On Friday I wrote here about the ten part blog series I recently did on Tincture, about why I believe the HL7 FHIR standard promises to be so important in achieving the long-felt need for patients to have access to every bit of their health data … to “let patients help” improve care, as my book and TED Talk have said for YEARS. But last fall I gave a talk that expressed my impatience. The title:
“From ‘Let Patients Help’ to ‘Get Out of My Way’:
why some patients want ALL their data now”
I flew to Amsterdam on my own dime (which I never do) to address the “DevDays” FHIR developer conference in November, imploring them to do everything in their power to leave the door open for consumers (aka patients & families) to get their / our hands on every bit of the data.
Here are the slides, and here’s the video (26 minutes): (email subscribers, click the headline to view it online if you want)
“Get out of my way”? Yes, it’s “push comes to shove” time.
In 2018 I’d learned of two patient stories whose contrast vividly demonstrates what a difference free-flowing data can make. One was the multi-year story of Kristina Sheridan and her daughter Kate, with a crippling case of Lyme Disease, spanning years from 2009 to 2012 and beyond, where all data had to be painstakingly pounded into computers from printouts of PDFs, ultimately leading (laboriously) to a breakthrough.
The other was Mike Morris, a dying software developer who could not believe that his four different hospitals (all using the same brand of system!) could not see each other’s data, so none of the doctors had a complete picture!
Think about that! It’s time to get mad about this stupidity!
So Mike used a FHIR app (1up.Health) to pull it all together for them, and created his own dashboard. Which none of their hospital IT departments could have justified doing. But he could do it, because he had access to his data. So every visit started with Mike presenting the lab data to the doctors!
What Mike did is exactly the same as the highly customized data work Kristina Sheridan did to help save her daughter. But she had to transcribe an 18″ stack of printouts, and Mike got it through FHIR data pipes over the internet.
My appeal in this speech:
What Kristina had to do manually in 2009,
Mike did automatically in 2018 with FHIR.
Make Mike’s way the new normal!
Note: Mike Morris died last winter. None of this is a guarantee of miracle cures; data enables improvement, but doesn’t guarantee it. Another example is my own pre-diabetes diagnosis: when I first got an activity-tracking wristband my weight went up. I only lost weight and beat the diagnosis with a behavior-change program, informed by the data.
Do not deny us the data we might use to help save our own lives.
Do not believe ignorant skeptics. Also, don’t be one.
For ten years now I’ve been evangelizing at conferences for patient access to their health data, and have encountered a broad range of objections to the idea. In the beginning objections centered on “You wouldn’t know what to do with it,” “you wouldn’t understand” etc – objections that even Vice President Joe Biden encountered not long ago, when the CEO of EMR vendor Epic said Biden wouldn’t understand the data if he had it, and besides, she asked, “What would you even do with it?”
Correctly, he answered, “None of your damn business!”
Damn? Yes, damn.
See, people (like Joe) get more heated about this stupidity when it gets personal, and Biden’s son Beau had died not long ago of a nasty brain cancer, for which research was partly impeded by the slow flow of information.
If you haven’t seen his impassioned 2016 speech about this at Health Datapalooza, it’s worth 33 minutes. And here’s Kristina and Kate Sheridan’s compelling 60 minute speech Democratizing Patient Data at the gigantic HIMSS 2018 conference, and here’s Morris’s 15 minute talk at the FHIR applications roundtable in DC last September.
Don’t argue with me if you’re not willing to listen to the voices of sufferers. If you’re not interested in the voices of sufferers, you have no business in healthcare. (There, I said it.) Go sell used cars.
But what do I know? Well, have a look at this guy, Tim Berners-Lee, inventor of the freaking Web (what does he know??), in his 2009 TED Talk “The Next Web“:
Believe me when I say, when your time comes you’ll want that. Get to work on it now.
Randy Saylor says
Sh!t, I may have inadvertently found (fingers crossed) a source of info in my attempt to try to figure out what you seem to be talking about epatient Dave! Just getting started but I’m a patient, age 63, with tons of medical history spread out all over the place. But it seems you are making alot of sense. CHI Memorial (a hospital in Chattanooga) has been a provider (two open heart surgeries and more). I’m on the journey to try to gather my data from many sources in multiple states from alot of sources. I’m gonna keep going if I can help YOU in any way please don’t hesitate to get in touch. Thank you!
e-Patient Dave says
Great. (Well, not the medical situation, but your decision to wrestle with it.) Feel free to use this page for discussion – maybe some experienced people can offer help. No promises!)
How did you stumble on this, out of the vast internet?
Debi Willis says
Randy, we have worked with CHI to connect MyLinks (our patient-facing free application) to their system …along with over 33,000 other clinics. Please feel free to use MyLinks. There is no cost and we DO NOT sell or use your data for anything. I am a cancer survivor who lost several family members to cancer and Alzheimer’s. We built this as a mission to help fix healthcare by giving patients their information (and power) to understand and make decisions. Go to MyLinks.com to check it out and create an account. I hope it helps you in your journey!