ICSI/IHI Colloquium, May 2010: What e-Patients Want


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#3:38 + 23 = 4:01

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@4:01 + 22 = 4:23

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@4:23 + 22 = 4:45

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DIARRHEA WHEN YOU CAN’T HURRY If you're gonna break a leg, do it while you're passed out I was back at work, went to bathroom, passed out. Woke up, femur in V shape. So – break it while passed out, don't wake up until you're in shock, which lasts until medics gave morphine. Ambulance, potholes on 93; lamaze Carpentry on my leg Wound got infected – wife w vet skills took digital camera ("looks infected to me") Ortho said yup – no need to come down to hospital – take those antibiotics you have script for

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1000 women 10 have BC sensitivity 90% => 9 positives 990 don’t have BC false positive 9% x 990 = 891 positives Total 900 positives … of which 9 have it.

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Remember why you became a doctor, and do everything in your power to do care better. To alleviate human suffering caused by disease – the most noble calling in the world.

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What e-Patients Want from Doctors, Hospitals and Health Plans “e-Patient Dave” deBronkart @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientdave dave@epatientdave.com

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The short answer: Let Patients Help. In every way you can. Now for some details.

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“I want to note especially the importance of the resource that is most often under- utilized in our information systems – our patients” Charles Safran MD, Beth Israel Deaconess and Harvard Medical School Testimony to the House Ways & Means subcommittee on health, 2004

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How I came to be here today High tech marketing Data geek; tech trends; automation 2007: Cancer kicker 2008: E-Patient blogger 2009: Participatory Medicine, Public Speaker

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Patient is not a third-person word. Your time will come. The right of a desperate person to try to save themselves The right to know what your options are The right to pick up your data and pursue an option elsewhere Foundation Principles

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We’re NOT “all patients” – not until we have an “oh dear heaven please don’t let them screw up” moment.

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Doc Tom said… Equipped Engaged Empowered Enabled” Doc Tom said, “e-Patients are

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Society for Participatory Medicine Founded in 2009 to further a model of health care that encourages partnerships between physicians and patients: “Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.” 2 Main Projects: e-patients.net Journal of Participatory Medicine

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e-Patients.net (SPM’s blog) Keep up to date on the e-patient movement See the e-patient movement from a variety of perspectives Check out Doc Tom’s white paper on e-patients to learn more about the role of e-patients in health care

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John Sharp, Cleveland Clinic: “If you have not read the e-Patient White Paper, you do not understand the future of medicine.” John sharp

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Journal of jopm.org @JourPM Participatory Medicine Taking it “from anecdote to evidence” Peer reviewed for and by providers, patients, and all Open access (free) Co-Editors are a physician and a lay editor/patient

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I’m like JFK: “They sank my boat”

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Some of the 12 items in my pre-appointment “agenda” email The Engaged Patient, 2006

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The Incidental Finding Routine shoulder x-ray Jan. 2, 2007 “Your shoulder will be fine … but there’s something in your lung”

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Multiple tumors in both lungs Where’s This From?? Where’s This From??

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Primary Tumor: Kidney

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E-Patient Activity 1 E-Patient Activity 1: Researching my condition

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Classic Stage IV Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company’s web site Median Survival: 24 weeks

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Facing the Reaper

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My mother

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My daughter

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“My doctor prescribed ACOR” (Community of my patient peers) E-Patient Activity 2:

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Reading (and sharing) my hospital data online E-Patient Activity 3:

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Attitude! Bernie Siegel’s “Exceptional Cancer Patient” Laugh (Norman Cousins, PNI) Sing Eat Like a Pig

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E-Patient Activity 4: My own social support network (CaringBridge.org - family and friends - journal & guestbook)

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Finally, a Symptom (6 weeks post-x-ray) Some tips…

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Out, Damned Spots! March 6 Laparoscopic Surgery

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Two weeks before IL-2 started Tongue metastasis erupted

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E-Patient Activity 5: Tracking my Data During a serious disease, the chance to be engaged (or to help) is a huge mood booster, infinitely better than “I’m helpless / there’s nothing I can do”

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The Interleukin worked. Target Lesion 1 – Left Upper Lobe

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September: “Go out and play” What to do next??

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Pay it forward. Start a blog, to teach.

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Get educated / get engaged

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“If I read two journal articles every night, at the end of a year I’d be 400 years behind.” It’s not humanly possible to keep up. Dr. Lindberg: 400 years

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The lethal lag time: 2-5 years... During this time, people who might have benefitted can die. Patients have all the time in the world to look for such things. The time it takes after successful research is completed before publication is completed and the article’s been read.

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Death by Googling: Not. (Dr. Gunther Eysenbach, Europe) . Compare with IOM’s “To Err is Human”: 44,000-98,000 deaths/year from preventable errors

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“Arguably it’s more dangerous not to google “your condition.”

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“We modestly suggest that these conclusions are no more 'anti-doctor' or 'anti-medicine' than the conclusions of Copernicus and Galileo ..were 'anti-astronomer.'”

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“e-Patient?” I know one when I see it.

