Stream: patient empowerment
Topic: Bray Patrick-Lake's Presentation
Grahame Grieve (Jun 17 2020 at 18:13):
Thanks for your presentation, Bray. I think it was a great illustration of the challenges in the intersection between information management and personal lives. I tried to keep up with the implications of what you were saying, in terms of (a) does FHIR cover this information, (b) what kind of inputs would you need to software that creates the visualisations your describe and (c) what are the business conditions that would allow the software services you imagine to come to exist
most of the challenges are in the last part, that's for sure, though there's definitely human judgement in (b). Still, it's the business of healthcare where the challenges are.
Grahame Grieve (Jun 17 2020 at 18:14):
Have you looked at MedicAlert? Of all the organizations in the world, they seem the closest to addressing your concerns around emergency medicine. It certainly sounds like it's in their remit, and it is work in progress for them here in Australia.
Bray Patrick-Lake (Jun 17 2020 at 18:19):
Thanks for giving this some thought, @Grahame Grieve. I know the barriers that hold us back are not technological. MedicAlert has some limited value. I think we should be working with device manufacturers to create a digital library of their patient product cards but then somehow I need a pipe to the actual images of the devices in my body so emergency physicians can have rapid comparisons to look for damage and misplacement. I've also been denied MRIs until I could produce the necessary documentation about tesla ratings, which is kind of ridiculous to think that we put that burden on the patient. It should be immediately obvious when a patient has an implanted device. The primary way of finding that info now is reading old cath lab reports but that in no way links to the actual product information.
Virginia Lorenzi (Jun 17 2020 at 18:37):
Bray, you as well as the other presenters, have clearly shown a need for applications to help patients collect their data but also to synthesize and help the patient understand their health and history and present it in a way that is efficient and compelling for their providers. So being asked a would you rather question – I can see why you would pick app. But you yourself said you need a communication tool to help you communicate effectively with your provider. You could tell them what the app has told you, bring a print out although who prints from apps, or stand close to your provider and show them this data on your phone. Don’t forget your phone! Make sure its powered! Don’t be unconscious!
This question reminds me on how computer applications in healthcare always start. We wanted a system to manage the lab. It turns out the lab system has information that is very useful for folks outside the lab – RESULTS. Getting the data out of the lab system becomes very important. First its lab techs reading the system and telling people results on calls, then its paper reports walked or mailed, perhaps a portal into the lab system. And then someone builds that electronic interface. Labs flow right into the medical record. And even into other systems. This enables better teamwork, and smarter and safer care. This is exactly why I am an interoperability freak.
So dream with me now…
Wouldn’t it be cool if you could create your own summary with graphics and pictures press send and your doctor gets it? She could review it in advance of the visit. She can bring it up on her big screen to discuss with you. She can have it as part of the record (albeit perhaps its patient correspondence to start). And it can live in the record so that next time they still have it (you could update), when you call on the phone they have it, and other clinicians on the care team have it (great example is in a hospital admission)?
Note that the Patient Empowerment Workgroup is especially interested in moving the needle on patient contributed data and we would love your help.
Virginia Lorenzi (Jun 17 2020 at 18:40):
@Terrie Reed Seems to me the Device resource and the Implantable Device profile in US Core may be missing some information like location in the body of the device. Also that diagram you showed Bray would be helpful. I am looping in Terrie here who is very interested in better patient interoperability about implantables. It seems like you would have great input on that!
Josh Mandel (Jun 17 2020 at 18:41):
I think there's a lot of design space between "it's in my app" and "I send everything to all my doctors all the time." The personal hub architecture plus some kind of discovery capability is pretty powerful -- would be interesting to try describing options.
Dave deBronkart (Jun 17 2020 at 18:47):
Josh Mandel said:
I think there's a lot of design space between "it's in my app" and "I send everything to all my doctors all the time." The personal hub architecture plus some kind of discovery capability is pretty powerful -- would be interesting to try describing options.
I wonder if that "design space between" is related to the "void" in her title. Gaping gulf, sorta.
Yo @Bray Patrick-Lake , when Josh says "pretty powerful" and "would be interesting," think about saddling up when you can :-) Express what you'd like!
