Stream: patient empowerment
Topic: Patient hacker
Ben Creasy (Nov 25 2018 at 05:58):
hey, I'm a patient hacker (https://chat.fhir.org/#narrow/stream/2-social/topic/app.20recommendations.20(open-source.3F)) - still trying to orient myself in this world - as I have a newly diagnosed chronic illness, this type of stuff will prolly be my top priority for a while
Ben Creasy (Nov 25 2018 at 06:14):
anyone have any experience with Kaiser Permanente Northern California and United Healthcare? I'm switching from Kaiser to United Healthcare effective in a few days
apparently Kaiser uses Epic, but I haven't found an API and they've only given me PDFs - I had to call to get real images
I found a "Machine-readable files" section which supposedly has some json but all the links were broken - plus that json prolly wasn't about me
https://interchange.kp.org/ also seems broken
Lloyd McKenzie (Nov 25 2018 at 16:37):
I'm not aware of any contacts for United, but @Danielle Friend and @Scott Robertson might be able to put you in touch with the right people on the Epic and Kaiser side of things
Dave deBronkart (Nov 25 2018 at 21:19):
I'll see if I can rope in Liz Salmi, KP patient and member of the OpenNotes team. AFAIK Kaiser is still unconverted but the work goes on, and an essentially step is always ending the excuse "Our patients aren't asking for access." #derp
Ben Creasy (Nov 26 2018 at 04:08):
I signed up for https://carepassport.net and https://1up.health/products/patient and both seem decently patient-oriented - found them on https://apps.smarthealthit.org/apps/featured
still would prefer an open-source solution, mostly out of concern for long-term commitment
with that said, neither could pick up Kaiser Permanente Northern California or Epic and I'm asking them about it - I guess theoretically the 21st Century Cures act prohibits information blocking (per https://en.wikipedia.org/w/index.php?title=Electronic_health_records_in_the_United_States&oldid=870493648#cite_note-2) so Kaiser / Epic really should expose an API if they've got one?
Mikael Rinnetmäki (Nov 26 2018 at 12:56):
There's a very active patient hacker community in (especially type 1) diabetes, see https://www.healthline.com/health/diabetesmine/innovation/we-are-not-waiting and http://www.nightscout.info/
Mikael Rinnetmäki (Nov 26 2018 at 12:58):
Hugo Campos has fought over access to the data from his pacemaker, https://twitter.com/hugooc
Ben Creasy (Dec 12 2018 at 09:47):
still interested in machine-readable data from Kaiser - I'm looking at the California statutes Patient Access to Health Records [123100] (http://leginfo.legislature.ca.gov/faces/codes_displayText.xhtml?lawCode=HSC&division=106.&title=&part=1.&chapter=1.&article=) and noticed this in 123100(b)(2) : "If the requested patient records are maintained electronically and if the patient or patient’s personal representative requests an electronic copy of those records, the health care provider shall provide them in the electronic form and format requested if they are readily producible in that form and format"
Ben Creasy (Dec 12 2018 at 09:50):
since third-party apps can get access to my data, I suppose I could get it under the guise of creating a startup corporation? when I went to https://open.epic.com/Tech/SignUp they wanted to know my company, and I don't have one (yet)
Michele Mottini (Dec 12 2018 at 14:09):
You don't need a company - just put 'myself' or 'self-employed' or something like that
Michele Mottini (Dec 12 2018 at 14:09):
(..and let us know if you have any luck connecting with Kaiser...!)
Scott Robertson (Feb 01 2019 at 04:54):
Currently Kaiser Northwest and Colorado regions are available on Apple's Health app (via FHIR). I don't reside in either of those regions, so I can't attest to how well they work.
If you want machine-readable now, health summaries can be downloaded from kp.org. Sign in, go to Medical Record / Download my health summary. You can select for a given visit, a time range, or an overall summary. The download is a zip file with a pdf and a folder named MachineReadable_XDMFormat containing the summary as a CCD. My download contained everything I expected. Very large histories will get truncated (e.g., limit labs to 200 entries)
Ben Creasy (Mar 27 2019 at 06:35):
I did end up signing up to open.epic.com - https://open.epic.com/MyApps/Endpoints does not have Kaiser
according to Ricky Sahu, CEO of https://1up.health (which seems to be relatively up on this), Kaiser Norcal is planning to have their API by the end of the year altho he's trying to get it earlier... since it's Epic it sounds like it shouldn't be that burdensome but they're dragging their feet
Dave deBronkart (Apr 03 2019 at 19:36):
Anyone from Kaiser (or Kaiser Norcal patients) here?
