Matthew,

You are speaking of KP's My Health Manager? Have you used it?

Thanks for being there in spirit last night,

Ted

Whaaaat, I made you uncomfortable??

You're right, great discussion, and even better, you're on target in noting that "no agenda" can really get things done.

(I wonder how many people recall that in Latin, "agenda" meant "that which is to be done.")

Hey Dave,

Not in the "you're making me uncomfortable" sense, in the "you should be up here with us" sense. It reminded me of the Health 2.0 Boston where you were addressing us from the balcony. I took a picture then, too, it was the best.

The conversation blurred the lines between "audience" and "panel" and that's a good thing, it reflects the reality that the audience often knows as much if not more than the speakers, and the #epicenter environment promotes people being real,

See you next week!

Ted

Ted: At the end of a patient/member advisory board meeting this week, I was confronted by a woman who announced "I am one of the 20 percent." She referred to a statistic I had quoted that said 80 percent of Kaiser Permanente members believe we provide excellent care for serious illness (as opposed to 42 percent of non-members).

She went on to describe the end of her husband's life, during which his Kaiser Permanente doctor "sat on his hands" rather than aggressively treat his liver cancer. I am not a clinician, but I have seen a loved one die of liver cancer and I know how quick and devastating that is. I also know how powerless one can feel.

The woman said she is now on the advisory council so something like that will not happen to another family. I asked her what she thinks we should do differently, and she said we just need to listen.

And sometimes that's all we can do.

Ah, gotcha, Ted. Agreed, it's wonderful to blur the lines between audience and speaker, by having the audience speak and the speakers listen!

You are SUCH a leader in this stuff – you teach me all the time, by example, and yes I know you say that about patients too. That's the point.

Re me being in the audience, there was no shortage of patient power up front where you were. 🙂

Hey Ted and Dave —

It was a pleasure (as always) being in the room with you two and the rest of the amazing presenters/participants. I wanted to raise a follow up to the discussion. There's one detail that's been bothering me. Dave asked a question re HIPAA forms and whether Ted was surprised that so many patients sign them/ agree to have their stories told. Just wanted to clarify– the HIPAA form is NOT a permission form. Signing it doesn't mean you agree to share your health info. All it does is certify that you have been informed about how your health information is being used.

But the problem is, most people do not understand either the purpose of the form or what it actually says. Thus the main instrument of patient "education" about privacy is in fact largely useless and perhaps counterproductive (as much of HIPAA is in practice) because despite excellent intentions it ends up creating confusion. An important lesson to keep in mind as we help people understand what health IT is, isn't, and in what circumstances they do actually have choices to make.

– Lygeia

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Ted Eytan, MD
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