Grahame Grieve (Jun 17 2020 at 18:57):
@Bray Patrick-Lake and @olivierkarasira intersect around the personal data hub, and how to share it. As, in fact, do all the presentations. @Hamza Salem's "export as FHIR" button is kind of a good pivot, though I think it needs to some marketing, to create some iconic form that people recognise. Some common sequence like
- common button to export the healthcare information
- get a standard FHIR document with information and provenance
- able to import that to your personal data hub etc
Bray Patrick-Lake (Jun 17 2020 at 18:59):
@Virginia Lorenzi absolutely. It's the synthesis and self-directed sharing I seek. I'm the patient rep in several forums with clinicians who say they are not ready for this type of PGHD or self report information, but if it were synthesized and integrated with EHR and into work flow I believe that would make it valuable to them. How do we stay connected as a group after DevDays ends?
I also know @Terrie Reed who's been a huge champion for exactly what I'm seeking. She has fought major uphills battles to make UDI a reality for patients and I truly hope it will become so soon, but for now I still have nothing - not even the patient-facing cards clinicians are supposed to give to patients after procedures. Manufacturers make them and submit them to FDA, but when I asked where mine were during post-op visits I found they had been thrown away with the product packaging and was further told by my specialists' NPs that there was no reason for patients to need those. So ... we need to get rid of the middlemen and give patients direct access to a digital library of device info.
Morgan Gleason (Jun 17 2020 at 19:20):
@Virginia Lorenzi @Bray Patrick-Lake this is also the idea of my pre-visit summary! In my case, it is mainly what all is happening with all of my care but I include pain and life issues too. In Bray’s case she need all the device data and other things she mentioned. This idea of sharing a summary is consistent I think!
Dave deBronkart (Jun 17 2020 at 19:31):
Bray Patrick-Lake said:
How do we stay connected as a group after DevDays ends?
So glad you asked!
- There's this chat
- But it sounds like you REALLY want to be involved with the Patient Contributed Data work in our workgroup, led by @Jan Oldenburg and @Maria D Moen . @Bray Patrick-Lake Re "PGHD" - Note, from the description on our priorities page:
This is intentionally distinct from existing terms such as PGHD (patient-generated health data). Patient-contributed data can include observations, preferences, goals, anything that comes from the patient side of the clinical relationship.
The WHOLE IDEA in our voting on priorities was that healthcare NEEDS to hear things from us, whether or not THEY think it's important. Not just PGHD in the sense of my home blood pressure readings, but anything the systems needs to know to do their job correctly - the job of caring for our needs.
And yeah, it may not be something that fits into Epic / Cerner / etc! We as patient voices are starting strictly from the Requirements end, which must always be separate from "How would we do that?"
Lloyd McKenzie (Jun 17 2020 at 19:35):
HL7 is very much about defining and enabling the 'technical' part of "How would we do that?". Once there's a workable technical solution, it can be come easier to chip away at the organizational, process and social barriers.
Dave deBronkart (Jun 18 2020 at 13:49):
Terrie Reed said:
I'm curious why patient's implant data continues to not show up as an important part of their health record even though it is part of USCDI
@Terrie Reed I'll copy this over from Morgan's thread to the thread for @Bray Patrick-Lake since she's the one whose talk mentioned implanted devices.
I expect part of the answer is that nobody out there has implemented such things in their EMR, and even if they had, there's been no practical way to get it out.
Bray, do you have any thoughts?
Terrie Reed (Jun 18 2020 at 13:59):
@Bray Patrick-Lake Nice to see that you are advocating for this Bray. As you mention it is an uphill battle to get device resource data even at a most basic level of patient access. Fortunately, UDI and data in AccessGUDID (including MRI safety associated with UDI-Device identifier of model/version of device) are still called out in ONC interoperability rule and hospitals and vendors are beginning to focus on UDI capture and patient access to that data. Another area that would close the loop here is to have better, more structured data associated with a device recalls. Ideal is for patient not only to have access to the standards UDI data for their implant but also be notified when that device is recalled. The recall data submitted to FDA and available to health systems and patients needs to be tied to UDI and its not consistently being done. This is frankly our next big hurdle.
Dave deBronkart (Jun 18 2020 at 14:01):
@Terrie Reed is there active work on this somewhere in HL7, which may interest Bray as a highly motivated and informed patient voice?
Dave deBronkart (Jun 18 2020 at 14:15):
Bray Patrick-Lake said:
Terrie Reed do you mean that it would be part of this schema for my health systems using Epic, for example? https://uscdi.epic.com. The majority of my devices were implanted at an AMC using Epic. I have yet to have a medical encounter where the device information has been readily available. Last month I had to put yet another cut and paste package together of my device info and tesla ratings for an imaging center so I could get an MRI. I've had to do this at least 5 times over the years. If the info is somewhere in the record it is not bubbling to the surface. The fastest way to get it is on cath lab reports, but those records just say what was implanted and doesn't have the associated product information necessary for imaging.
