****************** SEVEN WHEELCHAIRS *****************

Participatory Medicine Based on a presentation by e-Patient Dave to the board of the National eHealth Collaborative, June 2, 2009 Washington DC

If you remember nothing else… Takeaway #1 Meaningful Use must include giving patients access to their medical records.

Takeaway #2 Patients can help. Let us.

Foundation Principles 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

My story, Part 1: Cancer

The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007 “Your shoulder will be fine … but there’s something in your lung” The shadow was a golf-ball size tumor: kidney cancer that had spread throughout the body

“Textbook” Stage IV, Grade 4 Renal Cell Carcinoma My lesions matched this illustration of Stage 4 RCC on Proleukin.com, with many more. Median survival time was 24 weeks after diagnosis; I was on the way out.

“Encyclopedia” web sites told me about the disease, but …

After the shock you’re left with the question: What are my options? What can I do?

Get engaged. Get it in gear. Do everything you can.

E-Patient Activity 1: Reading (and sharing) my hospital data online

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

ACOR is great. I posted two messages tonight and got responses in 4 and 11 minutes. One responder also sent a private note mentioning Robin and Cathy. The other responder was Cathy. :) Through that list I've also found several other useful sites. Patient communities are responsive. People discuss what to do, what to know. At virtually no cost. (Cheap. Not free.)

Please: 1% for the patients. Patient communities do a whole lot of good for a little bit of cash. Whatever we spend, let’s set aside just 1% to help patient communities help themselves. Note: this is an audience where you don’t have to motivate adoption. Time-to-benefit is nearly instant.

E-Patient Activity 3: My own social support network (CaringBridge.org - family and friends - journal & guestbook)

The treatment worked. Target Lesion 1 – Left Upper Lobe

What next? Pay it forward. Start a blog, to teach.

Part 2: Discovering “e-patient” (January 2008)

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

Let patients help. You will want to help when your time comes.

Lindberg (NLM): 400 years. “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.

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

Lives are at stake. Docs are squeezed for time. What do you do?

Let patients help.

Doc Tom had an early vision of how our access to information would turn healthcare …on its head…

Industrial-Age Medicine The ability to create value belonged to those who controlled the “means of production” (information) Healthcare before the internet:

Information-Age Medicine Internet access to information means all of us can contribute, create value, participate. Healthcare with the internet:

That’s participatory medicine.

Doc Tom foresaw it all within months of the Mozilla browser’s birth in April 1994

Will “consumers” pull for EMR adoption? Look at the trend for doing things online. (Source: Pew Internet & American Life project, 2009) Online Broadband 2000: 46% x 5% (54% not online) 2008: 74% x 57% (26% not online) Regulate in 2009 for where the puck will be in 2020 Regulate in 2009 for where the puck will be in 2020

Part 3: Walking the walk – moving my data to an online PHR

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

Lesson: Unmanaged data quality produces trainwrecks

Takeaway: HIT needs to follow normal IT best practices Select an appropriate data vocabulary Don’t be “seduced by the readily available” Evaluate fitness for purpose Consider granularity (e.g. ICD-9 vs SNOMED-CT) Use established reliability practices for mission-critical IT (e.g. audit trails, data quality practices) Test with real-world data before going live

Patients can help. Let us.

Part 4: Bringing it to another person’s crisis

Some hard questions asked in very simple English (Regina Holliday, wife of Fred, now in hospice) Why do we have more transparency in special education law than in medical care? Why do we have more access to information on a box of Cheerios than on a medical chart? Why isn’t there a medical counterpart of the Freedom of Information Act?

Give us .our data.

Remember these Foundation Principles 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

Meaningful Use must include giving us access to our own medical records. .Online. .Thank you.