Draft post, not ready for publication, but we're "publishing" it for a shared review process.

Original Interop Standards Workgroup recording of the meeting:

https://us02web.zoom.us/rec/play/D9SzQJvSQ3IWstvS1qcQsEYGu-XjAdy-qCp8hbbPYWEDZKSPY5uCc3z4qSzX1D9e_ZUzzB9--wnmiCxV.wM4Sengsw0tzbqtS?startTime=1652193138000&_x_zm_rtaid=cbUh6hV6TQuz-qOrAw1lsQ.1652456717554.651702a0f8d01fc9825ad9b94c2fc9d2&_x_zm_rhtaid=628

That link is ugly. Can we get it onto YouTube, which embeds properly?  Example:

Summary of Key Points in the presentation:

• The Volume and Impact of Errors in medical records is Staggering
  • Geisinger, in the WSJ 2014: "If we don't have accurate data we can't take care of patients appropriately," 
• There's a broad spectrum of errors that patients report finding, many of which they assess as "serious" or "very serious." (OpenNotes study, 2020)
  • The OpenNotes 2020 study call to action:  invite patients to report perceived mistakes in shared visit notes, particularly those that patients believe are very serious, may be associated with improved record accuracy and patient engagement in diagnosis. 
    • Patients in the study identified a need to develop efficient mechanisms to process error reports. This cries out for automation.

Follow-on aspects of the problem:

• Impact on medical errors: We should be doing anything and everything in our power to reduce, if not eliminate Medical Errors as they are the 3rd leading cause of death in the US.
  • Obviously, wrong information in the chart is a setup for errors: invalid history, missing history, invalid allergies, missing allergies, etc etc etc can all cause the best doctors and health systems to do the wrong thing, causing harm and cost (and impacting the hospital's reputation, and provider emotional distress)
• Health equity: Chart errors have greater impact on the most vulnerable 
• Data liquidity makes the problem more visible AND causes errors to spread

Patients want error reporting mechanisms that:

• include clear instructions about how to report a mistake and whom to report the mistake to. 
• ability to report mistakes online using a fast and easy instrument
• many prefer an objective third-party reviewer other than their own doctor
• In addition to the convenience of online reporting, some prefer asynchronous reporting

Patient Request for Corrections impacts these areas of care quality:

• patient safety
• improving patient care
• care coordination
• shared decision making and patient empowerment
• trust.

Impact of errors on public health research:

• Data quality directly impacts public and population health research.

Impact of errors on ISWG's work in HITAC, impacting multiple projects:

• The Interoperability Standards Work Group is a subcommittee that provides recommendations to the Health Information Technology Advisory Committee (HITAC),
• As with the impact of errors on physicians' work (above), erroneous data affects the mission of every initiative that uses the data:
  • Information Blocking Rules
  • The Gravity Project
  • The Gender Harmony Project
  • Project US@
  • Pandemic preparedness
  • Public health efforts

Policy Levers already historically in place ...

to enable and support Patient Request for Medical Record Corrections:

• ONC Correction Principle (2008), 
• HIPAA Privacy Rule,  
• in 2011 the HIT Policy Committee recommended to ONC that they establish certification criteria to enable the HIPAA request for correction/amendment process, and 
• 2015 Edition Health IT Certification Criterion addresses amendments.

Current state of ability to request corrections: (in the absence of a standard)

• No standards-based processes

• Labor intensive, low tech workflows

• Outside of the current EHR workflow - no sync, no alignment, gap-prone / non-automated process. Archaic

• Not interactive

• Not scalable

• Lack of continuity & fragmentation throughout 

The HL7 Patient Empowerment Work Group, Patient Request for Corrections Project:

• First project assigned to us by the HL7 board! Immediately recognized as "net new" - nobody else in HL7 was working on it. (It's interesting to reflect on why!)
• Began in Summer 2020.
• Under the leadership of Debi Willis, Virginia Lorenzi, and Dave deBronkart, the project has gone through 4 successful connectathons and the IG has gone through ballot and is currently under reconciliation. 

______________________________________________________________________________

Grace: for our readers, what is the following about?

ISA Structural Recommendations:

• Change “Specialty Care & Settings” menu to “Use Cases”

• Include Patient Request for Corrections as an ISA Use Case for standards development and implementation

ISA Global Recommendations:

• Recognize that the HIPAA “right to request corrections to one’s medical records” Use Case broadly applies to all information in the designated record set and all EHI

• 
  

  Encourage ONC to establish certification criteria to enable the HIPAA request for correction/amendment process via patient access FHIR API

  
  

• FHIR resources exist that can be used to implement bi-directional communication.