This makes me think that as we start to "ford the river" of actually doing interop, there may be a use for some sort of middleware that helps people like Bray declare specifically what stuff they want to extract from each source system, so they can then aggregate it using other apps.
I think 1upHealth does this for BlueButton data. (Yes, @Ricky Sahu?) I don't know if similar is being done by anyone for more generalized data.
Bray Patrick-Lake (Jun 18 2020 at 14:16):
@Terrie Reed I also wonder if there hasn't been effort to pull the historical implant info out? My last implant was in 2013. Maybe they're setting up for prospective capture?
Terrie Reed (Jun 18 2020 at 14:39):
Unfortunately, I think that there has been very little work done with historical implant information. That said, we need to start pushing all vendors and hospitals to collect it NOW and tying to the fields in AccessGUDID that are specified in the 2015 ONC Certification criteria. Dave - O&O has a weekly UDI meeting every Monday. Bray would be a perfect addition to that meeting to bring patient voice to what is needed.
Debi Willis (Jun 18 2020 at 14:41):
@Terrie Reed, we are capturing device data in MyLinks when it is available in the EHR. We are finding the EHRs are not consistent in the way they share the data. I also think some EHRs don’t have data entry screens for health systems to easily input all the unique data fields. That will have a big impact on the structured data entry. Has there been a recent study on which EHRs have all the discrete fields necessary to comply with the ONC interop rules and how the EHR fields match up with the FHIR structure?
Lloyd McKenzie (Jun 18 2020 at 14:51):
In theory, once the EHR is set up to capture the info, they could go back and fill it in retrospectively. However, as there probably is no billing code for doing that, I don't expect anyone will bother without a patient/care-giver jumping up and down and screaming. And in many cases, the data will simply not exist (as no one will have written it down anywhere before tossing the packaging).
Dave deBronkart (Jun 18 2020 at 15:24):
Terrie Reed said:
Dave - O&O has a weekly UDI meeting every Monday. Bray would be a perfect addition to that meeting to bring patient voice to what is needed.
@Terrie Reed thanks but I'm new to HL7 so I have no clue what O&O is, and I'm sure Bray doesn't. :-)
Bray, FYI anyone can participate in any of these - no membership required except for formal voting ballots. So if whatever she's talking to interests you, you'll be welcome. Groups typically have a weekly call, and an open listserv in addition to this chat.
Lloyd McKenzie (Jun 18 2020 at 16:17):
Technically you don't even need membership to participate in a ballot - but if you're not a member, you have to pay money. If you plan to vote on more than one thing in a year, it's more cost effective to be a member.
Lloyd McKenzie (Jun 18 2020 at 16:18):
However, there are lots of feedback mechanisms outside of the ballot process too, so finances shouldn't ever be a barrier to being able to contribute idesas.
Terrie Reed (Jun 18 2020 at 17:30):
Sorry Orders & Observations is the name of the group. They are discussion UDI use cases. I would normally say to sign up for the group via listserv but may need help from Lloyd because this link http://www.hl7.org/myhl7/managelistservs.cfm?ref=nav says that you must have an HL7 account and 'New subscriptions will be unavailable temporarily.' Lloyd, is it ok for me to send her the meeting info?
Dave deBronkart (Jun 18 2020 at 17:35):
tagging @Lloyd McKenzie
Also @Bray Patrick-Lake here's the group's home page in the Confluence platform. I have no idea what you'll find there :-)
Terrie Reed (Jun 18 2020 at 18:44):
@Bray Patrick-Lake @Dave deBronkart I'm happy to give an overview/intro to HL7 UDI work. Ideally, UDI and recording of implants would be embedded in HL7 worksgroups to the same degree as medications. We have a way to go...
Lloyd McKenzie (Jun 18 2020 at 19:40):
No issue with sharing the web meeting information @Dave deBronkart. @Terrie Reed, HL7 is pretty familiar with UDI. We worked closely with the FDA around it and it's actually supported in all of our standards now - there's an implementation guide that speaks specifically about how to do so. (UDI has some gnarly bits that are technically troublesome we've done lots of discussing about too.) From a FHIR perspective, the UDI details will typically be captured in the Device resource. Though some more generic UDIs will occasionally just be sent as a device code.
