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NPSF’s magnificent Universal Patient Compact--e-Patient Dave

e-Patient Dave — Tue, 23 Mar 2010 07:48:40 +0000

One of my personal pleasures in the first year of the Society for Participatory Medicine has been discovering people in other parts of the “patient culture” who’ve been doing wonderful, empowering, participatory things for years – and who’ve already been producing valuable results for years. Example: the patient safety movement.

On Paul Levy’s blog I learned about Linda Kenney, founder of MITSS; I met her and wrote about her here. Through her and others I met folks from the National Patient Safety Foundation, and especially its Lucien Leape Institute, which published a major report this month with a solid systemic look at cultural challenges in paternalistic medicine. Even got to be in a small group workshop with Lucien himself last fall. (Didn’t know who he was, but I thought “This guy knows his stuff!” Funny.)

Sometime this winter I got my hands on this magnificent NPSF document. Any of it sound familiar?

The Universal Patient Compact™ Principles for Partnership © 2008 NPSF
As your healthcare partner we pledge to:	As a patient I pledge to:
Include you as a member of the team	Be a responsible and active member of my healthcare team
Treat you with respect, honesty and compassion	Treat you with respect, honesty and consideration
Always tell you the truth	Always tell you the truth
Include your family or advocate when you would like us to	Respect the commitment you have made to healthcare and healing
Hold ourselves to the highest quality and safety standards	Give you the information that you need to treat me
Be responsive and timely with our care and information to you	Learn all that I can about my condition
Help you to set goals for your healthcare and treatment plans	Participate in decisions about my care
Listen to you and answer your questions	Understand my care plan to the best of my ability
Provide information to you in a way you can understand	Tell you what medications I am taking
Respect your right to your own medical information	Ask questions when I do not understand and until I do understand
Respect your privacy and the privacy of your medical information	Communicate any problems I have with the plan for my care
Communicate openly about benefits and risks associated with any treatments	Tell you if something about my health changes
Provide you with information to help you make informed decisions about your care and treatment options	Tell you if I have trouble reading
Work with you, and other partners who treat you, in the coordination of your care	Let you know if I have family, friends or an advocate to help me with my healthcare

.
Compare and contrast: what’s the difference between this and what we’re talking about in participatory medicine?

There’s more to PM than patient safety (avoiding errors), although we expect safety will be one outcome of patient engagement. (The Journal of Participatory Medicine seeks evidence.)

My list of differences so far:

Participatory Medicine says patients are partners in their care, not just recipients. (The Compact could be fulfilled in a one-directional care relationship. Some patients want one-way, which is fine; that’s just not participatory.)
Participatory Medicine adds patient communities - data oriented communities (e.g. Patients Like Me) and others.
Participatory Medicine adds patients seeking and sharing knowledge via social networks and blogs.
Participatory Medicine adds patient-driven research.
Because of all that, Participatory Medicine adds patients bringing information into the healthcare economy.
Participatory medicine requires that patients and caregivers actively participate in their care. Nowhere does the Compact say patients will actuall do anything: they discuss and choose, but then, it seems, they receive the care.

The people I know in patient safety don’t at all consider patients passive, but active participation is one of Participatory Medicine’s fundamental contributions. From the definition on the society’s site:

Participatory Medicine is a cooperative model of health care that encourages and expects active involvement by all connected parties (patients, caregivers, healthcare professionals, etc.)

I’d like to see this compact posted on every door in every medical office. (Download a copy here.) Well done, NPSF.

ER tweet: “If my husband dies, I’m going to go [eff]ing ballistic”--Jon Lebkowsky

Jon Lebkowsky — Tue, 02 Feb 2010 01:45:23 +0000

When Benn Rosales had a heart attack in December, his wife Lani, a very active member of the Twitterati, tweeted throughout the experience. Afterward she thought to compile those tweets as a record of Benn’s e-patient experience: “this hospital is understaffed and we’re being sh*t on because of it. if my husband dies i’m going to go [eff]ing ballistic.” Here’s the story, told in tweets, largely unedited…

http://twitter.com/LaniAR/status/6752311191

dear ER, oh.em.gee.you.are.sooo.slow. please be less slow. love, lani.
9:10 PM Dec 16th, 2009 from web

http://twitter.com/LaniAR/status/6752565073

@jburslem @K2daV @matthew_parente thanks. you guys are wonderful :) hopefully we can go home tonight in time for jimmy fallon :)
9:19 PM Dec 16th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6753414164

RT @BennRosales: if i keel over tonight @laniar gets everything signed me will by tweet. [I'm putting TEN Realtor logos on ur grave!]
9:49 PM Dec 16th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6753425383

okay, finally in triage, @bennrosales being questioned.
9:50 PM Dec 16th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6754309460

oh jesus, it’s blood test and ct scan time. we should take bets on diagnosis so we can pay this damn ER bill…. who’s in? ;)
10:29 PM Dec 16th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6754752419

