Foundation Principles <ul><li>Patient is not
a third-person word. </li></ul><ul><ul><li>Your time will come. </li></ul></ul><ul><li>The right of a desperate person to try to save themselves </li></ul><ul><li>The right to know what your options are </li></ul><ul><li>The right to pick up your data and pursue an option elsewhere </li></ul>
Realities <ul><li>Technological innovation can vastly
alter processes, costs, and outcomes </li></ul><ul><li>Healthcare is, in many ways, far behind other industries in leveraging IT well </li></ul><ul><li>It ain’t rocket science. We just need to pick up the tools and start using them. </li></ul>
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.
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.
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.
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?) <ul><li>Making a difference back here requires: </li></ul><ul><li>Data (evidence of what’s happening) </li></ul><ul><li>Knowledge (the meaning of the data and what to do) </li></ul><ul><li>That’s the definition of an engaged, empowered patient with participatory providers </li></ul>Moment of awareness
“ 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
Takeaway: H IT needs to
follow normal IT best practices <ul><li>Select an appropriate data vocabulary </li></ul><ul><ul><li>Don’t be “seduced by the readily available” </li></ul></ul><ul><ul><li>Evaluate fitness for purpose </li></ul></ul><ul><ul><li>Consider granularity (e.g. ICD-9 vs SNOMED-CT) </li></ul></ul><ul><li>Use established reliability practices for mission-critical IT (e.g. audit trails, data quality practices) </li></ul><ul><li>Test with real-world data before going live </li></ul>
Another data quality risk: the
MIB <ul><li>Insurance industry databank of your billing data </li></ul><ul><li>Totally opaque </li></ul><ul><li>Considers itself not liable for damage caused by bad data </li></ul><ul><li>Lesson: You better check for errors. </li></ul>
What’s in your wallet, medically?
<ul><li>Your data may be full of errors. (Or not.) </li></ul><ul><li>To inspect it, you gotta see it. </li></ul><ul><li>HIPAA lets them take 2 months to deliver it. </li></ul><ul><li>Support HealthDataRights.org </li></ul>
Clay Shirky A serious internet
visionary says… <ul><li>“ Giving patients access to their medical records will just naturally improve the quality of what's in there.” </li></ul><ul><li>“ It's like the way you clean up when you know company's coming.” </li></ul>
<ul><li>“ The opposite model --
clean, then share -- never works out in practice.” </li></ul><ul><li>“ It provides a hidden excuse for never sharing, because if you don't get around to cleaning, you never have to share.” </li></ul><ul><li>“ By making sharing non-optional, you get around this obstacle.” </li></ul>
“ Raw Data Now!” (Tim
Berners-Lee, 2009) <ul><li>E-Patients.net post, 7/10/09 on understanding our data: </li></ul>