Virginia Lorenzi (Jun 20 2020 at 04:42):
@Terrie Reed Although implant data is required in the USCDI, there is no requirement that it be captured in a structured way that wouldmake it available for the USCDI transmission. Remember when Meaningful Use started? They required that meds, allergies, problems, demographics, and smoking status be recorded in the EHR in a structured manner. Then later then were required to share it. But with the newer fields, no such requirement was given. Only that if it is available in CEHRT it has to be shared. So it seems optional to me. Its more like, if you implement the document implantables in structured way workflow, then you have to share it in USCDI. If its just written in the note as part of the narrative, that isn't structured.
Virginia Lorenzi (Jun 20 2020 at 04:49):
More about missing UDI info - the implant info might be recorded on the surgery system and not sent to the EHR. Surgery system does not need to comply with USCDI. Also - its not USCDI only that has the UDIs - its in Common Clinical Data Set - the earlier version that is widely implemented today. USCDI is the new one that is not widely implement - not required for a couple years. USCDI adds in notes and provenance mainly.
Dave deBronkart (Jun 20 2020 at 12:43):
Just wondering - are there other Zulip streams that should be made aware of this discussion here in Patient Empowerment?
Lloyd McKenzie (Jun 20 2020 at 14:05):
The #devices and #Orders and Observation WG are the places where most discussions around UDI have taken place. I'm not sure we've identified a standards issue though. The standards support UDI. The issue is that systems don't necessarily support the standards yet - and even where they do, culture/processes don't necessarily support the capture. The former is driven by both provider demand (questionable as there isn't necessarily a direct business benefit and it's not a key marketing differentiator) and regulation (is there any?). The latter is driven by customer demand, regulation and professional practice expectations. HL7 doesn't typically have a ton of influence over any of these things. However, we can create greater awareness of the standards and educate implementers about the value to patients of conforming to them.
Terrie Reed (Jun 23 2020 at 14:35):
I agree that HL7 has supported modeling of UDI and associated vocabulary for many years and continues to provide a place for UDI in CCDA, FHIR resources etc. @Virginia Lorenzi - UDI is in US Core Data for Interoperability and hospitals are taking note of it. There is definitely continued interest in recording UDI not only for clinical but business reasons. My frustration is that capturing the UDI is so incredibly easy from a technical perspective. It's a bar code that can be scanned and parsed into any system with the capability to receive it- just like the items we scan in retail stores. The UDI-DI (device identifier part of UDI) is linked to a publicly accessible database with master authoritative device about all regulated implants made in US and once, scanned, the UDI could be used to auto-populate a patient's record with that information. Once scanned and linked, the implant cards Bray describes can be downloaded to phone apps or printed. In addition, other patient care benefits can be derived - e.g. identifying whether a device is MRI safe, made of latex etc. I agree that it will take a combination of policy, business drivers and PATIENT VOICE to make capture of UDI more routine. I applaud @Bray Patrick-Lake and other patients with implants that speak out about this. Any ideas on how to amplify this message are welcome as part of HL7 activities or with other groups. I personally think it might taken a coalition that involves all stakeholders - it's a big boulder to push up the hill even thought it seems so needed for patient safety
Lloyd McKenzie (Jun 23 2020 at 14:38):
The UDI stuff is marked as mustSupport in US Core. It's not obvious to me how else to amplify the requirement...
Bray Patrick-Lake (Jun 23 2020 at 15:11):
@Terrie Reed It seems like the path is paved for UDI going forward if we can just get people to scan the bar codes. Have there been any spot checks to see who's actually implementing it? I don't see how device info for people like me who've had things implanted in the past is going to get into the record though. I think that would require NLP or hand entry. Any ideas for patients with older implants?
Lloyd McKenzie (Jun 23 2020 at 15:16):
One question would be whether Apple supports capturing UDI (or device information at all) in their record software. That would certainly give a patient a mechanism for capturing - and sharing - such information. @Pascal Pfiffner?
Pascal Pfiffner (Jun 23 2020 at 17:01):
Unfortunately the Health app does not support the Device resource as of today. :grimacing:
Lloyd McKenzie (Jun 23 2020 at 18:53):
@Pascal Pfiffner I realize that predictive statements as to likely future enhancements is not something your firm typically does, but can you take back the importance of having proper records of device information (implanted devices especially) as something that's definitely worthy of priority consideration for the future?
Pascal Pfiffner (Jun 23 2020 at 18:54):
Absolutely, noted!
Last updated: Apr 12 2022 at 19:14 UTC