  
  

• Ensure that patients, at minimum, can make their corrections through the patient access API for all data available through the API

• ONC to collaborate with the HL7 Patient Empowerment Workgroup to help address gaps in standards, capabilities, and implementation of Patient Request for Medical Record Corrections

ISA Granular Recommendations:

• Services/Exchange: Add Patient Request for Corrections to “Consumer Access/Exchange of Health Information” and corresponding terminology and exchange standards, where applicable
• Administrative: Add Patient Request for Corrections to “Administrative Transactions to Support Clinical Care” and corresponding terminology and exchange  standards, where applicable

In May 2008 at the first health event I ever spoke at, an all-day panel in Cambridge MA, they left a seat empty in the morning, then brought me up after lunch. Pretty edgy thing for them to do, 13 years ago! And the first thing I ever said, when my turn came, was:

Listening to this morning's discussion, I was struck with how everyone was talking about patients as if it were someone out there on Memorial Drive - someone not in this room. Well, I'm here to tell you, patient is not a third-person word. Your time will come, when it's YOU or someone you care about in that hospital bed.

Today I'm here to say the same is true (as many of you know) about health data, and this time it's me - specifically, my left eye. There are lessons about the need for FHIR (interop) and the need for patient-contributed data.

• Last summer I had a botched cataract procedure, resulting in PCR with retained fragments: pieces of the old lens fell down into the eyeball. Not supposed to happen; not good.
• This necessitated vitrectomy at another hospital - basically vacuuming out the eyeball, to get at the fragments.  So, I have eye-related records at a second practice. This one uses Epic / MyChart.
• Something didn't go right (I haven't found out what, exactly) so when I woke up I was briefly introduced to another doc who was brought in, mid-procedure.
• The eye's been a bit bothersome, and getting worse, so I've moved downtown to a top-tier hospital. Records are now also at a third practice, also using Epic / MyChart.
• Separately, I have records at another hospital closer to home, another MyChart portal for misc. radiology, dermatology, colonoscopies.

Some quick observations:

• Importing data from everywhere is vital, but blending and organizing it is a mess.  
  • For instance, using the Epic feature to link MyCharts together created a mess.  Suddenly the stuff I saw at my eye hospital has been pushed aside by colonoscopy news, etc.
• The small local practice's portal "sometimes works and sometimes doesn't," as they frankly put it. The data it sends to my data aggregator app (MyLinks) is incomplete.
  • It has eye pressure data that MUST get into the downtown hospital's system, and there's no way for me to submit it in structured format. This points to the importance of our "patient contributed data" project: if a patient's only way to contribute is by sending a free-text message, we will fall short of the reality that patients can provide structured data when systems fail.  Is there any excuse for this to not be enabled in FHIR?
  • Project leads Jan Oldenburg Maria D. Moen let's discuss ... I envision an app letting a user point to ANY structured data field and saying EITHER "Wrong - fix this" OR "Add new info"
  • Should / can this be woven into the thinking on the Patient Requests for Corrections project??  Debi Willis Virginia Lorenzi 

More to follow.

_{See also other posts and assets with tag requests-for-corrections}

The Patient Empowerment Workgroup in HL7/FHIR has a project underway that needs real-world experience. Can you help? Here's a message from project co-lead Debi Willis:

===========

Thank you for being willing to talk with us about the important topic of patient requests for corrections to errors in their medical records. 

We are attempting to automate the process to allow the conversation to be done via an app that the patient is using. Patients are now able to pull their health records from their clinics via the FHIR API and aggregate them into their own “mini-EHR” owned by them. As this capability increases throughout the US, patients will begin to see errors in their charts and may want them corrected.

We want to help streamline the process for both patients and health data holders (providers, insurers, etc) by designing FHIR standards to allow the patient to use their same FHIR app to communicate their request for corrections. We will not impact what is done within the clinic to process the request. That is out of scope. We only want to automate the “conversation” between the patient and the covered entity part of the workflow. You can think of it as we are designing the “telephone lines” to enable the conversation. We want to make sure we fully understand the needs while we are designing the process.

Our understanding from some other experts is that there is often A LOT of conversations back and forth with the patient during the process. We are trying to understand more about the level of communications. It would be great to know something like this (just a rough estimate from your experience):

• X percent of patient requests can be handled without further questions.
• X percent of patients need 1 to 2 clarifications before the request can be fulfilled.
• X percent of patients need 3 to 7 clarifications.
• X percent of patients need over 7 clarifications. 

A guesstimate is all we are looking for. This will help us tremendously.

Thank you for your help and time. We really appreciate it.

===========

Please respond to workgroup co-chair Dave deBronkart at dave@epatientdave.com. (HL7 members can respond in a comment below.) And spread the word - share this to anyone you know who has real-world experience on the subject!