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Using social media to share info that other patients asked for Driven by patient questions in my ACOR community My idea, not the hospital’s Cost to hospital: $0

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What e-Patient Dave wants, in short: Let Patients Help

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It’s more important than the money. It’s more important than who’s in charge. It’s more important than keeping customers from going elsewhere. What e-Patients Want Let our first commitment be to do healthcare better. Find things that interfere and remove them. (“Muda”)

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Whose data is it, anyway? A second set of eyes “Patient as platform & point of integration” What e-Patients Want Gimme My Damn Data

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January 2008: Suspicious

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February 2009

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“When e-Patient Dave pushed the button to send his data to Google Health, what happened was front page news.”

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Lesson: Unmanaged data quality produces trainwrecks Data quality risks: Physician errors Clerical errors “Tasty delicious baloney” (upcoding)

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But: We could do mash-ups!

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Psoas muscle (My kidney tumor was encroaching on it) my rendering on VisibleBody.com

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Why not “Google Earth for my body”?

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What e-Patients Want Please get an EMR with full patient visibility! Help us help ourselves “My dog has a better PHR than I do”

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Until people get experience, they’re inexperienced. What e-Patients Want Empower. Train. Coach. “The solution is not to withhold and constrain. Empower the people – enable and train.”

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What e-Patients Want Acknowledge that people are using the Web. Pew Internet & American Life Project: 73% of adults are online 83% of internet users (61% of adults) look for health info But they seek info from their doctors more! Like teens and sex, we’re doin’ it, like it or not. Teach.

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Cell phones leapfrog drinking water When handhelds are included, the digital divide disappears. http://thapz.blogspot.com/2008/04/cell-phones-leapfrog-drinking-water.html

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What e-Patient Dave wants Empower the young in the design of care Blumenthal: “At Mass General I adopted IT to keep up my younger colleagues” Nobody fresh out of school says “I’m not sure emailing patients is a good idea”

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What e-Patients Want Pursue Berwick’s “Triple Aim” Experience of Care Health of populations Cost Health Affairs, April 20, 2010

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What e-Patients Want Get real about data rights (end HIPAA myths) When in doubt see the summary linked on this flyer

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What e-Patients Want Get over our false sense of certainty. Be open; verify; check.

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What e-Patient Dave Wants Get over our denial that healthcare is risky. Deal powerfully with our failure rates. Health professionals are dedicated, highly trained, motivated people But working together in hospitals, they’re the 4th biggest public health hazard. (Brent James, Intermountain)

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Chance of being accidentally killed in hospital per patient day is greater than the chance of being killed per soldier day in Iraq. More are accidentally killed in hospitals every year than in the whole Vietnam war 58,000 killed in Vietnam Peak year 16, 892 Providers, patients, families, caregivers must all work vigilantly to acknowledge this and intervene

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Do you have a higher priority than working on how many you kill by mistake? What e-Patients Want Improve. Be open. Publish your failure rates, and encourage your neighbors to, too.

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Learn to say “I don’t know. Let’s look” Be open. Support (and use) MITSS.org What e-Patients Want Get over the perfection thing. It causes lawsuits, stress, ruined careers.

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Asynchronous 24/7 Takes less time Fear of abuse is a familiar concern w/ new technologies What e-Patients Want Doctor-patient email Kaiser’s evidence Best practices were well documented in 1998!

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What e-Patient Dave wants More attention & funds for HealthNewsReview.org and Gary Schwitzer Empowering, enabling training for patients and providers and policy people

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What e-Patients Want More attention to understanding statistics Potent, empowering training for patients and providers and policy people

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Mammography quiz You know the following about local women: Probability of BC (prevalence): 1% If a woman has BC, probability of testing positive (sensitivity) = 90% If a woman does not have BC, probability that she tests positive anyway (false-positive rate) = 9% A woman tests positive. She wants to know the odds she has BC. What’s the best answer? ~81% “Out of 10 positive mammograms, 9 do have BC” “Out of 10 positive mammograms, 1 has BC” ~1% ~81% “Out of 10 positive mammograms, 9 do have BC” “Out of 10 positive mammograms, 1 has BC” ~1% 21% of doctors got it right. Gynecologists!

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What e-Patients Want Realize: Evidence is important, but not all truth has evidence… yet. “On the fringes of medical knowledge, lives are at stake and medicine doesn’t have the answers yet. What do you do?”

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Attitude! Bernie Siegel’s “Exceptional Cancer Patient” Laugh (Norman Cousins, PNI) Sing Eat Like a Pig

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Attitude! Bernie Siegel’s “Exceptional Cancer Patient” Laugh (Norman Cousins, PNI) Sing Eat Like a Pig Due out in June

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2.8 e-Patient Years in Pictures…

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Could it be … Engaged patients might take better care of themselves??

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What e-Patient Dave Wants: Let Patients Help. “e-Patient Dave” deBronkart @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientdave dave@epatientdave.com

Summary: Presentation at 13th annual ICSI / IHI Colloquium by "e-Patient Dave" deBronkart, co-chair of the Society for Participatory Medicine

Tags: epatient dave patient empowerment engagement participatory medicine icsi safety