Anecdotally (but anecdotally over and over and over and over, with ZERO contradictory anecdotes) I've heard for years that despite all its great pro-patient image, they reallyreallyreallyreally don't want patients to be able to get their data and go elsewhere.
I know @Ricky Sahu is hoping to have that API by year end ... I placed a non-trivial side bet with him on whether it happens. If I lose because they do it, it'll be the best $100 I ever spent! :-)
Grahame Grieve (Apr 03 2019 at 20:37):
@Walter Suarez respond here...
Walter Suarez (Apr 03 2019 at 20:42):
To the questions (?) about Kaiser Permanente, here are some facts (so hard to come-by nowdays…)
• For years KP has been providing patients with their data multiple ways (including, in the past four years, via our http://KP.org member portal through a ‘blue-button-like’ link)
• KP is certainly not afraid for patients to be able to get their data and go elsewhere. They get their data and actually stay.
• We are certainly not perfect, and are always trying to improve access to ACTIONABLE data for patients, with ACTIONABLE tools, not just data dumps.
• And the jewel – As part of our participation in the (formerly known as) Meaningful Use program – the largest and oldest MU participant in the program – we will be implementing across our network an API interface for our patients to have access to their data via FHIR-based apps. Starting October 1, 2019. Three months before the end of the year.
Grahame Grieve (Apr 03 2019 at 20:43):
@Dave deBronkart you lose. Or is that "you win"?
Grahame Grieve (Apr 03 2019 at 20:44):
thanks Walter (who also tells me that the end-point will be Argonaut conformant)
Walter Suarez (Apr 03 2019 at 20:48):
I think (hope) we all win. No looser here.
Michele Mottini (Apr 03 2019 at 21:21):
Isn't the deadline to have (formerly) MU3 API live 4/1/2019 ?
Michele Mottini (Apr 03 2019 at 21:23):
Is there a KP sandbox we can test connections to?
Scott Robertson (Apr 03 2019 at 21:32):
@Dave deBronkart I'm another Kaiser patient and employee. Happily accessing my health data for many years.
Dave deBronkart (Apr 04 2019 at 11:46):
Hey hey hey, looks like a number of things happened while I was in transit back from Germany, then resting up last night. :-) I did not mean to offend - those who know me know that's not my style. So please, anyone who feels I was being stupid or misinformed and thus flamingly wrong, please know that in such cases all I need is blunt correction. Which I never object to. :-)
More detail in next message.
Dave deBronkart (Apr 04 2019 at 11:55):
An essential question here is, what do we mean by "my health data"?
To fully activated patients and caregivers, there can be no mistake about it: to be fully empowered partners in care, we need access to ALL OF IT. (Lots more to say on this, but for the moment let's focus on that.)
[disambiguation disclaimer:]THE FOLLOWING IS ASKED WITH A GENUINE FRIENDLY SMILE :-)
My impression is that what Kaiser has shared for years, as one of the truly laudable pioneers of this stuff, is lab results etc - not everything the HCPs can see - is that correct?
So, to our colleagues who are patients and/or workers in the KP system, saying KP has offered access - are you alluding to portal data, or everything the HCPs can see? Because the latter is what people like Mike Morris need.
Dave deBronkart (Apr 04 2019 at 12:42):
I think (hope) we all win. No looser here.
I will be an ecstatic trumpeter when it's up! And GLADLY pay my $100 "access fee" in the form of a bet I'm glad to lose :slight_smile:
Walter Suarez (Apr 04 2019 at 14:53):
@Michele Mottini "Isn't the deadline to have (formerly) MU3 API live 4/1/2019 ?"
For 2019, the EHR Reporting Period is a minimum of any continuous 90-day period between January 1, 2019 and December 31, 2019. Most everyone chooses the last continuous 90-day period, from October 1, 2019 to December 31, 2019.
Michele Mottini (Apr 04 2019 at 20:17):
I see, thanks
Last updated: Apr 12 2022 at 19:14 UTC