Social posts for easy sharing:

• LinkedIn
• Facebook
• Twitter 

_{See also other posts and assets with tag requests-for-corrections}

As hoped, yesterday's orientation to our track at next month's Connectathon was well attended. Kudos to track leads Debi Willisand Virginia Lorenzifor their comprehensive presentation. Here are the promised assets, for those who couldn't attend:

• Recording of the meeting (slides & audio) on YouTube (57 minutes ... pro tip: in the "Settings" gear, you can speed up playback)
  
  
• Slides - PDF with clickable links to info on our project and this event:

A note for those new to the HL7 standards process:

We're very pleased that this project is drawing interest from new people who haven't been exposed yet to the HL7 software standards organization.  Quick tips:

• As an ANSI standards organization, HL7's process and meetings are fully transparent and open to participation by anyone.  Membership is required if you want to participate in formal votes such as approval of a specification, but anyone can attend discussions about specs. 
• More info about yesterday's session - and about our Patient Empowerment workgroup - is in our blog post announcing it.
• "Connectathons" are an important part of the HL7 process. In a Connectathon, developers of a spec and its implementers (vendors who want to create products for it) get together and try to make it all work as intended. These are formal conferences with many breakout rooms. Registration info is in this presentation.
• We are sometimes referring to our part of this event as a "Correctathon," since this project is about patients requesting corrections.   (Again, for more info on the importance of this issue, see Wednesday's blog post.)

If you want, you can browse the HL7 website, perhaps starting with the About page.  

_{See also other posts and assets with tag requests-for-corrections}

UPDATE:  The recording and slides of this meeting are in our follow-up post on this blog. The PDF of the slides contains links to all relevant sites and documents for the project.

The HL7 Patient Empowerment Workgroup would love your participation in the Patient Requests for Corrections Track at the January 2021 Connectathon. Yes, we're calling it a "Correctathon."   We invite you to learn more this Thursday, Dec. 17 at 1 pm ET. Details below.

Who are we?

We're HL7's newest workgroup, Patient Empowerment, created in 2019 by the HL7 Board. Our mission and charter are posted on WG home page, bit.ly/hl7patients. We are tasked with "promoting and amplifying the viewpoint of patients and their caregivers in HL7’s standards work, in support of the HL7 mission."

Our first project is Creating a FHIR Implementation Guide for Patient Requests for Corrections.  Game on! 

_{(Why is this so important? See bottom of page.)}

What are we doing at the January "Correctathon"?

It's the first public testing of our new draft IG to enable submitting a patient’s request for corrections using FHIR, including their ability to track the status of their request through completion or rejection.

Get Oriented - join us at our orientation this Thursday

This week we're giving over our regular meeting slot, Thursday 1pm ET, to an orientation to our event. https://global.gotomeeting.com/join/322275573 Come learn the specifics of what we'll be doing, and maybe meet others who'll attend.

If you missed the orientation - no worries -  we recorded it.

Sign up here for our January track.

Here's the full track description as approved.

What role will your organization play?? Have a look at the options...

Thank you for your consideration. Your insight and collaboration is valuable to us.

Read on if you want to know why this is such a big deal.

Why are correction requests so important?

Chart errors are a big problem which affects not just patients but the clinicians who rely on clean chart data to help them do their job. (How can they, if the chart is wrong??)

The Wall Street Journal reported in 2014 that up to 90% of medication lists were found to contain errors(!)  And as that post says, "No clinician can perform to the top of their training if the info they’re given is wrong." The article notes, too: "Providers might face legal liability in the event of an adverse or allergic reaction or a prescription that doubles something the patient is already taking."

Importantly, in that study, pharmacists agreed with and accepted the corrections patients submitted. This project is not about "inverting the tyranny" and giving patients control of everything; it's about patients as partners in improving chart accuracy. And as the 21st Century Cures Act gives patients infinitely greater visibility to EHR data through FHIR, it will be essential that we optimize the flow of requests and negotiations.

Our hope is that by working together, we can provide patients with an efficient way to communicate those errors so they can be reviewed and corrected.

Additional articles on the problem

Frequency and Types of Patient-Reported Errors in Electronic Health Record Ambulatory Care Notes

Bell S, Delbanco T, Elmore J, et al., Frequency and Types of Patient-Reported Errors in Electronic Health Record Ambulatory Care Notes, JAMA Netw Open. 2020;3(6):e205867. doi:10.1001/jamanetworkopen.2020.5867

Patients as diagnostic collaborators: Sharing visit notes to promote safety and accuracy

Blease C, Bell S. Patients as diagnostic collaborators: Sharing visit notes to promote safety and accuracy, Diagnosis. April 8, 2019. DOI:10.1515/dx-2018-0106

When doctors share visit notes with patients: a study of patient and doctor perceptions of documentation errors, safety opportunities and the patient–doctor relationship

Bell S, Mejilla R, Anselmo M, et al., When doctors share visit notes with patients: a study of patient and doctor perceptions of documentation errors, safety opportunities and the patient–doctor relationship, BMJ Qual Saf doi:10.1136/bmjqs-2015-004697

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