“ Gimme My Damn Data” Medicine 2.0 September 17, 2009

Participatory Medicine http://ParticipatoryMedicine.org @s4pm e-Patients.net founder Tom Ferguson MD 1944-2006

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

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

Realities Technological innovation can vastly alter processes, costs, and outcomes Healthcare is, in many ways, far behind other industries in leveraging IT well It ain’t rocket science. We just need to pick up the tools and start using them.

Technological innovation can vastly alter processes, costs, and outcomes

Healthcare is, in many ways, far behind other industries in leveraging IT well

It ain’t rocket science. We just need to pick up the tools and start using them.

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.

Facing the Reaper

My mother

My daughter

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 Baseline: 39x43 mm 50 weeks: 20x12 mm

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

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

E quipped E ngaged E mpowered E nabled” 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

Note: participatory medicine often brings a shift in shared responsibility

Part 3: Applying high tech trend analysis (2009)

09/20/09 Copyright Clayton M. Christensen Centralization followed by decentralization: Computing Used with permission Highly specialized skills Expensive equipment Specialized environment

Such innovations depend on processes becoming reliable and the data being mobile.

09/20/09 Copyright Clayton M. Christensen Used with permission The decentralization that follows centralization is only beginning in healthcare Surgical suites High-speed multi-channel testers Imaging: MRI, CT, PET Scanners

Copyright Clayton M. Christensen used with permission Polishing Dept. Turning machines Hobbing department Tapping equipment Boring machines Stamping machines De-burring machines Annealing furnace Shipping Department Cut-off saws Office area Storage Path taken by product A A starts here Path taken by product B B starts here

Consider the impact (in any process) of introducing game-changing new information earlier in the process Life starts here Path taken by life What if awareness happened earlier? (What’s the impact of having information earlier?) Making a difference back here requires: Data (evidence of what’s happening) Knowledge (the meaning of the data and what to do) That’s the definition of an engaged, empowered patient with participatory providers Moment of awareness

Making a difference back here requires:

Data (evidence of what’s happening)

Knowledge (the meaning of the data and what to do)

That’s the definition of an engaged, empowered patient with participatory providers

Psoas muscle (My kidney tumor was encroaching on it) The view I created on VisibleBody.com

Why not “Google Earth for my body”?

HealthLeaders “Patient of the Future”

That’s the vision. Where are we today?

Part 4: 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.” The hospital transmitted every condition I ever had, with no dates; all conditions were shown as current False medication warning

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

Data quality risks:

Physician errors

Clerical errors

“ Tasty delicious baloney” (upcoding)

Takeaway: H IT 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

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

Another data quality risk: the MIB Insurance industry databank of your billing data Totally opaque Considers itself not liable for damage caused by bad data Lesson: You better check for errors.

Insurance industry databank of your billing data

Totally opaque

Considers itself not liable for damage caused by bad data

Lesson: You better check for errors.

What’s in your wallet, medically? Your data may be full of errors. (Or not.) To inspect it, you gotta see it. HIPAA lets them take 2 months to deliver it. Support HealthDataRights.org

Your data may be full of errors. (Or not.)

To inspect it, you gotta see it.

HIPAA lets them take 2 months to deliver it.

Support HealthDataRights.org

Danny Sands (my primary physician): “ How can patients participate if they can’t see their data?”

Clay Shirky A serious internet visionary says… “ Giving patients access to their medical records will just naturally improve the quality of what's in there.” “ It's like the way you clean up when you know company's coming.”

“ Giving patients access to their medical records will just naturally improve the quality of what's in there.”

“ It's like the way you clean up when you know company's coming.”

“ The opposite model -- clean, then share -- never works out in practice.” “ It provides a hidden excuse for never sharing, because if you don't get around to cleaning, you never have to share.” “ By making sharing non-optional, you get around this obstacle.”

“ The opposite model -- clean, then share -- never works out in practice.”

“ It provides a hidden excuse for never sharing, because if you don't get around to cleaning, you never have to share.”

“ By making sharing non-optional, you get around this obstacle.”

“ Raw Data Now!” (Tim Berners-Lee, 2009) E-Patients.net post, 7/10/09 on understanding our data:

E-Patients.net post, 7/10/09 on understanding our data:

Takeaways: s our data! It’s my data, your data. Innovation depends on good quality data and reliable workflows. Let us help.

Takeaways: s our data!

It’s my data, your data.

Innovation depends on good quality data and reliable workflows.

Let us help.

Part 5: ePatientDave.com

2.8 Years in Pictures… September 2009 May 2009 December 2006 October 2007

Could it be … Engaged patients might take better care of themselves?? Let us get involved.

Engaged patients might take better care of themselves??

Let us get involved.

. Give us our data Thank you. [email_address]