“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientdave dave@epatientdave.com How e-patients & social media will transform patient care

Optional: Click to play 18 minute YouTube video of TEDx speech April 4, 2011

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 2010: full time

This is the Year of Patients Rising

“It can be argued that the largest yet most neglected health care resource, worldwide, is the patient” Slack WV. CyberMedicine: How Computing Empowers Doctors and Patients for better Health Care. Jossey-Bass 2001.

Patient is not a third-person word. This is personal. Your time will come. The right of a desperate person to try to save themselves Foundation Principles: Personal

The internet gives patients unprecedented access to information and knowledge. This changes everything – for people who harness it. Save lives first. Then compete. Foundation Principles: Business/Technical

“Networked patients shift from being mere passengers to responsible drivers of their health Participatory Medicine www.ParticipatoryMedicine.org and providers encourage and value them as full partners.”

Pt of future

Me? An indicator of the future?? Who’s getting online: 1989: Me (CompuServe sysop) 2009: 83% of US adults (Pew) Who’s romancing online: 1999: I met my wife (Match.com) 2009: One in eight weddings in the U.S. met online

Transformation: The genesis of new possibilities through rearranging what was already there Same material; but now flight is possible

The ability to create value in healthcare depends on access to information

Today, because of the Web, patients can connect to information and to each other . (and doctors!)

Cluetrain Manifesto, 1999: “Markets are Conversations” 30 years ago the “marketing funnel” was this: (Graphics by Forrester)

Conferences with significant patient participation 2009 Medicine 2.0 e-Patient Connections 2010 e-Patient Connections Medicine 2.0 Health 2.0 Paris (April) Health 2.0 DC (June) Health 2.0 SF (October) (with stipend) Institute for Healthcare Improvement Forum (December) (with stipend)

Euro conferences with patient participation: 2011 Danish health IT, March TEDx Maastricht Israel Internet Society IKF, Lucerne Danish Patient Safety Association e-Patient Connections Barcelona Bilbao, Spain (July)

The meme is booming. Google hit counts by year

The meme is booming. Google hit counts by year

Question:

How can it be that the most useful and relevant and up to the minute information can exist outside of traditional channels?

“If I read two journal articles every night, at the end of a year I’d be 400 years behind.” Dr. Lindberg: 400 years 2-5 years The time it takes after successful research is completed before publication is completed and the article’s been read. The lethal lag time: Death by Googling: Not. Compare with “To Err is Human”

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

What if his family had googled “splenectomy”?

What if the care team had shared the care plan?

Abington Memorial’s shared Daily “CARE” Plan Simple: A custom output report from their EMR to print out the consumer-level information Patients and families are informed and engaged They often spot details that are wrong in the system. Free quality improvement!

Transform: Knowledge of treatment options

3 out of 4 kidney cancer patients never hear about HDIL-2. When your time comes, won’t you want to know?

Laparoscopic versus open surgery Won’t you want to know?

Patients want to know. Patients talk.

Transform: Patient safety

Transform: Efficiency

Denmark: 70 hospitals Denmark: 70 hospitals 25 hospitals

Transform decision making

A Shift in the Wind Mass media begins to see that engaged patients can help

Nov. 2007: This googling patient was a nightmare (Article title should be “When the patient is a yahoo”!)

o Feb. 2010: Sites like ACOR & PatientsLikeMe: patients are creating value by connecting

Jan. 2011: Googling patient helps doc find correct diagnosis more quickly

“It can be argued that the largest yet most neglected health care resource, worldwide, is the patient” Slack WV. CyberMedicine: How Computing Empowers Doctors and Patients for better Health Care. Jossey-Bass 2001.

Transformation: The genesis of new possibilities through rearranging what was already there

Let Patients Help.

“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientdave dave@epatientdave.com e-Patients & social media will transform patient care

“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientdave dave@epatientdave.com e-Patients & social media ARE transforming patient care