FHIR Chat · Patient / caregiver use cases · patient empowerment

Stream: patient empowerment

Topic: Patient / caregiver use cases

Dave deBronkart (Apr 04 2019 at 12:14):

USE CASE: CHECK FOR ERRORS => improve care, prevent harm

One of the key use cases for patient access to all health data is to check for mistakes in the chart. This is not possible by looking at the "orts" of data available in the typical patient portal (lab results etc).

Examples:

This 2018 article from Kaiser Health News (a separate org from KP) contains a number of examples. Some involved real harm.

This 2014 blog post cites a Wall Street Journal article on prevalence and types of errors found in a year-long Geisinger project. I'll paste in a screen capture of a sidebar.
pasted image

Also famed patient activist Regina Holliday has told of finding orders in her dying husband's chart that had been overlooked: a walker to ease the pain of his bone mets, a catheter for his severely distended bladder.

Important value proposition here is chart accuracy, which is an essential part of enabling best care: as I said in that 2014 post -

Remember: this is not just about patient rights.

No clinician can perform to the top of their training
if the info they’re given is wrong.

It's an example of my call to action "Let patients help."

Grahame Grieve (Apr 04 2019 at 12:37):

add correcting information to my list above

Dave deBronkart (Apr 04 2019 at 12:38):

USE CASE: CARE COORDINATION => blend streams from different providers and non-HCP sources

Importance of this escalates as number of providers increases, which is common with difficult conditions and as patients age.

Importantly, AFAIK providers are not compensated for doing the work of collecting and coordinating such data, so this is another example of "let patients help."

This use case often (but not always) ties in with the use case "Check for errors."

Dave deBronkart (May 20 2019 at 19:20):

PROPOSED PATIENT USES CASES, from @Mark Braunstein [I severely failed in my promise to post this for him two weeks ago!]

Finding a use case that lots of people would have a use for is, in my opinion, the real challenge in the patient informatics space. People have been at it for a long time and, so far as I know, no one has found one yet. However, there have always been serious problems with getting medical data to patients (in most early PHRs they had to type it in themselves and even with the advent of CDAs it was fairly complicated). FHIR provides a solution to that as Apple has demonstrated.

I have an Android phone but using 1UpHealth I merely had to register and select my health system from a list and enter my portal credentials and -- like magic -- my records were there in the app and I could play with the information. <=[BlueButton data, if I understand correctly - Dave]

To be honest, I didn't find what I could do with the information particularly enlightening but that's been the case with every PHR I've tried and its clear 1UpHealth has not (at least not yet) focused on what patients might do with the information. A few thoughts on that off the top of my head (yes, the last one is pretty 'far out'):

• It should be no surprise that Apple featured MedSafe in their announcement that they are now supporting FHIR apps (of course they didn't use those words). It takes advantage of FHIR to make it truly easy for a patient to created a medication calendar that is specific to their schedule. In other words the physician wrote 'take twice a day' but what that actually means is different for each patient. Since medications are the mainstay of treatment for chronic disease and since chronic disease is 90+ % of healthcare if there is a 'silver bullet' it might well be around medication management.

• I hate to go there because I'm a social networking Luddite but I suppose an app that helps patients connect with similar patients (using EHR data that could be quite specific - diabetics with similar demographics and levels of control and taking similar meds for example). PatientsLikeMe currently dominates that space but if you put medical records in the hands of patients they could create their own networks using criteria they develop.

• Finally, an idea I actually first heard over 20 years ago. Patient data is valuable but patients don't get any value from its sale and use. Many years ago I met an original thinker in this space (sadly departed now) who envisioned 'health data banks' into which patients could 'deposit' their data and share in the returns generated by the aggregate sale of that data to pharma, insurance companies and whoever else might have a legitimate use for it. Put patient data into phones using FHIR and you've taken a giant step toward that vision.

Dave deBronkart (May 28 2019 at 17:04):

Here, "superpatient" Larry Smarr (former director of the National Center for Supercomputing Applications and now a Quantified Self guru / patient) gives a short illustration of the power of doing what people like Michael Morris and the Sheridans (Kate & Kristina) have done, in aggregating their data. You can watch the rest of this video and others if you want, but the first 30-40 seconds here illustrate the truly "patient power" world that I envision.
https://youtu.be/FZK7JllMPLM?t=605

Note that I'm not specifically talking here about getting data out of EHRs - to the contrary, earlier in the video he says "What’s changing is that the data about you as an individual is being accumulated by you, outside the doctor’s office … this is only going to increase until 99.9% of the data about you is outside the medical record. At that point we are going to have complete disruption of the way medicine is practiced.”

My point is, as Smarr says, that the future world we envision includes gobs and gobs of data that some of us will want to do things with, so please, whatever you/we do, leave the door wide open for patients and their advocates to get every bit of data so they/we can do whatever we want with it.

Don't be limited by any traditional physician use case.

Dave deBronkart (Jun 10 2019 at 17:29):

@David Hay Thank you again for your talk! I have so much to learn, and my "camera" keeps "hunting" to find the right zoom level. (I hope the metaphor makes sense.)

I have a double-ended matchmaking challenge - can you help?

I need to figure out what FHIR information is truly ready (in some meaningful way) for consumption by various consumer-level people, and simultaneously identify some population of consumers who have a need for which FHIR might have a practical solution - or at least on the horizon with enough clarity for someone to say "If you could add this and this, it would be really useful."

Dave deBronkart (Jun 10 2019 at 23:32):

IMG_1448.JPG

Dave deBronkart (Jun 10 2019 at 23:32):

So @Grahame Grieve how might we alter the blankness of this wall in McKinley? :-)

Grahame Grieve (Jun 11 2019 at 10:33):

mark out a section for 'patient issues' - outcomes from Argonaut and other related patient facing things, and consider it 'potential created' so we focus on what could be if we used it enough

Grahame Grieve (Jun 11 2019 at 10:33):

• get my records
• make appointments

Grahame Grieve (Jun 11 2019 at 10:33):

• communicate with my provider

Grahame Grieve (Jun 11 2019 at 10:34):

all things you can do now from someone else's app, I am aware, but now you can do it from a different app - an app that can integrate with other healthcare services etc. Not sure how to describe that concisely

Last updated: Apr 12 2022 at 19:14 UTC