Participatory Medicine

Patients can help.Let us.If you remember nothing elseTakeaway #1

Meaningful Usemust include patient access.Takeaway #2

Foundation PrinciplesPatient is not a third-person word.The right of a desperate person to try to save themselvesThe right to know what your options areThe right to pick up your data and pursue an option elsewhere

The Incidental Finding

Your shoulder will be fine but theres something in your lung

Textbook Stage IV, Grade 4 Renal Cell Carcinoma

Actual illustration of Stage 4 RCC from Proleukin.com, with my additional lesions added

After the shockyoure left with the question:What are my options?What can I do?

E-Patient Activity 1:Reading (and sharing) my 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: Responsive. What patients need.Virtually no cost. (Way 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, lets set aside just 1%to help patient communities help themselves.Note: this is an audiencewhere you dont have to motivate adoption.Time-to-benefit is nearly instant.

The treatment worked.Target Lesion 1 Left Upper Lobe

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

EquippedEngagedEmpoweredEnabledDoc Tom said,e-Patients are

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

Lindberg (NLM): 400 years.If I read two journal articles every night,at the end of a year Id be 400 years behind.Its not humanly possible to keep up.

The lethal lag time: 2-5 yrsThe time it takes after successful research is completedbefore publication is completed and the articles been read.During this time, people who might have benefitted can die.Patients have all the time in the worldto look for such things.

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

Let patients help.

Industrial-Age MedicineThe ability to create value belonged to those who controlled the means of production(Doc Toms early vision of how access to information would turn healthcare on its head)

Information-Age MedicineInternet access to the means of production (information)means all of us can contribute, create value, participate.

Thats participatory medicine.

Doc Tom foresaw it allwithin months of the Mozilla browsers birthin April 2004

So: will consumers pullfor EMR adoption?Look at the citizen trend. (Source: Pew 2009)Online Broadband2000:46% x 5% (54% not online)2008: 74% x 57% (26% not online)Regulate in 2009 for where the puck will be in 2020

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False medication warningThe hospital transmitted every condition I ever had, with no dates; all were stated as currentWhen e-Patient Dave pushed the button to send his data to Google Health, what happened was front page news.

Lesson:Unmanaged data qualityproducestrainwrecks

Takeaway:HIT needs to follow normal IT best practicesSelect an appropriate data vocabularyDont be seduced by the readily availableEvaluate fitness for purposeConsider 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.

Meaningful Usemust include patient access.

EnableParticipatory MedicineBecause health professionals cant do it alone.

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