Stream: patient empowerment
Topic: BlueButton announcements, possible spillover
Dave deBronkart (Jul 31 2019 at 13:08):
I'll be back later with links, but - last night on Twitter there was a lot of chatter about yesterday's announcement at the White House about Apple, Amazon, Humana, Blue Cross, et al, saying that they will be giving patients full access to their claims data history. @Ricky Bloomfield and @Ryan Howells were prominent in it.
I'm not well informed about it but I'm bringing it up in this stream because:
There's LOTS of patient chatter about what the heck anyone can do with BlueButton data that will be USEFUL in any meaningful way, since it's by definition only a list of one's past transactions with the health system, e.g. appointments, prescriptions, etc. Some activists said what they want is INTEROP, which led me to say "That's what FHIR is for. Come look."
With luck, this may lead to some new and pretty savvy patient voices joining here.
More later ... I'm speaking at a Medicare event this morning.
Ricky Bloomfield (Jul 31 2019 at 13:53):
I appreciate your passion for this topic, @Dave deBronkart! Asking how useful the EOB/claims data will be is a legitimate question. But I think a better question is whether the benefits of making the data easily available to patients outweighs the risks. Access to this type of data does not preclude access to any other type.
While the EOB/claims data is generally not as high-fidelity as clinical data that comes directly from health systems, it is typically more comprehensive because it reflects that patient’s engagement with every health organization or pharmacy where their insurance has been used.
This can be very helpful, for example, to know if a user actually paid for and picked-up their prescription, which is more than we can know today from health system med lists. I believe while the utility of the data may not be as clear today as we would like, making the data available to patients (and, by extension, the apps of their choice), will result in more opportunities for more developers to figure out how make use of it to the benefit of patients (with their consent, of course).
Debi Willis (Jul 31 2019 at 15:08):
Another benefit is to help detect fraud. There have already been cases where a patient was able to see what was being billed to their insurance company and they were able to let the insurance company know they never received the products or services a company was billing the insurance company for. I have multiple instances where my insurance was billed for another patient's service. Seeing that information will help the patient make sure their records are correct with the insurance company and also help insurance companies find cases of insurance fraud. Transparency is a win-win for everyone.
Dave deBronkart (Aug 27 2019 at 18:26):
Back to July 31 - ah, the risk of summertime threads that may get washed away...
I appreciate your passion for this topic, Dave deBronkart! Asking how useful the EOB/claims data will be is a legitimate question. But I think a better question is whether the benefits of making the data easily available to patients outweighs the risks. Access to this type of data does not preclude access to any other type.
I think we're talking about two different issues. I certainly think there's value in getting people interested in even "orts" (crumbs) of data. OTOH, I'm so freaking tired of semi-informed media coverage saying "Oo oo oo you can get 'your health data'!!!" when they don't have a clue what they're talking about. I think HL7 in general and FHIR community in specific can be a voice for clarity on this.
Time after time I hear people saying things that make clear that they don't realize CMS claims data (aka BlueButton) is (a) very limited in scope, and (b) often very poor quality, as in "false"! :-)
This is a valuable discussion - we're opening an entirely new space of public conversations about health data items that until now were an invisible pile of glop, a patchy collection of some valuable items and some mistakes. Your example of "I can tell whether they picked up their script" is a great illustration - a valid though isolated use case, yet far far far from the grand vision some people hear when they see "get your health data." :slight_smile:
Grahame Grieve (Aug 30 2019 at 00:26):
CMS claims data (aka BlueButton) is often very poor quality, as in "false"! :-)
well, it's always perfect for it's use.... it's a correct statement of the claim. it's just not your health
Dave deBronkart (Aug 30 2019 at 06:17):
It may be a correct statement of the CLAIM that was submitted, but that doesn't mean it's a correct statement of what was DONE. (I'm guessing from your wording that you know this, but it's essential for anyone new to the subject to realize that claims submitted for payment are often inflated or just plain false (fraud) or mistaken.)
Dave deBronkart (Aug 30 2019 at 06:20):
And I might add that in the context I cited - naive media coverage of "You can get your health data!!!", BlueButton data is not just a tiny subset of "your health data," it's sketchy.
I wonder if we (HL7 / FHIR community) should create a concise tutorial for reporters who are new to this stuff. I just had a 75 minute call yesterday with a very earnest / not-naive reporter from Kaiser Health News who was nonetheless completely unaware of these issues.
Should we create that tutorial? Some of us in the patient WG/TF certainly have enough stories to contribute.
Grahame Grieve (Aug 30 2019 at 09:58):
I'm probably talking to the same reporter in a few days time. I'm not sure why it would be worth doing a tutorial when they can just call one of us directly (which they do....)
Grahame Grieve (Aug 30 2019 at 09:58):
you can always refer them to me
Last updated: Apr 12 2022 at 19:14 UTC