@jacksonj not sure yet. not neurological, that’s good. may be heart, ekg good, ct and blood up next
10:52 PM Dec 16th, 2009 from TweetDeck in reply to jacksonj

http://twitter.com/LaniAR/status/6754802646

nurse in here she’s super nice. looking like this might be an overnight stay.
10:55 PM Dec 16th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6754906274

OMFG @bennrosales just told the nurse “i’m a squirter” (it was in reference to blood and getting a drip but OMFG out of context it’s GOLD!)
10:59 PM Dec 16th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6755604065

benn wouldn’t let me tell the nurse dirty jokes. chest and arm pain not getting better, this effing ER is SO slow. ct scan next.
11:31 PM Dec 16th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6755844384

doctors don’t like when they’re being serious & you’re on your laptop googling them and poking fun of where they went to med school. lol.
11:43 PM Dec 16th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6756914602

OMFG JESUS EFFING CHRIST, it doesn’t take 30 EFFING MINUTES to respond to the emergency button in this ER room.
12:37 AM Dec 17th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6756918951

would they notice if benn coded? probably not, they didn’t notice for 30 minutes his monitor was off
12:38 AM Dec 17th, 2009 from TweetDeck

>>>http://twitter.com/mexicanfrommars/status/6757201416
@LaniAR that’s about the time i run out in to the nurse station and start screaming.
12:53 AM Dec 17th, 2009 from web in reply to LaniAR

http://twitter.com/LaniAR/status/6757448615

@mexicanfrommars did that. “they’ll be right there” yes i threw a fit. we’re not popular here.
1:07 AM Dec 17th, 2009 from TweetDeck in reply to mexicanfrommars

http://twitter.com/LaniAR/status/6757458525

okay, in the next 238023890 hours, @bennrosales will be admitted. feeling less humorous now, they don’t know what’s wrong. ct, blood clear.
1:08 AM Dec 17th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6757635367

scared.
1:19 AM Dec 17th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6757853747

this hospital is understaffed and we’re being sh*t on because of it. if my husband dies i’m going to go [eff]ing ballistic.
1:33 AM Dec 17th, 2009 from TweetDeck

>>>http://twitter.com/jasoncrouch/status/6757919371
@LaniAR Which hospital? Sincerely praying – I know that has to be truly scary.
1:37 AM Dec 17th, 2009 from TweetDeck in reply to LaniAR

http://twitter.com/LaniAR/status/6757940722

@jasoncrouch [says which hospital]. never come here.
1:38 AM Dec 17th, 2009 from TweetDeck in reply to jasoncrouch

http://twitter.com/LaniAR/status/6761011796

still in er triage still not in a private room. Hour [eff]ing 10.
5:04 AM Dec 17th, 2009 from txt

http://twitter.com/LaniAR/status/6762846325

Update on benn: after being in ER since 8pm, now finally into cardiologist, they said he’s been having a heart attack, angiogram now.
6:48 AM Dec 17th, 2009 from Tweed

http://twitter.com/LaniAR/status/6763197032

thanks for all of the well wishes, i’ll respond (and do so for benn) after the angiogram.
7:06 AM Dec 17th, 2009 from mobile web

http://twitter.com/LaniAR/status/6768701474

@bennrosales’ stint succeeded thank god. Now he has to lay flat for hours.
11:10 AM Dec 17th, 2009 from txt

http://twitter.com/LaniAR/status/6802566670

hey guys, thank you so much for your support- fingers crossed we can get @bennrosales out of the ICU today and into a room!
11:28 AM Dec 18th, 2009 from TweetDeck

>>>http://twitter.com/mexicanfrommars/status/6775473995

http://twitter.com/mexicanfrommars/status/6775473995

http://twitter.com/LaniAR/status/6803956231

@mexicanfrommars you were there at the same time? benn was the one having a heart attack over and over in the ER.
12:18 PM Dec 18th, 2009 from TweetDeck in reply to mexicanfrommars

http://twitter.com/LaniAR/status/6812930385

okay GOOD NEWS everyone, @bennrosales just got transferred OUT of ICU and into a private room! YAAAY! :)
6:02 PM Dec 18th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6832578969

today @bennrosales looks pretty good, still waiting to learn how much heart tissue was damaged. thanks for words of support, all :)
10:22 AM Dec 19th, 2009 from TweetDeck

http://twitter.com/LaniAR/status/6839028530

YAAY! Looks like I get to take @bennrosales home today!!!!!! Finally learned it was a clot that caused the heart attacks!
2:41 PM Dec 19th, 2009 from txt